Friday, September 7, 2018

Managing Behavioral Symptoms in Dementia: Podcast with Helen Kales

In this week's podcast we talk with Helen Kales, Professor of Psychiatry at the University of Michigan the VA Center for Clinical Management and Research.  

We've spent a great deal of effort in Geriatrics describing what we shouldn't do to address behavioral symptoms in dementia: physical restraints, antipsychotics, sedating antidepressants.

Helen Kales was lecturing around the country about all of these things we shouldn't do a few years back, and people would raise their hands and ask, "Well, what should we do?"  She realized she needed to give caregivers tools to help.

Dr. Kales went on to develop the DICE approach to managing behavioral and psychiatric symptoms in dementia.  Listen or read the full podcast to learn more!  You'd be "crazy" not to! (hint: song choice).


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Eric: Welcome to the GeriPal podcast, this is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex who do we have as our guest today?

Alex: Today from my home state of Michigan we have, and from my alma mater the University of Michigan, we have Helen Kales who is Professor of Psychiatry, Director of the Program for Positive Aging and a Research Investigator at the VA Center for Clinical Management and Research. Welcome to the GeriPal podcast, Helen.

Helen: Thank you Alex and Eric, happy to be here.

Eric: We have a really interesting subject to talk about today, managing behavioral symptoms seen in dementia, but before we do that, Helen, do you have a song for Alex to kind of lead us off with?

Helen: I do, I would like to hear, Crazy by Gnarls Barkley.

Eric: Good luck with that one Alex.

Alex: Not typically done on the acoustic guitar. Here we go. [Singing].

Helen: Alright.

Alex: You are crazy. You are crazy.

Helen: I was swaying in my chair.

Eric: I can't believe you pulled that off, Alex.

Alex: Well, it took a little bit of practice.

Helen: That was great.

Alex: And it's like you know, maybe like 2% is as good as the real song.

Helen: It was great.

Eric: So, Helen, I really am super excited to have you on this podcast because as you know, we've been working with a project with the Center to Advance Palliative Care or CAPC on teaching healthcare providers how to care for individuals with dementia and how to help their caregivers. Just a plug for that, anybody who has access to CAPC can actually look at their first three modules, but one of them was on this really common symptom that I always struggle with, which is the assessment and management of behavioral and psychological symptoms of dementia.

I did this huge kind of lit search to get ready for this module and to figure out what to put in there and the one thing that everybody talks about is the importance of the DICE module. Which I think was first developed in a JAGS paper that was published in 2014 and there was a follow up BMJ article that you wrote and then just recently in 2018, a great article on apathy also that came out in JAGS as well. I was just hoping that we could chat a little bit about how you approach behavioral and psychological symptoms in dementia. Would that be okay?

Helen: Absolutely.

Eric: Wonderful. Well maybe before we do that, how did you get interested in this as a subject?

Helen: So back in the sort of 2010 era, I was doing a lot of work in pharmaco-epidemiology and had done a lot of research looking at the risks of anti-psychotics and specifically mortality. As I went around the country giving talks I found that people would raise their hand at the end of the talk and say, "All right, well what should be do instead?" I didn't like not having an answer.

Eric: Yeah. I give a lot of talks too, and I think the one biggest frustration is you keep telling us not to use these medications and no medications work so what do I do? Like I have this caregiver in front of me who's at their wits end at home, they don't want to move this individual to a nursing home. The nursing home no longer wants to use anti-psychotics for really good reason. What do we do?

Helen: Exactly and so it was around this time that I met Laura Gitlin who's an absolute pioneer in the area of behavioral interventions and she'd done several decades worth of trials with family caregivers, but as we talked we found that a lot of those interventions never made the research to dissemination implementation gap. They never cleared it. We were thinking a lot about why and why these methods aren’t more utilized. Every expert panel always says use behavioral interventions first. If you go and look in clinical settings it's rare to really see those be implemented and especially be implemented in an evidence based way.

Alex: Can we just back up for a sec, Helen this is Alex. I'm wondering what we're talking about when we're talking about behavioral and psychiatric symptoms in dementia. Are there specifics, which are the most common and the most frustrating for patients, families and clinicians?

Helen: Sure, so I think what clinicians often think of as behavioral and psychological symptoms are those that we commonly see in people without dementia. So depression, you may see agitation specifically with certain anxiety disorders in people without dementia. You may see aggression or apathy, psychosis certainly. But when you actually ask caregivers, a lot of what they have difficulty with don't fit neatly into any of those categories and those are things like asking the same questions over and over again, maybe leaving the house, sort of exiting, wandering. It may be even things like resisting bathing and so importantly none of those things are good medication targets and so our understanding of these symptoms is they're very heterogeneous, it's a very large group of symptoms.

Eric: Yeah and the one that, I mean it's interesting because the one that frequently comes to most physicians minds I think when they're hearing about this is agitation, agitation. Thinking about how we could potentially help with that agitation, either the caregiver at home or the care givers in nursing homes. Do you see that as a frequent common problem?

Helen: So you've sort of hit a nerve with using the word agitation. I have a love hate relationship with it. I certainly use it but I liken it to, especially for internists like yourself, shortness of breath. So you know if somebody comes into a doctor and says, "I have shortness of breath." You guys are going to do a history, a physical, you're going to do labs and then you have certain algorithms that you're going to run through in your head depending on what some of those branches yield for you. I actually really think of agitation in the same way. It is not a disease, it's a symptom just like shortness of breath and it has different causes. You know the behavior looks the same but the underlying causes can be you know myriad.

Alex: So maybe we should move into talking about the general approach. First. Maybe starting off with investigating the underlying causes because I'm guessing the approach depends on the underlying cause.

Eric: Well you're jumping the gun Alex.

Alex: Am I jumping?

Eric: And this is why I really like the framework. Do you want to talk about that, the framework that you came up with?

Helen: Yeah, absolutely. So just to give you a little background on the framework, what we did was we then decided to hold this expert panel that in 2011, which included dementia care experts across the country, sort of across all the guilds including geriatric medicine, geriatric psychiatry, pharmacy, psychology, social, et cetera and we came up with the skeleton of what would become the DICE. Everybody agreed on this algorithm, should I say in terms of how they would approach a complex behavioral problem or even a not so complex behavioral problem.

So the D stands for describe. It's interesting that Alex, didn't say it first because most often skipped. So people jump to agitation but that's really not a description. So if somebody calls you with agitation, your question should be, "Well tell me more about that." Because you really don't know whether that's somebody being anxious, somebody trying to leave the home, somebody yelling, you just don't even know what the manifestation is by the use of that word. So you really want to know who was there, when was it, what happened, you know sort of antecedents, behaviors, and consequences kind of thing but also importantly is anybody at risk. Because that's going to change the metrics for you if somebody is at risk, either the person with dementia or the person’s caregiver, that's the first step.

Alex: So, the first step is to describe, and get more detail about what is actually going on here when somebody uses a generic term like agitation.

Eric: Yeah. And I really like how, when we talked, you kind of walked me through this Helen a ways back about how to think about the D and I think you told me that you like to talk to caregivers and tell them, like to hear, play it out like a movie. How did you describe it again?

Helen: That's exactly right and in our training what we do is we tell them, think about how you would describe the Wizard of Oz to somebody that had never seen it somehow. Like they're under a rock and they have never seen the Wizard of Oz. And so the agitation would be to say the witch died at the end of the movie, but if you were really gonna describe that scene, you would put a lot of detail in it. And about the flying monkeys and the castle and how the witch sets the scare crow on fire and how Dorothy throws the pale of water and then the witch screams I’m melting. That gives you a lot more detail and a person could really figure out why it was so exciting, and similarly, I think we want caregivers to give us that kind of detail about what's happening.

Eric: I also love the idea of thinking about ... so they have these behaviors, so what? What are truly the consequences. I think of wandering as something that we often see like in our nursing home. They may be perfectly fine going back and forth between their room and the front, and it is great exercise for them, and I often wonder like, okay so what? This is great exercise.

Helen: Exactly. And that's part of it is who is at risk from this and if there's really no risk I think you have the change your calculation as to how it needs to be approached.

Eric: Alright. So, first step, we're getting a really deep thorough description so the D in DICE. Next step we start antipsychotics?

Helen: No.

Alex: Is this where we roll the dice? And how many times do I roll the dice? Who did you meet in Vegas when you came up with this?

Helen: No, no. It was actually we thought, what could we, kind of like SIG-E-CAPS. What would be memorable for people, and it was originally the 4D method and nobody could figure out which D was which so that wasn’t gonna work.

Eric: Alright. So, I is not initiate anti-psychotics, what's I?

Helen: I is investigate and so just like the shortness and breath example, we would want to figure out where this particular symptom is coming from and to try and make that a little easier for people. We think about a triangle of interacting parts in dementia, which is the person with dementia, the caregiver, and the environment. And the underlying cause could be coming from any one of those places or all of them. And so we try to think about things with the person, like could it be a UTI, could it be constipation. We think about the caregiver because that's really important. When you were just using the example of wandering. That might bother some caregivers more than others. And it might bother certain caregivers because they themselves are depressed or they themselves are highly stressed. And so you what to think about those contributors to it.

Eric: So I learned a ton by talking and it made me really think is a lot of our training as internists is to focus on the patient factors in this investigation. Is it a UTI, what can we do? Maybe we can educate the patient, which is always kind of strange because this person in front of us has dementia. How much education are you gonna be able to do. And we ignore these other two huge factors which is the caregiver and the environment. And if something is gonna change it's unlikely to be the patient. It's gonna have to be their environment or the caregiver.

Helen: Well, especially for caregivers. If we think about it family caregivers get no education, no training by and large. They're given a diagnosis and they're supposed to, as you said a minute ago, soldier on. And we really can train people how to communicate better, how to use improve in certain cases. You know communication. A lot of people who aren't experienced handling dementia. They try to quiz people or confront them. Dad is dead mom, don't you realize that. Which is never effective because the person has that belief in and sort of challenging that in a way makes people more upset. And so I think teaching people simple communication techniques, not giving too many choices at once. Those kind of things. These are things that are fairly easy to do once people have the education to do it.

Eric: What are some common environmental issues that you come across?

Helen: The most common ones are related stimulation, structure, or activity. I think over or under stimulation is really common. Under simulation we see a lot in facilities where people may have nothing to look at or no activities. They may be cranked in a Geri chair and not have much to do and they, I think the response to be anxious or yell help is actually kind of understandable in those cases. In certain home settings there may be over stimulation. People may be taking them out to family gatherings or parties where there could be sort of have caregivers that are caught between taking care of grandchildren and taking care of a spouse and so there's clutter all around the house, children's toys, exer- saucers, and all that kind of thing. And so the person with dementia may need to have a time out.

Eric: Alright. So we've done D for describe, I for investigate, we got two more letters in DICE, C and E. So what does C stands for?

Helen: C stands for create and the create step is pretty much just limited by people's imagination. What we always tell caregivers is they know the person the best. So, they can come up with the best creative solutions.

Alex: You know what? Some of the creative solutions we talked about on the previous podcast, we were wondering is this ethical? Things like deception, for example putting black tiles adjacent to the elevator entrances in nursing homes so that persons with dementia think, "Oh I'm entering a yawning chasm. I don't want to fall off this cliff. I'm not gonna get on that elevator."

Eric: What do you think about deception?

Helen: I choose not to call it deception. We call it stealth.

Eric: Stealth.

Alex: Stealth. That's a good framing. Other examples that come to mind of stealth?

Helen: There’s an example we give in training where a person is arguing with another resident over a seat at the lunch table. And so, the caregiver simply moves the person's tray over to communicate that that person should move to another seat without calling it out and making it so obvious. Does that make sense?

Alex: Yeah. And in the Netherlands they'd actually sort of recreated environments, whole environments like bus stops et cetera from like 50 years ago.

Eric: I just saw one of a picture of a person driving a fake bus and two people behind them having a conversation and they go in the bus.

Alex: That's brilliant.

Eric: Is it brilliant or is it lies, Alex?

Helen: I think it’s kind. I actually think that giving people an experience that they enjoy and that helps them to pass the time in a pleasant way is something that contributes to person-centeredness.

Eric: So, we're creating plans and these plans should focus on all three of those elements, right? The patient, the caregiver and the environment or potentially include all three. Is that right?

Helen: Exactly right. So you're operationalizing what you found in the investigate stage and you want to manage of course any physical problems you find, but beyond that you want to provide support to the family, to the caregiver, work on communication skills and very importantly create tailored activities.

Alex: Tailored activities, okay. Can you say more about what you mean by tailored activities.

Helen: Yeah-

Eric: Sewing? No.

Helen: Well yes that could be one. But a lot of what we find in facilities for example is kind of one size fits all activities where it's like everybody is going to sing this song. Or we're all gonna do this craft. And what we try to tell people is by tailoring the activities to something meaningful to the person, that's the best kind of activity.

Eric: We've done D for Describe, I for Investigate, C for Create, we're a creating a plan that it's the caregiver, the patient and the environment. We're done right?

Helen: Exactly.

Eric: Nothing else?

Helen: Not yet.

Eric: Not yet. We had an E.

Helen: Well, we always want to evaluate, and that's for a couple of reasons. I think you want to evaluate because we want to have people have some wins, right? So if you don't evaluate it's easy to move on to the next thing and say, "Oh, well. They're not wandering anymore but now they're doing this." It's really important to get a sense of how what people are doing is working or not working.

Alex: Yeah. So, are there specific techniques for evaluating. Is there like a 20 point questionnaire they should be filling out or is it? How does one evaluate?

Helen: So, it can be as complicated or as simple as one would want to have it. I think the neuropsychiatric inventory, the quick version, NPIQ is one that people can do. It's the one we use in clinical settings and in our trials. But for caregivers it may just be selecting on a numeric scale on one to 10 where 10 is the worst and one is the best. Kind of marking that a few times a week in a calendar, in an appointment book, and charting progress over time.

Eric: Alright. Let's say for instance, the DICE approach. I really ... I love it especially when it comes to words like agitation, really figuring out what do you mean by agitation, investigating where it comes from. How do you deal with things like apathy, which are like ... there's no like, "Oh that was a period in time where they're apathetic," but rather it's been going on for months or years where it's much harder to describe a specific scenario in apathy. How do you approach apathy, and again I just want to put a plug for that, JAGS article that you co-published this year which I thought was absolutely fabulous.

Helen: Thank you. Well I think with apathy, there's always something about these symptoms that , I guess I'm an internal optimist, that's potentially modifiable. And if you think about people with apathy, often the trouble is in initiation. So it's hard for them to initiate an activity, but if you can help set it up for them and get them started, they'll be able to do it. So, that could be one sort of creative strategy you could use.

Eric: Great. Where do medications fit? Is there a role for the antipsychotic here?

Helen: There's a role for medications. And so in the DICE approach we have three scenarios where they're first line, one is depression that is significant either in the person is not eating and they're not functioning or they're suicidal so we do believe in the use of antidepressants, particularly in early dementia where the depression most represents that in people without dementia. We also-

Eric: Any particular antidepressant that we should consider or all about the same?

Helen: I think for the risk benefit ratio, the ones we tend to use the most are Citalopram or Escitalopram.

Eric: Yeah.

Helen: And then the other two scenarios would be psychosis with risk, and why I say with risk is because in certain scenarios like for example Lewy Body Dementia, you may have people who are hallucinating but the hallucinations are what we would call benign, they're not bothered by them.

Eric: It's that deer in the corner that they actually like seeing.

Alex: Yeah, right.

Helen: Exactly, exactly. Well, we had one gentleman who was seeing a book case with Christmas decorations. It was like a display and he loved it. And it was the family who was saying take these hallucinations away. These are terrible. But he actually found it quite pleasant so we talked to him about how these are probably transient, they'd go away after a few weeks. We don't want to increase his risk of things by adding something like an antipsychotic.

So the third case would be aggression where there's harm or risk involved. So you might say, "Well, aggression there's probably always harm or risk." But that's not really the case because sometimes the person might be a 90 pound person whose sort of swatting ineffectively. That's not really a risk.

Eric: Are there any other medications that we should think about when we are creating these plans around dementia behaviors?

Helen: Well, I'm glad you asked. We actually recently published a paper on a expert consensus panel an International Delphi consensus, in International Psycho Geriatrics. So I could tell you a little bit about that if you're interested.

Eric: That will be great.

Helen: So in that paper we looked at both meds and behavioral approaches, and the behavioral approaches were again sort of the top recommendations for medications for BPS neural and for agitation, to use that word. It was the Citalopram and analgesia were the first line in terms of medications.

Eric: Pain medications.

Alex: Yeah there was a nice study wasn't there, maybe you were a part of this I don't know where they randomized patients to receive acetaminophen in the nursing home settings and dementia behavior symptoms were reduced.

Eric: Yeah, there was on just acetaminophen. The one everybody talks about too is the one that was the pain protocol that was like 70% just got acetaminophen. But then the next step was like an Opioid and it ended weirdly enough with Pregabalin. And behaviors improved, but again the vast majority of people just got acetaminophen. Because pain is unrecognized a lot in these individuals and-

Alex: Hard to diagnose.

Eric: ... hard to diagnose, super common-

Helen: Pain is vastly underdiagnosed and if you think about it as people progress with dementia, they can't communicate to you that their shoulder hurts or their knee hurts. So I think the cool thing about that trial was that they just empirically treated people. They didn't try to discern whether they had pain or not. They did that empiric treatment and it worked.

Eric: Yeah, they included people with behavioral symptoms like agitation, but pain was not an inclusion criteria. I love that study.

Alex: It makes so much sense. You think about the high prevalence of osteoarthritis in the elderly just because they have dementia doesn't mean they've forgotten they have pain.

Helen: Absolutely.

Eric: Didn't Alex, didn’t you write a paper about how arthritis is one of the-

Alex: More common. That was at the end of life.

Eric: That was at the end of life.

Helen: But it's very common. I always think about a patient I had. Came in with a caregiver and she said “Dad is just ornery and stubborn. He wouldn't get into the car” and as I kind of went further I examined him a little bit. He had a lot of guarding around his one shoulder and we ended up getting x-rays and he had a rotator cuff tear. And it was just astounding that she was kind of attributing this to negative, ornery, stubbornness when in fact the gentleman was in severe pain.

Eric: I want to say a huge thank you for also talking with us today. If people want to learn more about DICE or particularly maybe get more in depth training, how do they do it?

Helen: So, there’s some very good news there. They can go to our website, and there we have upcoming we have a website coming out where people will be able to get trained on the DICE approach.

Eric: That's great.

Alex: We'll include a link in the GeriPal post that accompanies this podcast.

Eric: Great.

Helen: Wonderful. And we also will be putting out a manual that accompanies that training and so people can either get the manual separately or they can do the training, but we're really excited about the training because we're gonna include some little sort of e-simulation videos of behaviors in there where people can make some choices and see what happens and we're very excited about it.

Alex: And is this primarily training for clinicians, for physicians, for nurses, nurse practitioners, for caregivers, who's the target audio?

Helen: We're focusing on caregivers and those would be the family caregivers or paid caregivers, but I always like to think that we're all in the same boat with behavioral training because a lot of us in the medical field don't get trained in this in our own course of work and so it could benefit anybody I think.

Eric: And I also want to say a big thank you for helping me out as we've developed the modules for CAPCI. And also to our audience, if you're interested we have about seven modules, three are up already ranging from disclosing a diagnosis in dementia to dealing with behavioral issues, mental health issues, symptoms, end of life issues, and I'm always shocked how many people don't know that they are CAPCI members but their institution has actually paid for CAPCI so if you don't know you're a CAPCI member just trying logging in with your email account for your institution and I'll tell you, you probably are one. So, check that out. Again, Helen thank you very much. Alex-

Alex: Thank you Helen.

Eric: ... do you want to end us off with a little bit more of Crazy?

Alex: A little bit more crazy. [Singing]

Eric: That was great.

Helen: That was great.

Eric: I want to also thank all of our listeners for joining us today. We look forward to talking with you next week and also if you have a chance, do us a favor, if you're listening on iTunes or any other podcasting software, please just take a moment and rate us, and give us any feedback that you have. Ok, good bye.

Alex: Bye everybody.

Helen: Thank you.

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Friday, August 24, 2018

Churning Patients Through the End of Life: A Podcast with Joan Teno

On this weeks podcast, we interview Dr. Joan Teno about her recently published study in JAMA titled "Site of Death, Place of Care, and Health Care Transitions Among US Medicare Beneficiaries, 2000-2015."

In 2013, Dr. Teno published a study that showed how good our health care system in the US promotes patient churn.   Despite positive signs of more hospice use and decreased deaths in the hospital, Dr. Teno found the from 2000 to 2009 we "churned" patients through more ICU visits, more hospitalizations, and more late transitions that are burdensome to dying persons in their family.   Dr. Teno's latest study shows us how we are doing now, extending that work to 2015 and now including Medicare Advantage (MA) plans.

So what did she find?   Well here is a summary quote from Dr. Teno of the good news:
"So, we see a continued decline in people dying in acute care hospital. Increase use of hospice to nearly half the decedents. And what got me excited about these findings was we saw burdensome patterns of care decreasing. So, people who spent less than three days of hospice decreased from 14.2% in 2009 to 10.8%. People having three or more hospitalizations the last 90 days in life decreased from 11.5 to 7.1%. The other thing is transitions between a nursing home and hospital and hospital nursing home nearly had a 50% reduction."
And here is the bad news (depending on how you look at it):
"So if you just take a look at that, it looks like we're heading in the right direction. One thing that we didn't see a budge in was, the use of ICU in the last 30 days of life. Now, is the glass half empty or is the glass half full? I have to admit I was pretty excited that ICUs wasn't going up."
But there is so much more to summarize, including the difference between traditional Medicare fee-for-service and Medicare Advantage plans that you should just listen to the whole podcast as Dr. Teno is always someone I learn a ton from.

Also, for more on this subject, check out our past podcast with Shi-Yi Wang, Assistant Professor in the School of Public Health at Yale, on his JAGS paper: "End-of-Life Transition Patterns of Medicare Beneficiaries."

by: Eric Widera (@ewidera)

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

Alex: This is Alex Smith.

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

Alex: Today we have an extra super special guest.

Eric: Super, super, super special.

Alex: Super special. We have Joan Teno who is a Professor of Medicine. She's in geriatrics and palliative care and she's at Oregon Health Sciences University up in Portland. Welcome to the GeriPal podcast Joan.

Joan: You know, I'm delighted to be here with you guys today. I can't think of a better place to be on a Friday afternoon.

Eric: So, we got some great topics to talk about today. But before we do, do you have a song for Alex to sing?

Joan: I think we gotta choose a song for our time, A Change is Going to Come, because a lot of us have been working hard to try to change the system to be both patient and family-centered and I think we're finally starting to see that change.

Eric: Let's get a little change is ready.

Alex: A Little Change is Gonna Come. [Singing]

Eric: Nice.

Joan: Yay! Excellent!

Eric: Change is coming because we have a brand new setup here with a new mixer so-

Alex: New mixer, we got new effects.

Eric: So if you hear a little echo in there that's the real change that's coming.

Alex: Some chorus. Change. Change in palliative care, changing the singing. We'll see, yeah.

Eric: Joan, thanks for again joining us today. What's spearheaded this discussion is you just released a paper in JAMA, which feels like an update to one that you had published several years ago about site of death, place of care, and health care transitions among US beneficiaries. We'll have a link to the current article on our GeriPal blog. It took me a while to think of the word blog.

Alex: We do have a blog.

Eric: We do. We occasionally post on that. But maybe we can take a step back, what got you interested in this subject?

Joan: I think when I started off doing this, a lot of my early career, like maybe the first five years of my career, was the failed SUPPORT study. And so as a junior faculty, what do you do after you're involved in a $28 million study, which has not one p value. And it's really totally significant. You can say I've had it quit, or you can dig in and try to really conduct some research to describe what's going on, what are the opportunities to improve.

Another avenue I took is creating measurement tools to try to have better measures to examine a person and family experience of end of life care or care for seriously ill. This paper is something I've been always fascinated by, is the changes with financial incentives and how it impacts the dying experience. And I have to admit, when I originally do the first paper in, 2013 it was, we were a little bit disturbed. We jokingly called it the Mor Mor Mor paper after our senior author Vince Mor.

Alex: The finding of that paper was that people are getting more of everything?

Joan: More of everything.

Eric: What I remember from that, it was a more churn, if I remember. The one word that came out to mind was churn when I read your paper.

Joan: Yeah. I've always come up with very interesting words to try to describe things. And I think the first paper I wrote on churning there was an editorial all about my decision to use the word churn. But that was quite natural for me. I grew up in rural Pennsylvania and churning butter was something we did and it was something I hated to do, and I just thought it was one of those futile things that you did. Why can't we just go to the store and buy it?

Eric: If I remember the order correctly, people were looking at positive indicators. Oh, more people are using hospice, less people are dying in the hospital. Hey, isn't that great? But if I'm remembering correctly, the epiphany after reading your article for me was at least, okay, site of death isn't enough. Because while people are not dying in the hospital, more likely to die at home and more likely to use hospice. They're using a lot of hospice just for three days or less.

They were using a lot of ICU and hospitalizations in the last 90 days before death. And a lot more transitions between different levels of care. Am I that remembering correctly?

Joan: Yeah. Actually, our tagline was more ICU, more hospitalizations and more late transitions that are burdensome to dying persons in their family. I think one of the things we want to make this point with this original article, that it's not all about where you die, it's about what happens in that utilization and that last month of life. And whether you're receiving care in the setting that you want.

So I've always been very concerned about using site of death as a quality measure. One of those concerns are, you could have someone who you manage really well over that last 90 days of life and they had to go into a hospice inpatient unit for the last three days because you couldn't control their pain at home.

I would argue that the 87 days before, where they were at home and where they wanted to be. That is really good care. You had to do change in the setting of care because of their need for aggressive pain management.

Alex: Mm-hmm. So that's terrific lead into this current paper. And just to set us up for this current paper, can you remind us that old paper covered what period and this new paper is different. I think not only in the period cover, but also that you've included Medicare Advantage people for the first, maybe the first time.

Joan: Well, I'm probably not the first person to use the Medicare Advantage data. But the original paper was 2000 to 2009. And what was really concerning to us was we saw a continued upward trend in ICUs going from around 24.3 to 29.2. We saw people making transitions in the last three days of their life from about 10% to 14%.

This new paper, we decided we want to do two things. First, we wanted to take the data out to 2015 and see what an early glimpse of the Affordable Care Act was and how it was impacting into life care. And then second big trend, despite the fact the people who created the ACA, they thought Medicare Advantage was going to startly sort of stable and decrease. Medicare Advantage continues to grow and it continues to be a very important part. And if anything, when you look at the Medicare Advantage data, there's some striking differences in terms of hospitalizations in the last 90 days of life, last 30 days of life, increased use of hospice. So, I think there may be some lessons for us to learn from some well-functioning Medicare Advantage programs.

Alex: Mm-hmm (affirmative). But before we get into the nitty gritty results, I wonder if you could say a little bit more about these Medicare Advantage data. I mean, so we work in the VA and we sometimes submit some billing type of codes because they ask us to, but not because we actually bill for it. So we don't have a lot of incentive. So, let's just say that sometimes they're probably not as accurate as they might be, just hypothetically speaking on the air for posterity, recorded, as they might be, say if I was in fee for service program and my income actually relied upon me billing accurately.

Eric: I don't know what Alex is talking about. I bill 100% accurately all the time.

Alex: All the time. All the time.

Eric: If you're listening Federal Government.

Joan: So, if there's any CMS spies out there they can attest that your billing's perfect. I think you're very right. There's a concern with using the fee codes around palliative care that people don't use them because they're not tied to reimbursement. What happened in 2008 and 2009 was CMS started requiring informational bills to be submitted from patients who had Medicare Advantage. And they did that. The calculation of disproportionate share and other GME typed funding. And so hospitals did have an incentive to submit that bill and to accurately portray what was going on, because it was tied to some funding.

Now, I think what the difference is, that bill to my understanding doesn't undergo the same data edits a fee-for-service bill would go. I'm very fortunate to work with some really wonderful colleagues at Brown, and they've done some looking into how well did these bills, if you used them, represent 30 day re-hospitalizations. And the positive predictive values is quite high. So, I was confident that we could use them with the appropriate knowledge limitations.

One, critical access hospitals don't submit these bills. And if there's a Medicare Advantage plan that takes care of nothing but MA patients in their hospitals, they're not going to submit these bills. So, as we report an article for the most part, this gives you a pretty accurate representation of what's going on in MA. MA has been that little bit of a black box, what's happening within the life care and MA. We don't know. So this gives us some early glimpses on it.

And also recall that, when you have MA you have to submit assessment data with the OASIS, and you must submit MDS data. So that gives you some glimpses on what's going on. It's kind of amazing when you think nearly a third of the decedents are covered by MA and previously we really didn't have knowledge on what's happening to those decedents, and what their quality of care is.

Alex: Yeah.

Eric: Great. And just for our audience, when we say MA we mean Medicare Advantage.

Joan: Absolutely.

Eric: So, Joan, well, what did you actually find in your paper?

Joan: So we found, there’s really two tracks to talk about. What's happening on fee-for-service and what's different among Medicare Advantage. So why don’t we take fee-for-service first. So, we see a continued decline in people dying in acute care hospital. Increase use of hospice to nearly half the decedents. And what got me excited about these findings was we saw burdensome patterns of care decreasing. So, people who spent less than three days of hospice decreased from 14.2% in 2009 to 10.8%. People having three or more hospitalizations the last 90 days in life decreased from 11.5 to 7.1. The other thing is transitions between a nursing home and hospital and hospital nursing home nearly had a 50% reduction.

So if you just take a look at that, it looks like we're heading in the right direction. One thing that we didn't see a budge in was, the use of ICU in the last 30 days of life. Now, is the glass half empty or is the glass half full? I have to admit I was pretty excited that ICUs wasn't going up.

Eric: Yeah. That's a big-

Joan: I initially wanted to say this was a positive finding, but wisely I was working for a wonderful set of editors at JAMA, who are really the best. And they said listen, stabilizing at 29% is probably not a good thing, so they really helped me think through the message. Because I was sort of thinking like that palliative care physician, "Well, at least it's not increasing!"

Eric: That's my thought about it.

Alex: And then let's talk a little bit about the Medicare Advantage and what's going on there.

Joan: Medicare Advantage, I think there's some lessons for us to learn from Medicare Advantage and just this whole notion of population-based health. Those findings that were really striking to me is compared to fee-for-service Medicare Advantage were nearly 10% less likely to be in the hospital in the last 90 days of life.

Alex: Yeah.

Joan: In the last 30 days of life, it went from 53.9 to 44.6. And they had a slightly lower use of ICU, by about two percentage point, was 27.4. They have probably one of the highest use of hospice and highest rate of people dying at home or the community. So I think, part of the million dollar question is, what is happening that's causing these changes? And I think it's really difficult to disentangle. A lot of people have been working really hard. And my hats off to the efforts to grow palliative care, The Conversation Project to promote advanced care planning. But for me, the one big key difference here also is the implementation of the Affordable Care Act and the 30 day re-hospitalization penalties.

I think that really caused hospitals to say, oh, wait a minute. I have to think about where these patients are going when they leave my doors, and how this might impact my bottom line. And I thought that provided a real ignitus for improving care at the close of life. So, I think it's a combination of the things. You got to have the right processes and structures in place. But then the financial incentives aligning in the right direction really are helpful.

Alex: Right. And Joan, when we're talking, just to be clear. When we're talking about those financial incentives and penalties for readmission, does that impact both fee-for-service Medicare and Medicare Advantage? Is that really more on the fee-for-service side of things?

Joan: It's more on the fee-for-service side. Although there are efforts towards really looking at what the 30 day re-hospitalizations are for MA, for Medicare Advantage.

Alex: Mm-hmm (affirmative).

Joan: I did some case studies as part of a program project grant that I was involved in. And I can remember going to these markets and talking to CFOs and chief transition officers, okay. Something I had not heard previously, a CTO, a chief transition officer, and they talked about they used to refer to something like 400 nursing homes and now they only refer to 40. I think there is some brilliance in CMS's move to establish a penalty for 30 day re-hos. Because I think everybody would agree, is not just the hospital's fault that's going on here with these 30 day re-hospitalizations. If anything, when you have a lot of transitions going to nursing home, and those transitions get further out past weeks, probably is like huge role in the nursing home has to play in that re-hospitalization.

But CMS took a macro economic perspective, who has the money? The hospital. Who should we penalize and have them fix it? The hospital. And I think in a way what we're seeing with some of these numbers is reflective of the fact that hospitals started to care about where that patient goes to after they leave their front door.

Alex: Mm-hmm (affirmative). You know Joan, I also want to pick up on this, speaking while we're on the financial incentives thread. For Medicare Advantage, we have higher rates of hospice use and it looks like they've been higher over time. And I think one of my mentors, Ellen McCarthy, when I was a fellow, had published similar findings in JAMA. The question is, what is the story here? Is the story that Medicare Advantage is trying to save money because they can take patients off of their books and put them back into fee-for-service Medicare, where they'll no longer be billed before these seriously ill, very sick patients who are likely to use a lot of services near the end of life? Or is it this is a great story here that Medicare Advantage is doing a terrific job at getting people who are seriously ill near the end of life into hospice?

Joan: So, I'm going to be that proverbial researcher and say we need more data. When have you not talked to someone who is funded and said but I need more money to study this. But I think we really need to look at the brief family members perceptions of the quality of care in MA versus fee-for-service.

I have a feeling what we're going to find is that MA does a better job, and I'll tell you why I have that hunch. I had a wonderful fellow from UCSF who did geriatrics at UW who published a great article in JAGS looking at the pattern of transitions in the last three days of life. Finding that, when you move someone in the last three days of life you have more unmet needs, more reported concerns and a lower rating in the quality of care. And the one thing that we saw that is a big reduction that's occurring is in these transitions the last three days to life.

So, I have to believe that MA is doing a better job by either referring to hospice or providing oversight. Because when although it's a carve out for the cost of that terminal illness, the MA plan is still responsible for the physician part of their care. So, my hunch, if I had to put my $5 down here, I would say that MA is probably doing a better job than fee-for-service because the incentives are aligning with the right care.

Eric: So who pays for hospice if they're getting Medicare Advantage?

Joan: This is actually one of the very interesting policy debates that hasn't been resolved yet. When someone is on Medicare Advantage, they carve out back into fee-for-service for the Medicare hospice benefit for all the care related to that terminal illness. But the MA plan still has some oversight on things that they were providing extra and also if your physician is in an MA plan, they still have oversight for that patient.

When we looked at this in the past, among those people who are live discharge from hospice, they go back to their MA plan. It's not like they're saying sayonara, goodbye. Like 99% of them go back to that MA plan. And we’ve published some other papers looking at life discharges and patterns of those life discharges and they're very similar in MA and fee-for-service. As of the most recent data we have, we're not seeing it. MAs have a very different pattern length of stay, or use of ... They obviously are using hospice more. But we're not seeing any of those things to suggest they're inappropriately using hospice services.

Now, like anything, if you change the financial incentives that can always change. And I think, one thing you have to be very careful is we're making this big transition of going from paying for more, to paying for value, but we don't want paying for value to becoming paying for less care. So we've got to be careful in managing this transition. It's got to be about quality. It can't be about just saving money.

Eric: And I know earlier, when we were talking about why does Medicare Advantage look better in your data? You said that there's some great people thinking about why this is and some great research, and we need more research around it. But just between you and me, and maybe some of our audience, what do you think it is?

Alex: The 12,000 listeners. Right.

Eric: Hypothetically.

Joan: So, hypothetically, you may want to ask, as a researcher, when you turn 65 in five years, are you going fee-for-service or Medicare Advantage? I will be registering with my local Medicare Advantage program which is Kaiser. I actually think they're innovative and they're doing a better job. And I think fee-for-service has incentives aligned with another hospitalization, another procedure, and not aligned with quality. And I think that's why it's so important that we have the right quality measures in place so that it's about value, and value is not just saving money. What's really important is meeting the needs of that seriously ill patient and their family.

And we're in a foot race here, because the health care system, it's out of the track and it's changing. And we quickly need to get the right set of quality measures to ensure that patients are getting the care that they need, and that we're not going to run into the problem of under-provision of care, which would be as equally terrible as over-providing care.

Alex: Mm-hmm (affirmative). Other messages from your research here?

Joan: Well, I think we really need to be very thankful for all the hard work that people are doing. Just look at the huge secular changes. First of all, the early innovators in hospice radically transformed end of life care in the United States, the second wave of big innovators for palliative care. I think it's really important that we celebrate that, but we also remember that we're not done yet.

I actually think where we are in our history is 1974 of the Medicare hospice benefit. And my prediction is when I qualify for Medicare in five years, there's going to be a new alternative payment model that will help to provide access to palliative care and appropriate support services for people who are seriously ill. It's really key in the next five to seven years. We're going to shape that policy and then we're going to be stuck with it for about 20 or 30 years. So, we need to work really hard and make sure we get it right. We don't have a chance for failure.

My message is, let's all really figure out how to do it, how to do it right. Make sure that the incentives align with providing high quality care and not just avoiding hospitalizations. Making sure that patients get the care that they need, and their families are supported during this very difficult time period.

Alex: Right. So it's really a call to focus more on policy now, because what your paper is demonstrating is the impact of policy. Both policy in terms of hospice policy, policy in terms of incentivizing hospitals to prevent readmissions, which has also stimulated the growth of palliative care. What are the next steps that we should be working on in terms of policy?

Joan: Well, from my standpoint, I'm trying to work with RAND and a wonderful group of persons to come up with some measures that captures a seriously ill person's perceptions of the quality of care so then we have actionable reports. And I think that's something that we're on our way with the CAHPS Hospice Survey, and we now need to extend that work into the seriously ill. I think one of the biggest things that we need to think about is how do we measure what we all say so important, this notion of goal of concordant care. I think it's somewhat frustrating. We all know what it is and what we need to do, but how to measure it is still really complicated. Because you don't want to introduce measures that says, "You must have resolution of your advanced care plans by the second visit to that palliative care physician, or that second visit to that family practitioner."

Eric: People keep on trying that.

Alex: Trying that, exactly that. Yes.

Eric: It bugs me so much when I see that.

Joan: So we have some work to do. But, you know what's really so exciting? Is, we have a workforce here that is in palliative care that wasn't here 30 years ago. I swear, you could have put us all in the same ballroom, and if a bomb hit that ballroom you would have lost the entire hospice community, entire community of hospice and palliative care researchers and physicians.

We now have probably some of the most exciting investigators out there who are doing really good work. And I'm just very excited to watch where this field goes. It's such a neat time period to be in. And this is really our chance to make change. We've arrived and we really need to, to really take advantage of this and now really head towards really trying to get the policy right.

The good news is there's a lot of us who are working very hard to try to make sure we get the policy right. Like, anytime you’re dealing with policy, it's gonna be some compromises, but you try to get as right as much as possible.

Alex: So, Joan, I got to ask, in our email exchange, when we're trying to find a date and set up a topic and choose a song, you'd mention that you are considering titling a talk that you're going to give at the upcoming annual Kathy Foley retreat, “Why we don't need any more Joan Teno papers”.

Joan: Yeah.

Alex: I thought, "Oh, no. What are you saying? We need more Joan Teno papers."

Joan: Actually, I'd like to argue you probably don't. I actually have really tried to, where possible, become part of working with master contractors regarding policy in regards to CMS and the creation of alternative payment models and the evaluation of those alternative payment models. And to do that, you probably are gonna see my output of papers decrease, and that's good. I actually think that's what I should be doing at this time point in my life. You don't need 292 from me. What we really need to try to do is spend the next five years really focusing on doing a really good evaluation of these various new models that we're testing, and then think about how to implement them in such a way that they provide high quality care.

Eric: Well, I gotta say, another good part of that is that me and Ken Covinsky were joking that it would be nice if you saved room in JAMA and New England Journal for some other people.

Joan: Gladly. It will be gladly done. I should tell you that everything I do is part of a wonderful team effort. About 10 years ago, the team I work with, we do two things on every JAMA, New England Journal, or such paper. We have chocolate cake and a bottle of champagne. I'm very fortunate to have about nine bottles of champagne hanging up my house, and we've had a lot of really good chocolate cake. And most recently, with this paper coming out, I celebrated my 60th birthday with two of my co-authors having chocolate cake at a local restaurant in Seattle.

Eric: That's wonderful.

Alex: That's great.

Eric: So, for our audience, can you name two or three things that we should really be paying attention for from a policy perspective that's going to impact either geriatrics or palliative care?

Joan: So, I think we need to be very focused on payment models and making sure they're adequate to provide that care. We should be very focused on who's in the denominator and who gets access to these services. And then third, we need to really make sure that there's really actionable quality measures in place.

I think we got a little bit waylaid with hospice in that we started initially focusing on process measures. And when you look at those process measures, did someone get pain assessment? Did someone get a dyspnea assessment? Very important process of care, but they topped out really quickly and they're not providing actionable information about quality.

So, I think in the next five to seven years we've got a lot of hard work to go. But what's really exciting is we have to work force to do it. We have the rising very smart investigators who are really good scientists, who are going to be able to do this work.

Eric: Let me also ask you about the new Hospice Compare website. Where you can actually look at a bunch of hospices, see how they're doing, kind of like Nursing Home Compare. I gotta say, I look at the data and I have trouble differentiating based on that data. Like, what's a really great hospice? What isn't? Your thoughts on that?

Joan: Well, I think I've already been pretty clear on a blog in health affairs that I think the process measures on the hospice items that are topped out. And that probably, we need some new measures and we need new work on quality. My sense is looking at the data from the CAHPS Hospice Survey. It's doing a good job of sorting hospices out. So when we look at processes of care that we would expect to be related to quality, we're seeing that information and we're seeing those associations.

The one thing you have to remember about hospice is, majority of hospices are doing a really good job. It's really only a small percentage of hospices who are usually small, they usually have a very different tax status that are related with big concerns. Not making visits in the last two days of life, not providing adequate care to these patients, and probably eight or nine percent of the people.

I think when you take a look at the quality measures that we reported previously, in JAMA, back in 2004. We saw really striking differences among people dying in hospice services, compared to people who are dying in a nursing home or dying in acute care hospital. So there's really some large big effect sizes here. Now, we're just not seeing that extreme variation of hospices, so that's why I think we really need to move to a population-based instrument that measures into life care.

And for your, readers, listeners out there, I have a two year old Labradoodle who is looking me and saying-

Alex: Welcome to the GeriPal podcast, Labradoodle.

Joan: Bean!

Eric: Wait, what's his or her name?

Joan: His name is Bean. I'll give you another weird fact. Since 1990 I've named every one of my dogs from my favorite drug, which is caffeine. So we have Java, we Mocha, we have Cappuccino, and we now have been Bean, and he's a jumping Bean. So he's looking at me and giving me the evil eye, saying, "Let's go outside and play chuck it!"

Eric: I got one last question for you, Joan. With the recent change of how hospices actually get paid, kind of less than the middle more on either side. Have you seen or heard of any kind of changes on how hospices are deciding who enrolls or how they care for patients? Any untold or positive aspects of that recent change?

Joan: You know, I think that's really the subject of some work. It's recalled that that was implemented in 2016 and the data is only getting to the point where that they can start really looking at it. The one thing I would really ask the listeners to this podcast is, I just think the visits in the last two days of life are so critical and are strongly related to perceptions of quality care.

I've been doing focus groups now probably, for more than 30 years. And the one consistent thing that comes out in those focus groups is, for those persons who are dying at home, family members talk about how hard it is to be the caregiver and to bear witness to someone who they love is dying. And that those visits are just really critical to really improve and enhance the quality of care. Obviously-

Eric: Bean agrees with you.

Joan: Bean is looking at me and he’s saying, “It's really critical that he gets outside to play with his balls.”

Alex: Bean is like, "Stop the podcast already!" All right.

Alex: All right Bean, we'll give you your wish.

Eric: Well, Joan, I want to thank you tremendously for joining us today.

Alex: Thank you so much Joan.

Eric: That was wonderful. Great insights and really great paper. And thank you for saving a little space in those journals for us in the future.

Joan: I have no doubt that you guys will do even better job of filling the journals. And hopefully we'll start telling more of a positive news story on how things are improving.

Alex: And I'm hoping it's not true and that we do see more Joan Teno papers.

Eric: Well, Alex, do you want to end with a little bit more of the song?

Alex: A little bit more of the song here. [Singing]

Eric: Again, thank you Joan. Thank you Bean, and thank you to all of our listeners for joining for this GeriPal podcast. Do us a favor, if you're listening to us on iTunes or any other service, please take a moment and rate us. Unless of course, you don't like us then yeah, you don't need to. But again, we look forward to talking with you next week.

Alex: Bye folks.

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Thursday, August 2, 2018

Number Needed to Tweet: Podcast with Charlie Wray

This week we talk with Charlie Wray, MD, Assistant Professor of Medicine at UCSF, about why clinicians should use social media in their professional lives.  Charlie is a hospitalist and the Associate Social Media Editor for the Journal of Hospital Medicine.  His arguments for using social media are germane to all clinicians, however.  "Number Needed to Tweet" is the title of his recent grand rounds on this subject.

Charlie is a natural at explaining why we should use social media in our daily professional lives. He also works hard to debunk common reasons for avoiding social media (we couldn't help but chime in).  He often does so with stories, as with the story of how a patient of his need a certain kind of undergrament (read "adult diaper") not carried by the hospital.  As he was walking back from Walgreen's after purchasing one for the patient, he tweeted this: 
And received 55 responses, 201 likes, and 21 retweets.  Many of the responses are a mixture of heartwarming and humorous, and worth a read.  Some favorites - "gave a patient my playstation 2 so he would stay in the hospital," "I hand delivered a chocolate chip cookie every day to get a patient to take a daily injection of penicillin for neurosyphillis,"arranged for dying patient to get married in the hospital."



Listen to GeriPal Podcasts on:

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

Alex: This is Alex Smith.

Eric: Alex, who do we have in our in-person studio audience?

Alex: In our in-person studio audience we have Charlie Wray, who is Assistant Professor of Medicine here at UCSF, and he works here at the San Francisco VA, and he's a Hospitalist. He's also a social media editor at the journal of Hospital Medicine, right?

Charlie: That's right.

Alex: Welcome to the GeriPal Podcast, Charlie.

Charlie: Thanks, guys.

Eric: Welcome! Before we talk about, the title again was, for this podcast is, Number Needed to Tweet? Is that right?

Charlie: That's right.

Eric: We always ask all of our guests for a song for Alex to sing.

Charlie: Yeah, so looking at Twitter, you have a little bird as their little icon, so I tried to think of a band that had a bird in it. Thought about The Black Crowes, one of my favorite bands growing up as a kid. And I think one of the songs, if I was ever stuck on a desert island and could only listen to one song for the rest of my life, I think this one might be one of them. Which is, She Talks to Angels, by The Black Crowes.

Eric: Nice! We should do that. Ever heard of Desert Island Discs, it's an old BBC show? Where they ask people, what would you bring to a desert island?

Alex: If you could only listen to one thing, or one disc for the rest of your life, what would it be?

Eric: There was one with Dame Cicely Saunders.

Alex: Wonder what she said? That's good.

Eric: Before we go more on a tangent, you wanna give us a little love?

Alex: Little bit of Black Crowes here. Terrific choice. [Singing]

Eric: I could tell Alex likes that song because he did the extended version in the beginning. That was fantastic.

Alex: It's too good to do a short snippet!

Charlie: You should keep going.

Alex: I even cut it a little bit!

Eric: This entire podcast is just gonna be that song. Over and over again.

Charlie: That's fantastic. That's great. Great job, Alex.

Eric: So, Number Needed to Tweet. Charlie, how did you get interested in social media, and especially social media and academics.

Charlie: Great question, and I get this question quite frequently. I think it sort of stems back to when I was a resident. I was a good resident, I was sitting at home, I'd be reading these really interesting articles that I would find really fascinating. My wife, who's a pediatrician, was a resident with me, I would sort of lean over to her and I would say, "Check this out! Look at this. This is really cool." And she would give me this really sort of disdainful look of like, I don't care. And she would literally say, "I don't care." So I would be left with reading things that I found really interesting and I wanted to share it with people, and I could share it with my co-residents, but just not at all hours of the day, of course.

And I was on Twitter, and then I sort of noticed, hey other people are doing this. Other people are sharing the things that they found interesting. So I started posting articles that I found interesting, along the way, people would respond. So it was a way for me to sort of have a conversation with people about medical topics that I found really interesting. I noticed that it was a place where I could put my voice out there, but I could also listen to other people along the way. So it was a good give and take. So that's when I discovered it. Then, just like as most people get into it, you just start off slow, then you get more and more and more involved over time. That's how I kind of got involved.

Alex: So let's bring it to the contemporary conversation. I remember in your talk about this, and you give grand rounds recently with this same title, you said that there are a number of barriers to people using social media. Physicians and other clinical providers and health care professionals, in particular. Could you talk a little bit about that?

Charlie: Yeah. So there are a few things that I think people find somewhat intimidating. The first is the overall intimidation factor, the idea of like the whole world is listening to you as you're trying to throw your voice out there. So I think people get intimidated by that idea. Is the idea of it taking too much time out of their lives. I think a lot of people already, your mental bandwidth is already is sort of stolen from your work to your home life. And this is one extra aspect that I think people try to add into their lives and I think they fear that it might sort of take over their lives in some regards.

And a lot of people have asked me about that. So how do you balance your social media work with the things that you're sort of doing? And it just takes a little bit of will power, I think, just like anything else. So I think people becoming overwhelmed with it is another issue that I think people sort of run into along the way.

Alex: Yeah. It's one thing we hear quite often, Eric and I actually just did a teaching session for the new palliative medicine fellows about social media and palliative care. And one of the major barriers that they brought up was, how am I going to find time for this with all of the other things that I have to do, and I'm trying to cut back on screen time?

Charlie: Right.

Alex: Isn't this going to make the problem worse?

Charlie: Right. I think that's a fantastic question. And this is the way I rationalize it, and I will put the emphasis on the word rationalize it. My time on social media, I've really tailored my stream, I've tailored what I listen to and what I pay attention to, to be following medical individuals and medical topics. So, my rationalization is that, when I'm on there, I'm kind of working at that point in time.

Alex: Yeah.

Charlie: I am keeping my pulse on the medical community, trying to figure out, what are people talking about? What's new in research? What's new in med ed? And that influences my work. So part of me rationalizes as my time on social media as part of my work at this point in time.

Alex: And I think that's what we generally do, as well. We focus on using social media, Twitter in particular, it's really a professional focus for us. And we save time, actually, by letting others kind of crowdsource. Like, what is the thing I should be reading, because everybody else is talking about it? And then contribute to that with our own individual take.

Eric: Right. Do you find that helpful, too?

Charlie: The crowdsourcing?

Eric: Yeah.

Charlie: Absolutely. The thing I try to convey to people is, I've read hundreds of articles that I never would have found on my own. From journals that I just don't subscribe to, that I don't even know exist. That have sort of come my way because somebody highlighted it along the way and said, "Check this out. This is really interesting." So, absolutely. I've been exposed to ideas and topics that I wouldn't've found on my own. And it's certainly influenced my practice and It's certainly influenced the way in which I think about medicine, as well. So, absolutely.

Eric: What about the argument, who really wants to hear what I have to say? Why should I go on social media, 'cause like, who am I? Who am I to tell people what's interesting or not?

Charlie: Yeah. Man, I think everybody has a story. I think everybody has something to say. I had that feeling and I still have that feeling. Who am I to say something and anybody just sort of listen to me? But I think everybody has a story. I'll give my one example.

So, yesterday, we have a patient on my service who required a certain type of diaper, and we didn't have it here. So, what did I do? I went down to Walgreens and I came back and I got them for him. And I tweeted out, because I thought this was an interesting idea of, what are special things you've done for your patient, to keep them in the hospital and to keep them happy? Tweeted that out there just to sort of say, what do people do? And I had, I think, 40 or 50 comments already about what people are doing to sort of keep their patients in the hospital. I found that they have a story. I think everybody has a story to tell and bring to that conversation. I was completely enlightened by almost every single one of them. I think it just shows the good in the world with that example.

Alex: Terrific. So we've talked about some of the main barriers, and you've talked a little bit about reasons to do this. Could you give us a little bit more about reasons to do this? Maybe first starting with people who are in clinical practice but not researchers.

Charlie: Good one. So for the individual who is not a medical educator or a researcher, I think one of the areas that you can really benefit from social media is using social media, again, as keeping your finger on the pulse of what is happening out in the world. Because I think a lot of clinicians end up sort of operating within their bubble, within their institution, doing their own thing. Then, once a year they'll come out of that bubble. They'll go to a national conference. They'll hear what's sort of going on. And then they go back into their bubble. Yet I've often times argued that social media is a way to sort of stay outside that bubble constantly. From, what trials are coming out? What do people think of outcomes from these trials? And these are things where I think, as individuals, we can think about them, but I'm not an expert on a lot of these things.

So I think hearing how other people sort of interpret the new medical literature, I think is a great way for people to, again, sort of extend their boundaries and not be just sort of insulated. So I think as clinicians, it's a great way to just hear what other people are doing and or practicing.

Eric: Yeah, I agree. I think there's a lot of different types of social media, too. So, just podcasts, I listen to Curbsiders a lot, great podcast. Just to stay up with internal medicine topics. And sometimes, like, I loved their hyponatremia topic.

Charlie: Yeah!

Eric: Oh yeah it was great!

Charlie: Joel Topf gave that one. And he’s fantastic, absolutely.

Eric: It was as amazing.

Alex: As amazing as hyponatremia can be.

Eric: It was. It was great. But like, learning from all different types of whatever. If you like the audio component, listen to podcasts. Or Twitter for short, bite-sized stuff. Or blogs if you like the reading. There's another one that came out on the New England Journal, I think it was the New England Journal, about just sharing stories and the importance of just sharing stories.

Charlie: Right.

Eric: Using social media. Especially for people who may not have a lot of colleagues that they're working with.

Alex: Right. People who are in rural areas may not feel a part of a community. You may be the only palliative care provider in the region. But you can connect over social media with other people who are. Well, how about the research folks now? What's the reason to do it for the researchers? Because I am a researcher. I publish and I'm done, right? Isn't that it?

Charlie: Yeah.

Alex: No?

Charlie: Right. So I have a nuanced viewpoint on how researchers should engage with and on social media at this point. So, 10, 15 years ago I think the paradigm was, you wrote your paper, you sent it in. It was published. It was printed. It went out. Everybody walked out to their mailbox and picked up the newest issue of JAGS and read Alex's paper. But we don't flip pages anymore to find information, we scroll on the computer screen at this point. My argument at this point is you spend, on average, people spend months to years on a single paper. You submit it. It's sent out there. And then, who reads it? There's been studies that show, on average only 10 people are ever going to read your article. Half of all articles, only three groups of people are going to read them. The authors, the editors, and the reviewers.

Alex: That is sad.

Eric: And the author's mom.

Charlie: And the author's mom, right. Right. And the author's mothers will, of course, read it. So I feel like you're doing a great disservice if you just stop at the publication point and don't help disseminate your research. And I use social media to disseminate my research, my colleagues' research, research that I think is actually engaging and interesting.

Eric: But as a researcher, aren't you supposed to be a neutral party that just delivers the facts and let other people deal with all that dissemination and interpretation.

Charlie: Yeah, I wish. I wish that would be the case. But if you've ever read a paper, and often times when you read a paper, and you're like, well why didn't they think of this? Why didn't they do that? And what about this? You know, social media allows you to engage researchers on a level that you couldn’t. Again, 10, 15 years ago, certainly you could email them, but very few people probably did that. 30 years ago, you could have written them a letter, but nobody ever did that. But now, when I see a paper written that I think is really interesting, and I have a question about it, and I can find that author out there, I can engage them very quickly on that.

Eric: Yeah, I also just clicking on the Altmetric scores to see what are people saying about this article that just came out. Often times looking through the Twitter timeline for that article using the Almetric score, just to see, how are people interpreting this?

Alex: You had some really interesting statistics in your talk. In fact, there was a study in your talk that you cited about journals that were promoting articles using Twitter alone versus Twitter plus a visual abstract. Maybe we should back up for a second and talk about visual abstracts and what that is. What is a visual abstract?

Charlie: Good question. Visual abstracts are, if you sort of think about a poster presentation at a national conference and look at those posters. If you just took that and made a digital format of that, but with the idea of making it much simpler, only focusing on the sort of the outcomes, the results, and the conclusions, and then using visual cues to sort of help people remember that information. That's a visual abstract. Visual abstracts were created by a guy, Andrew Ibrahim of the University of Michigan, probably 2 years ago. In the Twitter sphere, they've gone gangbusters in the past year and a half. Last I checked, over 70 journals were using them to help disseminate their work. Several institutions use them as well to sort of spread their word as well.

As you mentioned, at the Journal of Hospital Medicine where I help as a social media editor, we've been using it for about a year and a half right now, and we've noticed anecdotally and empirically that tweets that have visual abstracts that sort of have visual cues with them, do much better, they're disseminated much further. And Andrew Ibrahim actually did a study in Annals of Surgery that showed that tweets that had a visual abstract with them, were tweeted almost 8 times more frequently than tweets that didn't have them attached.

Alex: That is impressive. Eric, you've done some similar work with JAGS. Do you want to talk about?

Eric: Yeah, definitely. We've done visual abstracts. I think the challenge is just from a, like I run the JAGS social media content, is that I don't have the time to do visual abstracts for everyone, so it's really trying to get authors to do it. I think the other thing that we've seen is it doesn't just need to be a visual abstract, anything visual. So figures, trying to increase the visual aspects of our posts. Significantly, I think that doubles the amount of people who interact with our content.

Charlie: Right. I think there's some good sort of behavioral science work that shows that if you don't catch someone's attention in something like 30 seconds, you've lost them. I think that's probably dated, I think you've got like 5 or 6 seconds nowadays.

Alex: Yeah, less.

Charlie: So I think the visual cues are a great way of trying to do that.

Eric: So I think this does create one of the things that people are worried about is, again, as my role as a neutral party of disseminating facts versus am I like a newspaper editor that just wants to throw out the flashiest, catchiest title to bring more people into reading my article? How do you balance that?

Charlie: Yeah, that's a fantastic question. I think as a scientist, as someone who attempts to remain as objective as possible, whenever I do a post a visual abstract or anything to that notion, I try to remain extremely true to the study. And we, at JHM, have sort of come up with a policy where I don't change the wording. I don't take anything from the author, or rather, I don't extrapolate from their paper, and we use exactly what they have presented to us. So we're not trying to build up a paper, and we're not trying to sell it by any regards, we're just trying to present it in a visual formatting that people will hopefully engage in sooner and quicker.

Alex: Yeah, that's a great perspective because this isn't about sensationalism. The goal isn't dissemination for dissemination's sake. It's about clear communication of the essential findings of the article to as many people as possible. And by doing it clearly using visual abstract and means that are quickly accessible to people, you may draw in more people to do that research. But that doesn't mean crossing that line into sensationalism and just for the sake of getting hits on your Twitter feed.

Charlie: Right. It's a slippery slope, certainly. But we try not to fall down that slope.

Eric: What about for educators? Is there a role in social media?

Charlie: Absolutely. And I will use you guys. Eric, I used you in my example in my talk a little bit, and many of the sort of program directors and fellowship directors here at UCSF. The primary modality that I think educators and mentors, which I’ll sort of group in here, is how to support your students, your mentees along the way. And there is nothing better than highlighting their successes out there. I think people feel that nice sort of, it's the virtual pat on the back from your mentor if they post your work. If they post a picture of you standing next to your poster, or of you on graduation day, or the good work you're doing in the clinic. It's just a fantastic way, I think, to support your trainees. And I think medical educators, and the ones who I've seen, do it really well, often use that as a way of doing that.

Alex: People feel honored and respected and important when you take a picture of them alone, and then when you take a picture of them and then disseminate it on social media, they really feel acknowledged. And it's pretty simple to do.

Charlie: It really is.

Alex: But it's very meaningful for your mentees.

Charlie: Absolutely. I've seen other folks do this a lot. If you've got a substantial following and you have been deemed a clinical connoisseur, somebody who is sort of good at clinical messages, people will follow you for your academic knowledge. So there are a few guys I can think of off the top of my head who are really good at interpreting and reading EKGs, so they are always posting tidbits and facts about how to be a better interpret EKGs. So that's another way in which you could sort of feed information, I think, to your learners through sort of asynchronous ways and through the nontraditional ways of teaching as well.

Eric: Any other reasons why we should be more involved as physicians or clinicians? Because we're busy with our clinical lives. Any other reasons why we should get involved?

Charlie: Yeah, this is something where I've gone back and forth on this over the past several years. And I think we should be involved. Don Berwick wrote an article in JAMA about a year ago, sort of really advocating that we're at a point where physicians for many, many years have not really had a voice, either socially, even in a lot of the medical debates. And he had this just very poignant article with the idea like, how do we get involved as physicians, and how can we do it? And if you sort of look at all the options that we have, are you going to call your senator, are you going to sort of get involved, are you going to go to Washington or anything like that? And probably not.

But it's as simple as sort of tweeting something out for something that you believe in, be it patient advocacy, be it of health policy, be it a clinical issue. I think that's just one way of getting your voice out there and being heard and being acknowledged as a physician. I think a lot of people have argued we're not as vocal as we could be, and I think this is just one extra avenue in which we can.

Alex: Yeah, one extra avenue, and it's part of our professional responsibility. I'd say as a profession, we have a responsibility not just to care for our patients but also to think about the larger health policy context in which that occurs, and advocating for policies that promote good care for our patients.

And we can do that through social media. And we can also counter misinformation that's disseminated via social media, such as death panels, which first appeared on Sarah Palin's Facebook page. So we need to meet that misinformation where it occurs, and disseminate thoughtful, appropriate, accurate information about what our services are and polices that promote them.

Eric: But it's hard enough just being a good clinician. Now you're adding all of these other things that I should be doing.

Alex: Eric! If Trump can do it, you can do it!

Charlie: Why aren't you awake in the middle of the night tweeting, Eric?

Eric: Occasionally I am. No, but I'm serious. I think this is the big challenge, is that just over the last, I finished med school in 1998, there was very little talk about quality improvement, and now we're supposed to be quality and safety experts.

Alex: You finished med school in 1998?

Eric: No, I started med school in '98. So I guess 2002. Alex and I were in the same graduating class. Sorry, I lose track of time. But even like 2002, how many times did we hear being quality and safety experts? That was not part of our med school training. And as the years came up, it just seems like, in the last 15 years, now I have to be experts in all of these different things. And now you're telling me I got to be an advocate too. Like, what the hell.

Alex: Yeah, life's hard man. Being a doctor is hard.

Charlie: It sounds like I think there's a lot of stuff on burnout out there that maybe you should look into.

Eric: I'll work on that. #burnout.

Charlie: I don't have a great answer. I struggle with it as well. I have a full-time job just like you guys. I have kids and family at home that I would love to spend more time, and this certainly adds something extra to it. But I find a way to fit it in, and I think it's somewhat possible.

Eric: Yeah, and I think of actually going back to the burnout literature is actually finding that meaning in one's work is exceptionally important to prevent burnout. And advocacy, safety, all of those things could actually add to one's wellness rather than distracting.

Charlie: Right. Yeah, it comes back to one of the things that I often sometimes say about Twitter and social media. So I think one of the fallacies is that a lot of people sort of enter into social media and think, the goal should be getting the greatest number of followers that you possibly can. That's not what I do. To me, it's about finding your culture, finding your following, finding your group. Because the other reason that I actually find social media engaging and helpful in my life is I can find people who are struggling with life and work just as well as I am. And so sometimes you're like, "Man, I just had that paper rejected again." And I scroll through my Twitter feed and everybody else is talking about their papers they got rejected. And it's just, it again, it expands my community outside of the folks who I have sitting right next to me. And that's helpful in my life.

Alex: And it's Bob Senter who I think is at UAB, likes to say, he has his own blog and he tweets quite often. He likes to say, "I do this social media stuff at the interstices of my day." Very medicalized analogy there. The little spaces in between, in between meetings, during lunch break, just flip to it and re-tweet and have a take on this. Posting, "I'm bringing diapers back from Walgreens for my patient. What are you doing for your patients?" That takes like a minute.

Charlie: And that's how I utilize it just as well as I'm sure you guys are.

Eric: Alright, you've convinced me. I should go on social media. What do I do? Where do I start?

Charlie: So, there's an unfortunate term, but people use it frequently. So, do you lurk? So you get on, you set up your account, and what I oftentimes tell people is just hang out. Follow, find 10, 15, 20, 30 people that you know at some national level and start to follow them. See what they're saying. See how they're actually saying those things. And they will re-tweet people or follow people or give you hints as to whom you should be following. And you will just start following individuals along the way. And it was once told to me that it takes about a year for someone to get really comfortable in social media, from just lurking to posting original tweets. And at first I was like, "Nah, that's too long." And then after about a year, I was like, "no, that's about right." It took me about a year to build up the courage and sort of do it. And you'll find your voice, you'll find the topics that you want to be known for. And then you'll find your group and I think find your tribe in there. But I think it just takes time.

Alex: Yeah it takes time.

Charlie: How about you guys? I mean what do you ... you guys are out there, what do you guys do? Or how would you recommend-

Alex: We do a little podcasting and blogging and tweeting-

Charlie: You may have heard of our podcast.

Alex: But, yeah we do a lot of stuff.

Eric: The thing is that I think the fun part has been that we've always ... it's such a low barrier to try, that if you fail, who really cares?

Charlie: Yeah.

Alex: Yeah.

Eric: And from doing our blog to being on Twitter, to doing these podcasts, like our initial podcast was with a really bad microphone and my computer and that was about it. So the entry barrier was exceptionally small. And that was true for our blog too. And I think it's helped me, academically progress as well. I think most people know me because of the things I've done in social media.

Charlie: Right. Yeah, and getting to one of your points you just sort of mentioned, sort of, if you fail who cares ... I think a lot of people sort of worry "well if I send this tweet out and it's a bad one, what happens? Are people gonna hate me?" I'm like, tweets have half lives of like 3 hours. So if you say something that's either offensive or wrong, or it just wasn't something that came out correctly, it's gonna be gone and in the ether for most individuals, in about 3 hours. And so, you always have the chance to start over after that.

Eric: With a caveat, like, I remember one of Ken Covinsky’s tweets that he sent out once, was around over-the-counter statin use, 'cause it was being considered statins over-the-counter, and he wrote a tweet just saying "NOOOOO" and then he got a call from the New York Times, from Paula Span, to talk about statins over-the-counter. So, you never actually know when that small tweet actually may lead to a much bigger commentary. And we've seen that with our blog posts, where it can get picked up, and next thing you know it's on NPR.

Alex: Yeah when Paula Span was here on our podcast, she said, as far as she's aware, everyone in the New York Times is on Twitter.

Eric: Yeah, every journalist-

Alex: Every journalist in the New York Times is on Twitter. Because it's perfect for journalists. These little snapshots of information they can scroll through. And many of our interviews with New York Times, or USA Today, or other traditional media, have come through things that we've posted on social media.

Charlie: Right. No, I've had the same experience. People have reached out to me, said "I noticed you said this, can you offer a comment?" Or, "what's your perspective a little bit further?" And it's good stuff, they're fun things to comment on and I've appreciated that. And I think that's also to the advantage of social media, is the idea of people are hearing my voice, hearing what I have to say, and I get to comment on it in those more traditional methods as well.

Eric: Why should journals be on social media? You're doing this for Hospice of Medicine, right?

Charlie: Right. Yeah. There are two numbers that I oftentimes quote for this, so the circulation for, and I use this 'cause I refer back to Andrew Ibrahim's study. The circulation capacity for the Annals of Surgery, which is a large journal, is I think a little over 1,300 individuals, yet they have over 35,000 followers on Twitter. So, there's the old Willie Sutton quote of, "why did you rob the bank? Because that's where the money is." And if you're a journal trying to get your voice out there, you gotta go where the people are. And to me, again as I sort of refer back, we don't flip pages anymore, people scroll through computers so that's where you have to be.

Alex: You had an interesting metric in your talk about low impact, medium impact, and high impact. And I wonder, where GeriPal fits on that spectrum.

Eric: Of course, high.

Alex: How did you come up with that, and-

Charlie: Oh yeah, so I didn't come up with it, that's not a Charlie Wray original, I think that's a Jonathan Serbino et al., he's ... there's a bunch of ER docs who sort of came up with this, as you sort of allude to Alex. So how do you, as medical educators, or clinicians, or researchers, how do you sort of measure your impact on social media? And they sort of categorized this. And essentially, low impact you have a certain number of followers, middle impact you have more, and then of course high impact you have a lot of followers. I give you guys high impact, you know I'm not a geriatrician and I actually follow you guys and I enjoy your posts, and that's good.

Alex: Good answer. Right answer, you can stay.

Charlie: I'm giving you-

Eric: We will not delete this podcast.

Alex: But from here it's a short hop to, is there anything in it in terms of promotion? Like for people who are in academic settings, is there anything ... like, why would I do this rather than write an article for a journal that is the traditional currency of promotion?

Charlie: Yeah. We are currently in the wild wild west of how social media fits into academic promotion at this point in time. There are a few places that I think are starting to recognize this a little bit more. Mayo Clinic is one that is now using social media engagement as a metric for promotion. I don't know their internal metrics with regards to that, but they are certainly ... they've been doing this for couple of years now. How do you do this? If you sort of ask some of these guys who've been on social media for a while, it's quantifying your metrics, so if you're putting your work out on ResearchGate, how many people are following you there? If you're a medical educator and you're putting your slides up on SlideShare, how many downloads are you getting there in a year? And you put that into your promotional packet. And granted you just can't put those numbers out there, I think you have to explain your niche, who your audience is, what your platform is, and what you're trying to sell. I think that's the beginning stages of trying to integrate your social media utilization into your advancement. I think over the coming years as people realize social media is a powerful tool, I think it'll be more and more accepted. How we measure that impact? I think we're still trying to figure that out.

Eric: Number of national elections that I've influenced.

Alex: Good! Well this is another important issue, because I think a lot of people are afraid of social media because of manipulation of the social media in order to influence the recent Presidential election. And you were asking when you first came in, before we started recording, who purchased this equipment? I just want to make sure that we acknowledge this was purchased by the Russian FSB, and some guy named Putin.

Charlie: Vlady.

Eric: Through multiple shell companies-

Alex: Multiple shell companies.

Charlie: That's awesome, that's great, that's great.

Eric: No, but a lot of people actually stopped using things like Facebook, and actually-

Alex: I cut down on my Facebook ... I didn't delete it but I cut down on my use of Facebook after ... I did! I did, and I'm coming back to it slowly.

Charlie: Yeah. My response ... When I gave Grand Rounds there was a question that sort of said, was alluding to what you're getting at there, and my response very much is I kind of act like an ostrich, where I stick my head into the ground, but my hole, again, just contains individuals who, you know, physicians, health policy wonks, medical educators, clinicians, to where all the nasty stuff that certainly exists within social media, I really just put my blinders on and try to stay away from that. So I just try to isolate myself away from those things.

Alex: And any rules or suggestions for people who are interested in posting on social media in terms of stuff you maybe shouldn't put on there? Or shouldn't post pictures, tweets, et cetera? Seeing as it's gonna be cataloged by the net, Library of Congress, for all time.

Charlie: I think if you just follow the general rule that if you're in a crowded elevator could you say this out loud? Is a general rule that I sort of use. And then, like anything else, as you're typing out your tweet, read it a couple of times, of course, and then sort of step back and go "how is this going to be interpreted by a general audience?" Or the audience that I'm sort of also aiming at as well. And then of course your photos, I think just being very wary of how things may be interpreted by other individuals. I think is just the larger tenant that I've always adhered to, and what I've always sort of been taught. And then just the final thing I always tell people is be nice. You know this is a place where I think there's a lot of vitriol, and I think people can sort of, it can get sort of angry out there at times. But I’ve found that if you're just nice and cordial people will respond to you much more, I think you'll get much more engagement.

Eric: Great. Any other last practical tips that you have for somebody who maybe is just starting? In that first year, that you have for them, to dive deeper into this?

Charlie: Yeah. One thing I've always sort of advocated for is find a social media mentor, and what do I mean by that, is ... I'm not gonna direct message Eric and "will you be my mentor?" But-

Alex: Everyone. If you're listening to this podcast, direct message Eric.

Eric: I do actually rarely check my direct messages, so just tweet me.

Charlie: Someone's waiting for that response right now.

Eric: Damn you, Eric! Vitriol!

Charlie: But using Eric as an example, the way Eric expresses ideas, or the way he tweets it, if that sounds interesting to you, watch how he does that for 3, 4, 5, 6 months. And then mimic that in some form or fashion. The other idea is don't just post a link, tell me what you're thinking about that link. You know I'm following you because I wanna see how you're interpreting things, or what you think about that topic. And then the other thing I always say is that you'll notice if you follow me, I rarely post anything without a photo at this point in time, mainly from what we talked about earlier, so if there's an article, take a snapshot of that article, throw it out there. Highlight the things that you want people to really key in on. And I think that will engage an audience, people will want to talk to you at that point in time, more so than otherwise. And then just find your voice, and know that it'll take a little time along the way.

Eric: Great, well I want to thank you for joining us. It was a fascinating discussion.

Eric: Thank you Charlie, that was terrific.

Charlie: This is great guys. Thanks for inviting me over.

Eric: Maybe before we end we'll do the 3 and a half hour version…

Alex: Yes! 3 and a half hours! That's what I'm looking for! Extended, She Talks to Angels, Black Crows.

Charlie: That's awesome, I love it.

Eric: The first 2 hours is just the acoustics.

Alex: All right, here we go. [Singing]

Eric: And with that, I just want to thank everybody for listening, we look forward to having you join our podcast next week, and we'll also see you on social media.

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