Wednesday, June 20, 2018

Destination Therapy: A Podcast about LVAD decision making with Dan Matlock and Larry Allen

On today's episode we talk to Larry Allen and Dan Matlock about decision making around destination therapy.  No this has nothing to do with your summer vacation plans.  Rather, we talk about how individuals with heart failure decide about whether or not to pursue "destination therapy" with an Left Ventricular Device, or LVAD.

Larry Allen is a Transplant Cardiologist at the University of Colorado and Dan Matlock is a General Internist, a Geriatrician, and Palliative Care doctor at the University of Colorado.   We talk with them about their recent JAMA Internal Medicine article “The Effectiveness of an Intervention Supporting Shared Decision Making for Destination Therapy Left Ventricular Assist Device” or the DECIDE-LVAD Randomized Control Trial.  We also discuss other topics including their pretty amazing (and free) website called which includes not only the LVAD decision aid, but there's also decision aids on ICD's, cardiac resynchronization therapy and defibrillation, and one for colon cancer.

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

Alex: This is Alex Smith.

Eric: And Alex, who are our guests today?

Alex: Today our guests are Larry Allen, who is a Transplant Cardiologist at the University of Colorado. Welcome to the GeriPal Podcast, Larry.

Larry: Thank you.

Alex: And our other guest is a recurring part of the GeriPal Podcast. I think you've been a host at least, if not a guest, in the past. Dan Matlock, who's a General Internist, a Geriatrician, and Palliative Care doc at the University of Colorado. Welcome back to the GeriPal Podcast, Dan.

Dan: Thank you.

Eric: Welcome, Dan. Dan, you know the drill. Song request for Alex.

Dan: I think one of my favorite songs is While My Guitar Gently Weeps by The Beetles. So I think I'd like to request that.

Eric: All right. Alex.

Alex: [Singing]

Alex: All right, that's enough for now. Well I got most of the lyrics, but the alternative was what? My Milkshake and the boys?

Eric: My milkshake brings all the boys to the yard. Is that right, Dan?

Dan: Yeah, I would've loved to have heard that as well. Or Iron Maiden's The Number of the Beast, those would have also been acceptable alternatives.

Eric: What's the theme there, Dan, what's the theme?

Dan: I'm not sure there is one.

Eric: To challenge Alex is the theme.

Alex: Eric was rooting for My Milkshake brings all the boys to the yard.

Eric: I strongly objected to My Guitar Gently Weeps. I wanted My Milkshake.

Alex: And I loved While My Guitar Gently Weeps because I've always wanted to learn that song. And I got some of the lyrics right, but we'll see if I can do better at the end.

Eric: We gotta spice it up for the younger audience, Alex. No more of like '60s and '70s songs.

So on today's episode we were hoping to talk to you both about your JAMA Internal Medicine article “The Effectiveness of an Intervention Supporting Shared Decision Making for Destination Therapy Left Ventricular Assist Device” or the DECIDE-LVAD Randomized Control Trial.

So maybe before we go deep into the subject, can you describe a little bit, both of you, kind of how you got interested in this subject?

Dan: Well, this is Dan, I'll start. I got interested in shared decision making generally just as a resident with experiences with patients who seemed to be getting things and offered things and apparently had no idea what they were getting into. I initially got into defibrillators and then I was lucky enough Larry Allen moved to Colorado and he and I started collaborating in 2008, 2009. And it's been just a really wonderful collaboration so that he pulled me into the LVAD space with the shared decision making work.

Larry: Yeah and this is Larry. I kind of came at it from a different angle. I've always been interested in patients who are living with chronic heart failure who then start to fail more typical therapies like drugs or even pacing devices and then have to either decide when they're appropriate for hospice or whether if they're a candidate to pursue major therapies, like transplants or artificial heart technology. So I started out trying to predict that and then realized that the real interesting piece of that was actually trying to grapple with the uncertainty around it and how patients have to make these tough decisions about options that aren't necessarily what they want either way. Which is to pursue hospice, which may not be their first choice, but yet to pursue an LVAD which can be life saving but can also be really burdensome, expensive, and doesn't always have great outcomes.

So that's how I got at it and Dan was really an expert in our institution thinking about how patients deal with those kind of tough decisions.

Alex: You know I think it'd be helpful for some our listeners who may or may not be familiar with what an LVAD is and what destination therapy is, to talk, just briefly introduce what is an LVAD and what is destination therapy mean.

Larry: So there are about six million people in the U.S. who have heart failure and each year approximately maybe 50 to 100,000 of those patients will progress to essentially dying from their heart failure. And those patients are really left with the option of dying from their heart failure or pursuing kind of heart replacement therapies.

The issue for heart replacement therapy is that transplants are fairly limited. There's about 3,000 suitable organs in the United States every year. And then the only other alternative is durable or permanent artificial heart technology. And the current technologies have gotten a lot better, but they still have some limitations and some design characteristics. So they were first kind of designed just as short term therapy to get people to transplant, but now the current devices can last five, 10, or even 15 years longer.

But the other problem with them is that they, really the ones that work well are just plugged into the left ventricle and sit beside the heart. So the patients really have to have left greater than right sided heart failure and they have to be able to take anticoagulations. So there's a certain percentage of patients who may not be transplant eligible who are dying of their heart failure who might be a candidate for a left ventricular assist device. And if they're one of these people who can't get a transplant, but who could potentially get a VAD, then if they proceed with that they would get a surgical implant of an LVAD and live with that the device for the rest of their life, typically until they die. And we call that destination therapy.

Alex: So the destination is ...

Larry: Rather than the destination being transplant, the destination is the device itself and ultimately death.

Alex: So we talked about what an LVAD is and what destination therapy is, and talked sort of about the scope of the problem. Tell us what you did here in this study.

Dan: So this is Dan. I'll summarize it here. We spent several years, even before this study making a decision aid. We made an eight page decision aid and about a 25 minute video. We went through 28 versions of the paper tool and five versions of the video tool testing this with lots of patients and clinicians to try and get it so it was balanced, that is it wasn't trying to encourage or discourage people from getting one of these devices. Trying to make sure it was understandable and readable and accurate. And that's really the process of developing the intervention. And that was several years of work, including a lot of qualitative interviews to even understand what patients needed to know.

Once we developed that, then we applied for this grant from PCORI to study this in six programs around the country. And we did what we called a combined effectiveness and implementation study, where we wanted to look and see if this decision aid was effective and we wanted to understand actually how do you implement this in the real world practice. So we had sort of this interesting step-wedge design, which allows us to look at both effectiveness and implementation.

I mean in terms of effectiveness we were trying to see if we could help patients understand things better. So we measured knowledge and we measured if the treatment they chose was actually concordant with their values.

Alex: And just backing up a little bit to the intervention itself and the decision aid itself. Could you tell us a little bit more about what was involved in the decision aid, how much time it took, and how much effort was required on the part of the participant or other folks?

Dan: So we ... Most of these patients were in the hospital, so they're a bit of a captive audience. It would probably take somebody a half hour and an hour to go through this. We did not allow our study staff to give the decision aid out. That's part of the implementation design. We instead chose to try and encourage the sites and the clinicians at the sites to develop a process to give the decision aid out.

And each site did that a little bit differently. One of the things we studied was how did one site do it differently than another site. The only rule we had was they had to give it out before they made the decision, before they had the discussion with them. So it sort of depended. Some people, some sites weren't able to use the video and only used the paper tool, at least one site was like that. Other sites would use the video and bring a TV into the room. Other sites would use it on the phone. So it was a little bit different for each patient at each site, depending on how each site chose to implement the tool.

Alex: And the pamphlet is available in the supplement to the publication in JAMA Internal Medicine. Is the video also available for folks to see?

Dan: Yeah, we have them on our website. And I'll plug it,, they are available and free to use. We have a terms on there that people can look at. We want people to use these things for clinical work. We want to protect the intellectual property for our own research, but other than that, we want people to use it. So it's out there.

Larry: Yeah, you know Dan and our group, we've actually done work in other areas too. So that patient website includes not only the LVAD decision aid, but there's an ICD decision aid and other decisions around EP devices for heart failure. And we also have a decision aid for sacubitril valsartan for heart failure. There's a colonoscopy screening decision aid there. And atrial fibrillation stroke prevention as well.

So there's a couple of different tools, we'd love for people to use them for their patients.

Eric: And what's the link again?


Eric: Awesome. We'll have that link on our GeriPal website associated with this podcast as well. Maybe we can actually spend just a minute talking about, so you talked about some of the things that you were trying to achieve in this study. What did you actually achieve? Like what did this ... How did this decision aid compare to the control group?

Larry: Well I'll go with that. Dan kind of highlighted that this was a combination effectiveness and implementation trial. So for the effectiveness we wanted to see whether the decision aids when given to patients and their caregivers by the LVAD or mechanical circulatory support team, whether those patients decision aids actually helped patients. And we looked at decision quality. So are patients making good decisions about whether they should or should not get an LVAD given their own values, preferences, and goals in the context of their medical realities.

And we found that it did. So patients were more knowledgeable about the decision they were making, including the LVAD device and the alternatives in the period of the study where they were getting this decision aid compared to the usual care or marketing materials.

And we also found that the patients who got this decision aid were more likely to choose LVAD or not consistent with whether they really wanted to be aggressive with their care and were willing to undergo a major surgery and be hooked up to an electrical cord and take care of a machine, versus rather they didn't want to do that and wanted to kind of live what time they had left with a little less interface with the medical community and less risk taking. So we found that people who were aggressive were more likely to say they wanted a VAD and the patients who were kind of not interested in that were actually more likely to turn it down. So we consider that important.

A secondary end point we looked at was how often did patients go on to get an LVAD. And we found that actually once we implemented the patient decision aid, that patients look like they were less likely to go on to that. So we were before implementing the decision aid about 70 odd percent of patients went to get an LVAD and afterwards it was closer to 56%. So it did seem like, not only were patients making more informed decisions, but perhaps they were a little less likely to proceed with this potentially life saving therapy, but also potentially burdensome therapy.

Alex: And it's also interesting to note, I see in one of the figures here, that there was actually substantial variation across the sites in terms of reduction in implementation of an LVAD for the intervention group compared to the control group. How do you put that finding in context?

Dan: I can take that one. That's an interesting thing about the implementation design. And our implementation evaluation which we're actually in the process of writing and publishing now showed some interesting things. But there's big site variability and there's local cultures and how these sites handle LVADs. And you notice that site six, that didn't really see much change. They were also our largest site. They were in the mixed methods evaluation. There was some stuff that came out around aggressiveness and things that was interesting to note. Just different levels of how these sites do things. And each site had different challenges and issues. So we wanted to show that in the paper because I think most randomized trials see site differences like this and I think and honest way of reporting that is to actually show that and then try to understand that, rather than pretend there's not site differences.

Alex: Right, it's wonderful. And it's real world. I mean, if you got to site six, and you have heart failure, you are gonna get an LVAD. Basically, if your heart failure is bad enough.

Eric: Independent of your values.

Alex: Right. And if you go to some of these other sites, you were less likely to get an LVAD to begin with and much less likely after receiving the intervention. Those sample sizes are small caveat, caveat, caveat et cetera. But that reflects sort of the real world heterogeneity as we know that there are tremendous differences in culture of care at specific sites, but also the patients who go to one site versus another site. So it might be those different factors at play.

Dan: Yeah, that's exactly right. And just to get a little wonky we adjusted, in our statistical analyses, we adjusted for these site differences because they could've been such a powerful effect. I think it's important to note that for those who might be wondering.

Alex: So big picture, you found that decision quality improves with the decision aid intervention implemented sort of as the sites want to implement it in the real world. And that overall, as a secondary outcome, LVAD implantation decreases. Now can you talk about the linkage between those two outcomes? And that do you think that as people make better, more informed decisions fewer people will be choosing LVADs? Seems to follow, but I wonder if you have any thoughts on that area.

Dan: Ya a couple. I think there's some nuance there. I think there's a lot of literature in the shared decision making world that people often choose a less or the rate of people choosing the more "aggressive" option goes down after becoming more informed, but that's not always true. I think it's different and I think knowing what the right rate is is a little bit difficult.

Larry: That's what I was gonna say is that our goal is not to decrease utilization of LVAD necessarily. I mean it can be a life saving therapy and I think is very appropriate for carefully selected patients and whom that's kind of what they want to do. But part of the reason we chose the destination therapy population is that, that's a population who has contraindications to transplant. So they're usually older, they often have multi morbidity, or some other reason why they can't get a transplant. Often times those reasons they can't get a transplant are also reasons why they may want to be a little less aggressive with their care.

So I think it was an interesting population, first off, and it highlights that even pretty amazing therapies within the context of older patients and geriatric medicine that they may not play out exactly the same as their build. So I'm not surprised that it went down a little bit. But again, like Dan said, what the right number is, I think is a little unclear and our goal isn't just to decrease resource utilization, it's actually to help people get high value care and reduce low value care that's inconsistent with their goals.

Eric: Yeah I think it's fascinating because it feels like as a geriatrician you start seeing these people who get interventions that probably have been tested mostly in younger populations, not really in patients who require a whole lot of caregiver support for other things, are often institutionalized. And we start seeing issues when, like these LVAD patients are starting to have to think about institutionalization and nursing homes or board and care, and nobody really wants to take these people because of the liability issues of what happens if their LVAD runs out of battery. Have you guys seen that? Is that just-

Dan: We've had that problem in Denver a little bit too. A lot of nursing homes are scared of these patients because they don't know what to do with them and so they'll say they'll have to go to LTAC. And the same is true with hospice. We've done some other work looking at hospices and some hospices are comfortable with LVADs, but many are not. Largely because they don't know what to do. So when you have a destination device, I remember one of the transplant workers would always say, "Every destination device will eventually become a hospice device." And if you don't have hospices that know how to do that, then you can get yourself into trouble there too. I think that is indeed a challenge.

And just another little plug, one of our colleagues in our group, Colleen McIlvennan, one of her areas of interest is how do you help hospices take care of these patients once they get there? I think what we're finding is it requires communication, the hospices are gonna need some help from the heart failure team. You can't just send the patient to hospice and expect the hospice to know what to do. Although hospices are willing and heart failure docs are willing, they just need that conversation about it.

Eric: I think we just got our title for this podcast. Every destination device becomes a hospice device.

Dan: You know we do try to avoid that messaging though, because as we go out and we try to implement to the heart failure and cardiology world, we really are, like Larry was saying, trying to make the clear argument that we're just trying to help patients make the right decisions for them. And it's really interesting just to contrast the LVAD to the defibrillator, which we spend a lot of time working in. There’s a lot more, I would say skepticism in the world about shared decision making in defibrillators because it's a less aggressive procedure. People see it as pretty life saving. And almost every heart failure doc I've talked to about the LVAD say things like, "I would never want to put this into somebody who doesn't fully know what they're getting into."

And I think most heart failure docs they're like primary care docs, they see patients before, they see patients after. And so they see the success stories and they see the ones that don't go well at all. And they just want to make sure patients know what they're getting into. And as far as shared decision making implementation goes, this was as easy as I think it will ever get. Because the programs were so hungry to do this.

Eric: Let me ask you ... In your decision aid, are the, or somewhere along the process, are the practical aspects of where you can live with these devices, is that ever discussed? Because that is something that's incredibly important to patients and their loved ones is not just will I love longer, but where can I live? And I guess that's probably really complicated because that also depends on these micro environment settings as well.

Larry: Yeah it's a nice question. I mean we actually make kind of the medical decisions around LVAD implant including destination therapy within the existing long standing multi disciplinary conference that we call Transplant Listing Conference because so many of the issues about follow up and adherence in the case of anticoagulation for LVADs overlap with the issues we've had in the transplant population. So we have these conversations about whether we should even offer an LVAD to patients. And those conversations are not only very complicated, but they often focus on kind of social determinants of health as well as just the logistics. And we've had multiple people where ultimately they're not offered left ventricular assist device because they don't meet certain requirements, which include a dedicated caregiver. So we don't put in an LVAD in somebody who says that they're gonna be fine and they'll live in a nursing home or an LTAC. And then do it on their own. Obviously the anticoagulation issue and being able to do regular follow up is like really critical in this population because thrombosis and bleeding are really the number one cause of death after implant.

And then we have issues like we'll have patients that don't have a three prong plug in their mobile home. And until that's addressed, they're not a candidate. Which is not a usual question I think we ask for most therapies that we offer. And then what's really somewhat interesting about Denver is, Denver is a pretty major metropolitan area over two million people, but we don't have a lot of large cities nearby. So this is the only LVAD transplant center in Colorado. But there's no heart transplant center in New Mexico, Wyoming, Montana and so we draw from a large area. And so the logistics for these patients, especially older patients that have some comorbidity, it starts to factor in to whether this is a good or a bad or a not so good therapy for these patients.

So those are interesting conversations, but sometimes really tough when patients are struggling, don't want to die, but really only have this as their option.

Alex: So I want to ask you about next steps. And by way of introducing the question of next steps, read a sentence from your paper that I think introduces this point. "Despite strong efficacy data, uptake of decision aids in routine practice has been slow." And you address this in part, I think that's true, that's absolutely true that decision aids are great, but we're just not using them very often in practice. Right? And you address this in part by having this combined implementation and effectiveness trial to figure out how to implement this in real world settings.

Where do you go from here after this study? And what's the uptake then of using this decision aid outside of the study settings?

Dan: Well, so this is exciting. This is where we've written some grants to do a broad scale dissemination project across the county. We haven't heard if that's gonna be funded yet, but even short of that, while we were conducting the trial we made a decision to put it on our website. And we had over 30 programs contact us asking us to use it. Including a program in Canada that took our decision aid, the paper version, and translated it into French. And then we've learned that the country of France is not allowed to give out industry developed materials to patients, so we heard that over 75% of the LVAD programs in France are using the French version of our decision aid.

Alex: Wow.

Eric: Are they flying you out there, Dan?

Dan: I'd like to. I mean I'm not trying to toot our own horn, but we're really excited about this. But it gets to the point I was making earlier that this is a space where people are actually hungry for this. I think in the shared decision making world this may be a bit of a unique example because I think the docs and the patients and everybody sort of agrees, we don't want to do this to people until they fully know what they're getting into. And anything that helps that we will embrace. Because I'd argue that LVAD is one of the most aggressive things we're doing in medicine. And for those that where it works, it works really well. At least for a few years. And so it's really their big, big trade offs.

You know there's 170 programs in America and we're hoping to be able to do some dissemination work across all of those programs and do some science around dissemination to see how many of those programs we can actually get using the tools. That's an exciting piece of this work.

Alex: That is very exciting. Anything to add, Larry?

Larry: No. I'm glad you pulled that statement out because I think that's one of the problems with academic medicine and what we do is the concept of the ivory tower, that we studied these principles that make sense within narrow context and contrived study designs, but I'm also a clinician, Dan's a clinician and we know what clinic looks like when you got a full schedule and a sick patient comes in and sets you behind. The last thing you want to be doing is spending a bunch of time using some tool that somebody told you that was a good thing to do, but doesn't really fit within your work flow and doesn't make sense.

So we have spent a lot of effort, not just designing really good tools, but designing tools that really make sense for the practical real world work flow of what we do. And we haven't mastered that, but at least we pay attention to it and we're trying to iterate in ways that make it better all the time.

Alex: Hey before we finish here, are there any other aspects of this study or implementation that you want to mention?

Larry: Well as you know medical decisions are not just about the patient and the clinician, they are about the family caregivers and the other people involved. One of the things that's a little bit unique about destination therapy LVAD is that, again at our program and many programs, you can't get an LVAD if you don't have a dedicated family caregiver. So it's a nice setting from which to think about the involvement of families and loved ones in medical decisions and the down stream consequences. So when we conducted this study not only did we prospectively enroll patients and collect questionnaires and other data from them, we did the same thing with their dedicated caregivers, who were largely spouses.

And we have a paper that should come out in the near future really detailing the findings from that work, but the kind of top line results are that, you know this is a tough decision not just for patients but also their caregivers. They share a lot of the same emotions and challenges. And at the end of the day, the caregivers are mostly very excited and committed to participating in the decisions and the after care because they want to help their loved ones. But at the same time there's this tension that exists where they're being asked to do a lot and sometimes being asked to do things they're not comfortable with.

And so recognizing that tension I think is pretty important to this kind of research. And also just to delivering this kind of clinical care. So that was a really fun part of this and we have almost 200 caregivers who participated in the study at baseline, one month and six months.

Eric: That's great. I can just imagine the anxiety component that caregivers have when you have a device that if it doesn't charge, what happens? Even if everything's working out fine, it just always wondering in the middle of your sleep, whether or not something's going to go wrong. That must be scary.

Larry: Yeah, you summarize exactly what we heard from some of them. Again, most of them really want to do it and be involved, but to recognize that that is not all butterflies and roses. That there's some tension there is important.

Eric: Go ahead, Dan.

Dan: I was gonna say, we heard from four different caregivers that they would do things like sleep in another room because they were scared to sleep next to the patient because they didn't want to accidentally kick and unplug it. But they would use things like a baby monitor to listen. Like the degree of hyper vigilance these caregivers live with is, sounds a lot like what you hear with caregivers of patients with dementia.

Eric: Yeah. Even probably more so too because it's always a threat, there must be like PTSD style symptoms in these caregivers.

Dan: Exactly. There's data on that. There absolutely is PTSD in some of these caregivers.

Eric: Well on that happy note ...

Alex: Back to going to France.

Eric: Let's talk more about having you guys go to France for some visiting professor gigs. And make sure you include us.

Alex: Right.

Eric: Because Alex can sing, so, Alex, how about end us up with a little bit more of a song.

Alex: Little bit more?

Eric: This time in French, please. So we they get invited for a visiting professor gig, we do too.

Alex: All right. [Singing]

Eric: Nice.

Dan: Nice.

Alex: That's such a fun song to play, Dan. Thank you for that.

Larry: It's one of my favorites too.

Dan: Is it really? That's awesome.

Larry: Oh yeah, I love that album.

Eric: Well I want to thank both Dan and Larry for joining us today. It was a great discussion about a really important topic. I want to thank all of our listeners for joining us as well. We look forward to talking with you more next week. And to all our French listeners, bonjour.

Dan: Thank you, guys.

Alex: Thank you.

Larry: Thank you.

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Wednesday, June 13, 2018

Dementia Specific Advance Directive: Podcast with Barak Gaster

In this weeks GeriPal podcast, we interview Dr. Barak Gaster, Professor of Medicine and General Internist at the University of Washington in Seattle.  Dr. Gaster felt like there was hole in the advance directives landscape around future planning for people with dementia.  People with dementia experience a fairly common set of complications and decisions around feeding, loss of independence, and loss of ability to make complex decisions.  His dementia specific advance directive has specific sections for care preferences for persons who progress through stages of dementia, including descriptions of mild, moderate, or severe dementia.

So many key points he makes in this podcast, you'll have to read below or listen to the audio to learn more!  

Two interesting notes I'd like to draw your attention to:
1. The directive is free to use, does not require a notary signature, and works synergistically with the POLST, Prepare, and Video decision aids.  He makes a major point about the need to "de-legalize" advance directives.  Right on.
2. He describes how he published on the idea in JAMA, and was disappointed with the uptake.  It wasn't until Paula Span wrote about it in the New York Times for the New Old Age that downloads and uptake of the advance directive exploded.  Attention academics: it's not enough to publish your work, you have to get the message out to the people!


by: Alex Smith, @AlexSmithMD

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

Alex: This is Alex Smith.

Lynn: And this is Lynn Flint.

Eric: And, Alex, who is our guest today?

Alex: Today we have Barak Gaster, who is a Professor of Medicine and General Internal Medicine at the University of Washington Seattle who has created this unique advanced directive for dementia.

Eric: Wait, wait, wait. Before we get into that, Alex, you're skipping the song. So, Barak, we always ask our guest to give Alex a song to sing to start us off. What's the song for today?

Barak Gaster: How about Young Pilgrims by The Shins?

Eric: Great, great.

Alex: All right, we're just gonna do a little bit of the song here and more at the end. [Singing]

Barak Gaster: Yeah, that was great.

Alex: Shins are great. Shins are great.

Eric: So why that song?

Barak Gaster: It's just always been one of my favorite songs. When my daughter was about 10, for some reason she got really, really into that song and we just listen to it a lot in the house and it's just always been a big favorite.

Eric: Okay, Alex. What were you saying, something about dementia directives?

Alex: Something about advanced directives for dementia.

Lynn: How did this discussion come about, is that the question? How did this meeting come about?

Alex: Yeah, tell us more.

Lynn: We're gonna ask Barak how he came up with the idea for this project, but I know I got an email from Barak a couple of months ago saying, "I stumbled across your talk on YouTube," which shocked me. I gave a talk about palliative care for people with dementia to a community group down at UC Irvine and I had recently read about Barak's ideas to create these new advanced directives for people, should they develop dementia. So we were gonna meet and talk about that and I thought we should do it on the GeriPal Podcast.

Alex: Terrific. So, Barak, tell us how you developed the idea. What drove your interest in developing an advanced directive for dementia?

Barak Gaster: I've been doing primary care for about 20 years now and have always tried to make advanced care planning one of the big parts of what I do and for sure one of the most difficult situations that you get into doing advanced care planning is advanced care planning for dementia because it's just such a long time horizon where people have gradually decreasing quality of life and have lost the ability to make medical decisions for themselves. They were just time and time again just really uncomfortable, hard, really heart breaking situations where families are just struggling to try to guess what their loved one would have wanted in terms of goals of care once they develop moderate or severe dementia. So just play out let's try to imagine your loved one from 10 years ago looking down on themselves now and what do you think that they would say that they would want for themselves and just started to realize, gee, what if we had actually a directive that somebody had filled out 15 years ago so that instead of guessing what they would want, we actually had something written down that could help guide us.

Lynn: It sounds like there was something really specific about dementia that struck you, that there was a gap in terms of advanced care planning. Could you talk a little more about that?

Barak Gaster: Yeah. In some ways, you say, gee, do we need a directive for COPD and a directive for end stage renal disease and why does dementia really jump out as really a prime diagnosis disease where advanced directive could really help and it really is this incredibly long time horizon that people live with often really decreasing quality of life, decreasing ability to interact and be independent and do all of the really basic activity, self-care things that people think of as really part of who they are and their identity. They lose that for many, many years in a way that is really unique. That there are not many other common conditions in which that comes up. The current standard advanced directives that are out there focus so much these rare conditions like persistent vegetative state or permanent coma or imminently terminal condition that just don't apply to dementia at all.

Alex: So it strikes me that dementia, unlike COPD, heart failure, cancer, is a condition where you lose the ability to make those in the moment decisions as time goes on and your severity of illness worsens. When severity of dementia worsens, you lose the ability to make those decisions. So advanced care planning is an essential part of the condition in a way that you could just keep going back to people with other severe illnesses and asking them for their preferences in the moment.

Barak Gaster: Yeah, absolutely.

Alex: Go ahead, Lynn. Okay, I was gonna ask so talking about dementia in particular, let's talk about the landscape and what you saw in terms of a need for a dementia-specific advanced directive, because I think there may be a few others out there. There's a guy named Stan Terman who has a pocket card game.

Lynn: Playing cards, yeah.

Alex: Playing cards and other directives that are focused on dementia. When you were starting this out did you look out there and survey the landscape and say I still think there is a need for something specific here?

Barak Gaster: Yeah. To me, my main goal from the very beginning was trying to come up with something that was brief and concise and easy enough to have a low barrier to get more people to do it. There's definitely a subset of people who care so much and think so deeply about this that they're willing to fill out the much more complex, probably more iron clad versions that are out there, but I really wanted to come up with something that a large majority of people would be able to fill out easily and quickly just because there are so many people who have really strong ideas about the medical care that they would want if they develop dementia. Especially if they've had personal experience taking care of people with dementia and just overcoming that initial energy activation to get people to fill something out and express those wishes and communicate them to their loved ones was my main goal. Keep it short and easy.

Eric: So what did you actually do? What's in this directive?

Barak Gaster: I also really started out with the concept that you can't really have a directive that says, "If I have dementia, I want this. And if I don't have dementia, I want that." Just because dementia is such a slowly progressive disease that goes through phases where people have really different independence and quality of life such that it would make sense that people's goals of care, their wishes for what they would want for medical care would gradually shift as their dementia got worse. So the directive is structured to have a brief description of what mild dementia is like, and a brief description about what moderate dementia is like, and a brief description about what severe dementia is like. And then under each of those brief descriptions, it gives the same four options for what the goals of care you'd want at that stage of dementia would be.

Lynn: I have a question. I do a lot of clinical work in nursing homes and I think one of the ... when you look back at the discussion over the years about advanced directives, particularly for people with dementia ... is this concept of personhood and the idea that somebody may have certain preferences at a time when they don't have dementia or don't have a severe cognitive impairment. They may have an idea about what their quality of life would be like with advanced dementia and then they get to that point and family and caregivers may have a totally different concept of what that person's quality of life actually is when they've gotten there. Does that make sense?

Barak Gaster: Yeah, absolutely. This is something that I've talked to people about a lot and struggled a lot with. There was definitely a development process to come up with this document that involved input from lots of really smart people who are really experienced in the fields of geriatrics and palliative care and primary care and neurology and psychiatry to try to find the right balance of how you describe these stages of dementia and it's true that trying to anticipate the myriad scenarios that people could be in, in terms of their state of mind in a future state when they have dementia is really impossible.

So that's why this is really designed to be an informative communication tool to help people have structured conversations with their loved ones and then document, to some degree, what they think their wishes would be. These documents are never going to be binding documents that would in any way overrule what a family is guessing their loved one would have wanted. I think the key point is just the opportunity to have a document like this to help to inform those future decisions is invaluable and it's important to frame them as not set in stone.

It's important to frame them as this is an opportunity for you to have this conversation with your family now and that in the future if somebody seems like they are absolutely loving life with moderate dementia, and you're filling out a POLST form, you're not bound to use this directive. But I've just been in so many situations where the family is just so fraught with anxiety and just pain, trying to make these decisions.

Eric: Rebecca Sudore talks about it that there's this concept of leeway, giving family members leeway in making these decisions, so even if somebody says that they want one thing, making sure that family members understand, for many patients, that patients want their family members to have leeway in deciding what they would want, given that we can't predict exactly what the future has in store. And, this is true for every advanced directive, people adapt to new situations as we generally rate our quality of life as lower for our future self if we had a disability than our future self would give our quality of life with that disability.

Barak Gaster: Sure, absolutely.

Eric: I thought it's really interesting. You broke it down into these three different stages. Stage one, stage two, and stage three. Stage three is severe dementia. And then they're basically the same check boxes. To life as long as I could, to receive treatments to prolong my life, but if my heart stops beating, DNR, do not place me on a breathing machine, to receive care in the place where I am living, I would not want to go to the hospital even if I were ill. And the fourth one is to receive comfort care only.

I thought it's interesting that the only one that had the reason why, so under to receive care in the place where I am living. I would not want to go to the hospital even if I were very ill. You put a reason why in there and that reason why isn't located anywhere else and you had a great New York Times piece too about this directive and the one, going back to Rebecca Sudore again, the one thing she mentioned in that New York Times piece is at the bedside, the why is really important. That for family members, not only knowing what the preferences is for their loved one, but why did they say that, is really important. Why is the why only for that one?

Barak Gaster: I don't have the document right in front of me right now, but off the top of my head, I thought that the second option about the DNR-

Eric: You're right, I missed that. The second one has a reason why, too.

Barak Gaster: Right. That was definitely something that came up in the development process of this document, that it needs to have the reason why built into it as much as possible. We don't have reason why for the first one, which is I want everything reasonably medically done to keep me alive longer or that I want comfort care, in that hopefully the reason why for those two are either so complex that it would be hard to boil down or so obvious that we don't need to, but felt it was really important to try to build that reason why into those intermediate goals of care because it is so much about trying to express people's values more than just the check box of interventions.

Alex: Terrific. I want to ask about your choice again of these four categories and I'm thinking now of Angelo Volandes, who has ACP decisions, this videos together with advanced care planning documents. You've probably heard of these, Barak?

Barak Gaster: Yeah. Yeah, they're great.

Alex: His four categories off the top of my head ... I don't have it in front of me either ... include, I think three of them are the same, but there's another one. Instead of the living in the same place where I'm living, he has focus on function and maintaining function as long as possible is my recollection. I'm wondering how you thought about choosing the focus on being in one place versus other possible choices.

Barak Gaster: A lot of it was really working with people who worked a lot with dementia and thinking about the dementia-specific aspects of care in which, in those situations, it is the incredible trauma and delirium and harm that come from visits to emergency rooms. So I wanted to really build that in as a decision point intervention. And also thinking through that issue of antibiotics because that is very often one of the most difficult decisions, as people are approaching having comfort only as their goal of care, the question of what role does antibiotics play in that setting. So really wanted to build in the idea of, well, what if you could give me antibiotics in the place that I'm living. Maybe that would still be something that I would want.

Lynn: I think certainly that choice really rings true for nursing home care especially and it highlights, I think, one of the limitations in our healthcare system, which is that to receive hospice services, dementia has to be so incredibly advanced that there's a lot of people who end up in that in between zone where families choose that they wouldn't want to have their loved one transferred or that they wouldn't have wanted to be transferred, but maybe can you try to do some things that are minimal to moderate burden to try and get them over this hump or keep things as they are. So I think that that does really ring true for the typical trajectory.

Alex: And just to be clear for our listeners who may not have this in front of them, the third choice here says, "To only receive care in the place where I am living, I would not want to go to the hospital even if I were very ill and I would not want to be resuscitated. If a treatment such as antibiotics might keep me alive longer and could be given in the place where I was living, then I would want such care, but if I continued to get worse, I would not want to go to the emergency room or a hospital. Instead, I want to be allowed to die peacefully." That's a really nice phrasing. It encapsulates what you were talking about, Barak, and it came from the lived experience of people and families with dementia.

Barak Gaster: Yeah, and I'll say we worked on that wording really, really hard. I had input from a lot of people and it went through many, many iterations and feel good about the way that it ended up landing.

Eric: All right, so, question. This feels like it's very disease oriented. We're talking dementia and that feels traditional in medicine, like people have a primary disease that they're dealing with, when in truth, even people with dementia, they're dealing with multiple other diseases at the same time. They could have moderate dementia, but they also could have advanced heart failure, COPD. I work at the VA and they probably have COPD, diabetes, heart failure, everything. Is this the right model? Because people have multiple comorbidities and sometimes dementia is the primary terminal illness, but sometimes it's part of what they have.

Barak Gaster: Yeah, yeah. That's a really good, important point and I think that the way that my thinking has evolved and the reason that I do think that a dementia-specific advanced directive is an important step to take is that even people who have many comorbidities, I think a really important way for primary care, geriatric care to move is to be thinking more and more of dementia as an organizing principle for setting somebody's goals of care. And that somebody may have CHF and they may have renal disease and they may have COPD in addition to dementia, but to such a large extent, it is the dementia that is setting a course for what their quality of life is in terms of how interactive they are with their loved ones. Do they recognize their loved ones? Are they able to clean themselves up after they go to the bathroom? Those are really key important values that many people have in terms of how they would value their life. So that, to me, even though they may have other comorbidities in terms of setting a goal of care for their medical treatment that I think it is a useful and important way for us to be moving towards having dementia being the organizing principle in setting those priorities and goals.

Lynn: It sounds like you're using this in your practice and it's out there for people to use and I wonder what the experience has been like so far?

Barak Gaster: Yeah, it's been a totally amazing experience. I thought that when it got published in JAMA that it would get a lot of attention and the interesting experience is just not that many people actually read JAMA, whereas when it got picked up by the New York Times, suddenly it really just exploded. And so within the first week or two after the article was written about in the New York Times, really we were suddenly getting thousands of downloads of the directive per week. That's tapered off some, it's now down to about a hundred downloads of the directive per week, but altogether there've been more than 55,000 people have downloaded the directive and I've just been flooded with emails from people. My email address is on the website where you can download the directive. Just been flooded with emails from people.

Lynn: I was gonna say, I was in Berkeley giving a talk to the Department of Psychiatry, which was a very mixed discipline group and I was talking about palliative care for dementia and somebody raised their hand and said, "Oh, has anybody here heard about the new advanced directive for dementia?" And a bunch of people in the room said, "Oh, yeah!" And this whole group of community providers as well. So it's out there, it's definitely out there.

Barak Gaster: It's really an example of grassroots moving the needle, I think. I think that to some degree, us as primary care doctors or geriatricians, palliative care doctors, we get this and we think it's a good idea and we think about how could we implement it into our practice, but getting it out to the public really touches a nerve. This is a disease that is on people's minds in such an increasing way and they have really clear ideas about what they would want. The beautiful work that [inaudible 00:24:02] has done in Boston really highlights just if you show people either a video or a written narrative about moderately severe dementia, more than 70% of people say that they would want comfort-oriented care only. And that's just not what's happening in practice and it really is touching that nerve that people have out there that I think is really interesting and good for us as healthcare providers to be aware of.

Eric: And I love this because it really does change the thinking to start talking about this very early on when you still have that choice. Now, let's say I want to use this. Is there a website I can download this at?

Barak Gaster: Absolutely. If you go to the form is there to download and click a button, it's free. And I really encourage people to share that URL with people just so that I can keep somewhat of a track of how many people are using it. It's also perfectly fine to download it and make copies and hand those out, too, but the more that people are using that URL to share the info about it the better just because that way I can have somewhat of a sense of how much it's out there.

Eric: Great. And if I wanted to do this in my healthcare system, can I just make copies or do I have to pre-authorize it with you?

Barak Gaster: No, not at all. My goal from the very beginning is to have as low a barrier to getting this out there and having people use it. I copyrighted it only because I wanted to make sure that somebody didn't put a whole mini mental status exam on me and and start charging people for it. My goal is really for this to be free and to be used as much as possible. I have no problems at all with people making copies and handing out to their patients. This is a really important, positive impact that we really could be having on these difficult conversations that we will be having in the next 10 or 15 years.

Alex: Could you talk a little bit about legal acceptance of this document as an advanced directive document across states and how this fits in with the landscape of advanced care planning in terms of prepare for your care, POLST forms, an existing advanced directive somebody might have, would this be a replacement, et cetera?

Barak Gaster: Another really big goal for me as I embarked on this was to really make this as much a usable, accessible living document as possible. Really with the whole concept of de-legalizing advanced directives as a core principle goal, such that it's good to talk about this as not a legally binding advanced directive, as does exist in each one of the 50 states. Each state has its own legislatively sanctioned advanced directive and this is designed to be a supplement to that. In and of itself, as a stand alone, is not legally binding. It's really more in line with the conversation project approach, which is to give people a structured way to have a conversation and to document some of the outcomes of that conversation with their loved ones.

We struggled hard about should we have a place on here to have it witnessed or notarized and really from that de-legalizing the living will concept, there isn't a place, but I would certainly encourage people to do that if they wanted a little bit more assurance that it would stand up to being contested. But really just as a conversation tool is really where it's at, and that thinking of it as a supplement to each individual's state advanced directive is probably the best way to think of it from a legal point of view.

Eric: Yeah, I love that, too. Charlie Sabatino, just a great thinker around advanced directives, a lawyer. He also describes how historically this is considered a legal transactional approach and what we really need to move forward towards is this should actually be more of a communication approach when we're thinking about advanced care planning, even when we're thinking about advanced directives is that the old model of a transactional approach, a legal approach, just doesn't work.

Barak Gaster: Yeah, the whole idea that you need to go to a lawyer to fill a form like this out and that it then gets locked away in your security deposit box with your actual will and nobody really knows what it says, nobody is really even sure whether they have one or not. Your physician certainly doesn't know whether you have one or not. Is absolutely just the wrong way that we should be thinking about advanced directives. An advanced directive like a dementia-specific advanced directive is really just a way to trigger people thinking about what they would want, talking to their loved ones about what they would want, and then writing it down and giving copies to their loved one and giving copies to their doctor who can then put it in their medical record so that 10 years down the road if they are in this difficult dementia situation, that there is something to look back on to help guide what we do.

Lynn: I wonder if you could tell us a little bit about how you're implementing this in your practice. Who are you selecting to have this discussion with, how are you opening the discussion, how are you finding time within your busy practice to incorporate this piece?

Barak Gaster: That's such a great question because it was a really interesting process as I thought about developing a document like this. My initial thought was that wouldn't the most important time to bring a document like this out be at that very earliest moment when you're first diagnosing somebody with dementia and you're sure that you're gonna need a document like this in the future. So my first attempts were bringing it up with people, with my patients who had very early stage memory loss and time and time again they would nod and say, "Thank you, yes, I'll take this home and I'll think about it," but I never would get it back from them.

And I think it's a really complex process of both the fear and the shock of trying to grapple with this new diagnosis and just the cognitive process of imagining a future state of yourself and then imagining different abstract scenarios that that future state of yourself could face is a pretty high executive function process that I think is really, really difficult for people, even at the very mild dementia stage.

So then, instead of offering it to people with very early onset of cognitive impairment, started offering it to people without any signs of cognitive impairment who were turning age 65 or 70 who were in my office as part of an Medicare annual wellness exam and all of the sudden it was just like night and day where people said, "Oh, my god. Thank you so much. This is exactly what's been on my mind. I'm so grateful to have it," and instead of a 0% response rate, I was suddenly getting an 80% response rate. Really changed to thinking of this as not something that is best suited for somebody with mild dementia, but for somebody who is turning age 65 or 70, who is nearing the at-risk age where they could develop cognitive impairment and that's really the situation where it's really taken off as a really important part of my practice and part of it as building the time in as part of the Medicare annual wellness visit, which now has Medicare sanctioned extra billing for advanced care planning.

Lynn: Right, right.

Barak Gaster: But if you spend more than 15 minutes talking about advanced care planning at a Medicare annual wellness visit, the RBUs double if you bill for the advanced care planning piece of that with no cost-sharing for the patient. So that has really become a really practical and effective model for how I'm using it in my practice.

Lynn: So it actually is feasible to add this to standard advanced care planning, from a billing standpoint.

Barak Gaster: It's really, really easy. The documentation is really simple and it's really what I hope could become the future.

Lynn: Great, thanks.

Eric: Well, I really wanna thank you for joining us on this podcast. We're gonna have links to your JAMA article, to your website, to the NPR and New York Times articles about dementia directives. And, again, truly appreciate the time you took with us today.

Lynn: Thank you. Thanks for joining us.

Alex: Thank you so much.

Eric: How about before we end, Alex, do you wanna give us a little bit more of that song?

Alex: [Singing]

Eric: Great. Thanks again and thanks to all our listeners for joining us for this week's GeriPal Podcast.

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Tuesday, June 5, 2018

A Social Worker Led Palliative Care Intervention in Heart Failure: A Podcast with Arden O'Donnell

Can routine initiation of goals of care discussions by a palliative care social worker improve prognostic understanding, elicit advanced care preferences, and influence care plans for high-risk patients discharged after a heart failure hospitalization?   That is the question we attempt to answer with this weeks podcast guest, Arden E. O’Donnell.

Arden is a clinical social worker and researcher who just published her research in JAMA Cardiology,  which found that a social worker led intervention in heart failure clinics improved physician-level documentation of advanced care preferences in the electronic health record compared to usual care (65 versus 33 percent) and improved overall prognostic understanding.

We talked with Arden about her JAMA cardiology study, the impact of a social worker led intervention, and the role the social worker plays in things like illness and prognostic understanding.

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

Alex: This is Alex Smith.

Eric: And Alex, we've got a couple of people in our live studio audience and a very special guest with us today.

Alex: We do.

Eric: Should we start off with the live studio audience?

Alex: Let's start with the live studio audience.

Eric: Would you guys mind introducing yourselves?

Emily: My name is Emily Taplin. I'm a social worker with a palliative care team here at the VA.

Anne Kelly: And I'm Anne Kelly, also a palliative social worker here at the VA.

Eric: And Alex, who is our special guest with us?

Alex: Terrific. This year ... This year? This podcast we have Arden O'Donnell who's a licensed clinical social worker, palliative care social worker at the Brigham and Women's hospital in Boston. Welcome to the GeriPal podcast Arden.

Arden: Thank you so much. Happy to be here.

Eric: I sense a theme. We've got a couple of social workers in this audience. But before we actually talk about why everybody's here and the article that you published Arden, maybe we always start off with a request from our guest as far as a song for Alex to sing. Do you have one for Alex?

Arden: I do. I chose, I'm originally from Texas so I thought I might as well go with the country theme and I chose the song "Live Like You Were Dying" by Tim McGraw. Actually because that it reminds me of one of the patients that was in this study.

Alex: Great.

Alex: I'm just going to do the chorus to start and more at the end. [Singing]

Arden: Wow. That was great.

Eric: Nice.

Alex: That's great. We don't get enough country requests. I love a little country.

Arden: Yeah.

Eric: We're going to be talking about your article that was published in JAMA Cardiology titled "Social Worker Aided Palliative Care Intervention in High Risk Patients with Heart Failure." A link to the article will be published on the GeriPal website for audience members who want to read it. Maybe before we talk about the actual article, what got you interested in palliative care for heart failure, heart failure patients in general?

Arden: Well, I was the social worker on the consult service at Brigham and Women's hospital and was for about just over five years. During that time, we originally had started doing most of the work in oncology. As I was there, my predecessor and coworker, Phil Higgins, who is also a social worker had started making inroads into cardiology. I think we know that cardiology was a little slow to take up palliative care.

We began getting these consults and it turned out that many times both teams sort of weren't sure what they were wanting and there ended up being a lot of requests for social work only consults. My team, my clinical team was sort of saying I don't know what to do over there. What am I going to do? I think they were very focused on helping the symptoms and the truth is in cardiology, a lot of the symptoms are a result of the heart failure. The cardiologists feel confident in being able to really have conversations, I mean be able to help with the symptoms. So, what they really were hoping for was help to sort of begin these conversations around what did the patients want, their goals and wishes. It seemed like a really good fit for social work. As I got closer and closer to that team and spent more time over there, then I really felt like that it was worth thinking about the role of the social worker as a leader on the cardiology team and as a big part of it.

Alex: Just to reiterate, it sounds like the palliative care team was comprised of many different folks. They had physicians, maybe nurses, social workers and the heart failure folks felt like they were doing fine managing the symptoms. They wanted primarily conversations around goals of care and conveying prognostic information. Does that sound right?

Arden: Yes. And in complex situations there certainly were patients that had complex symptoms or complex needs around advanced care planning or thoughts that there certainly were situations that they needed a doctor or a nurse practitioner with those skills but many times the facilitated conversations in understanding those where it was and the clinical work of social work was what they really were leaning on the most.

Eric: That sounds like what you did in this trial is really a social work led palliative care intervention in these heart failure patients. Can you briefly describe kind of what you did in this randomized control trial?

Arden: Sure. What we were trying to do is really trying to think about is there a model that we can use that would be more cost effective? Are there new models that will work in different populations? The reason why we named it swap was sort of like saying could we swap out a social worker for what has been traditionally the randomized control trial setup of a palliative care intervention done very well but in many of the beginning trials, there was a doctor, a nurse, a chaplain, maybe there was a social worker, most of the time there wasn't a dedicated social worker. And, it was this entire team that did the intervention. We were sort of looking at this saying what do we do? How do we embed a social worker? Could we possibly embed a social worker that's trained in palliative care to facilitate some of these conversations.

Basically, what we did was the patients were consented within the hospital. They answered a series of questionnaires and then when they were discharged two weeks later, they had a visit with a palliative care trained social worker who had a goals of care conversation based on the serious illness checklist project, the six questions put out by Susan Block and Atul Gawande which is very incorporated into the Brigham and had these conversations with the patient and either in that visit or the next visit, the social worker wrote up the conversation had, passed it to the cardiology team and then helped make sure that conversation got conveyed, usually through a joint visit with the palliative care social worker, go in with the doctor, the cardiologist and the patient and sort of reiterate the goals of care and so then looked at that and the effect of that. There were some really great results from that.

Eric: Before we get into the results, just to breakdown what actually happened. You had a high risk population of patients who were hospitalized and had to meet certain additional risk, what's the right word?

Anne Kelly: Factors.

Eric: Risk factors, thank you very much. Including prior hospitalization last year, age greater than 80, chronic kidney disease, low blood pressure, low serum sodium, cardiogenic shock or serious non cardiovascular illness like advanced cancer, COPD. They were discharged. Then they followed up with either a palliative care social worker, was that prior to discharge or was that after discharge?

Arden: A social worker, either the inpatient social worker or myself provided the consent but we just gave an overview of the study and there were randomized after that. So they did have contact with someone but the first real conversation that happened in many cases was at discharge in the outpatient clinic.

Emily: Arden, in that follow up meeting on an outpatient basis, what were the six questions that you asked?

Arden: What I did was that we followed the Serious Illness Conversation Guide and it starts out by just asking the patient sort of understanding their preferences so what's your understanding of where you are with your illness now, you know that's sort of the typical question that's asked to patients. The one that I really focused on in that was how much information about what lies ahead would you like to know.

I did this a lot in sort of saying as your healthcare provider, as your social worker, what kind of information do you want? Do you like a lot, do you like a little? That began this conversation and I really framed it as a healthcare provider, we need to know what is important to you and I need to make sure that it's documented in this chart. Not only do I want your doctor to see it but I want you to really know this.

Then the second question is actually around sharing prognosis. I think that in this particular guide, this is what they really feel like is the linchpin of sharing prognosis. And I think that's a problem for social workers because pretty clearly we're not going to share prognosis directly. That's not our job, we're not going to. But what I will say is I was able to begin a conversation about prognosis. I could say something like I know you were just hospitalized. It looks like you've been hospitalized three times this last year. What does that mean to you? Or they'll say or how many times were you hospitalized in the year before? They'll say well just once but now it seems like I'm going more and I'll say gosh, that seems like that maybe you're getting sicker. Do you feel like you're getting sicker?

Although I didn't have to have, I wasn't breaking bad news and as a social worker, I'm not taking away hope, I'm just offering a question around sort of a softball of a prognostic question. Then, I sort of explored key topics around their fears and worries. What are their worries about their future health? What are the fears? What gives you strength when you think about this illness. You're gathering some of the goals and the things that are important to them. Then you can build it on and say if you got sicker, have you ever thought about how much you would be willing to go through or have you talked to your family about what you would want if you got sicker?

Depending on what the patient said, we went from there. But what I would say is in most cases, these patients were saying things like I would want to know everything. I would want to be able to have a conversation with my doctor. I haven't had a conversation with my doctor or I would want my family to know. I sort of feel like that each of those questions, they were sort of falling into, it was really what do you understand, how much information do you want to know, sharing a little bit of the prognosis and then asking what their important goals were, what their fears and worries were, what strengths when they think about the future beginning conversations about are there any limitations that you wouldn't want if you got sicker? How much are you willing to go through and then how much does your family know? Would you like us to have a conversation if you had a conversation with this, would this be important about this, would it be important to have your family there.

Anne Kelly: It's really interesting to think about how to engage in these conversations within a social worker's scope of practice. I'm curious, when you explored patients’ understanding of prognosis in those interviews, what did you discover?

Arden: What I will tell you is that in our initial questionnaire and I think that this is a piece about this study that's important and an interesting piece is in our initial questionnaire packet we did the typical depression, anxiety symptom management. We had five questions that were patient’s preferences and one of those questions was how long do you believe you're likely to live from now. They had to circle what they thought. One was it went from like less than six months, six months to a year, one to three years, five to ten years, ten to twenty years, longer than twenty years. That was one question that we asked. And then we asked them have you ever talked to your physician about how long you were likely to live. Would you want to, yes or no, would you want to. If you have, were you happy and if you haven't, would you want to. Then we changed the surprise question and asked it to the patients. We said if your doctors were concerned that you were likely to die in the next year, would you want them to tell you. And the answer was they could circle yes, no, or I'm not sure.

What I will tell you is, even though I didn't expect this questionnaire to become a little bit of an intervention in and of itself, I think it did because many times as I dug into these questions, I was able to refer back to this. I was able to say the surprise question like around prognosis, what do you understand if your doctor thought he wouldn't be surprised if you died in the next year, would you want your doctor to say that. They said oh yeah, you asked that on the questionnaire.

I wasn't asking it out of the blue. I want to be honest about that. It had been on this questionnaire but that's where we really got into that conversation around prognosis because many times they would say yes I would want them to talk and of course they would, they're my doctor. Of course, they would tell me that. What I thought is as a social worker, that is probably not true. You actually probably have to ask that directly if you want that answer. Doctors don't like prognosticating so we understand that but that was a really interesting one. That really got to the key of some of the prognostic questions.

Alex: That's terrific.

Eric: To the point of doctors don't like prognosticating, was it half of patients the cardiologist didn't have a discussion about prognosis with their patients despite 40% were dead at six months?

Arden: Yeah. That was the piece that I think is the most interesting. I will tell you, on that first questionnaire when we asked them how long they thought they had to live, 82% thought they had a lifespan greater than five years and 40% of them, we had a 40% death rate and that was within three months. The death rate within a year was about 65%.

Alex: Wow.

Arden: That's just a huge, huge discrepancy of where they thought they were versus what they were and in 67% of the patient population, the doctors checked off I would not be surprised if this patient died in the next year. We asked the doctors the surprise question also. They were hitting at they thought 67% of this they wouldn't have been surprised and that's about how many we lost in a year.

Emily: I just have a clarifying question about the process. Was the questionnaire something that you filled out together with the patient in this visit or were they filling it out beforehand and they sort of had their answers as a guide as you entered the interview. How did that work?

Arden: They filled it out beforehand. Many times I didn't necessarily look at their answers, it was just the fact that it was asked so when I said it, they responded like it was on that questionnaire. I didn't have their questionnaire in front of me but I was able to say I know you filled out the questionnaire because everyone filled out the questionnaire. And some people wrote I don't know, I don't care. I let them revisit what they thought but I didn't have the questionnaire with me. I did have the additional leverage that I knew that question had already been asked.

Alex: Ok so Arden, you talked about the intervention, it looks like you randomized 50 people, split approximately evenly between the usual care and the intervention and then you looked at outcomes at six months. Tell us what you found?

Arden: What we found was that at six months, 65% of the patients had any documentation that was documentation of their goals of care in the medical chart. It was 65% in the intervention group and 33% in the control group. What I will say is that for each patient that the social worker saw in the intervention group, there was a full documentation of their goals of care but we didn't count that. So 100% of the patients who the social workers spoke to had something in the chart. But we were really looking at non study staff. Did the conversation I had that was either emailed to them or placed in the chart subsequently influence another conversation that was documented by a clinical like the cardiologist or the nurse practitioner. In 65% of the cases, that was the case. Maybe this changes the conversation and in 33% of the control group.

Alex: Hold on. Let me just clarify that part. As part of the intervention, you documented the advanced care planning and then emailed that to the clinical team, the heart failure clinical team taking care of the patient. Is that correct?

Arden: Yeah.

Alex: Got it. The intervention sounds like almost has three components so far. There's a questionnaire which almost serves as a prompt list. There's the visits, an average of the two by the palliative care social worker, and then there's an emailing of information about that visit to the heart failure team.

Arden: It was the summary, I would have, the social worker would have documented the answers to the serious illness checklist in the chart and then I would also email that to the team to ensure that they read it.

Alex: Got it. Great. Okay. Go ahead. You were going to talk about the other outcomes.

Arden: Then, 58% when we looked at MOLSTs comfort care forms or discharge to hospice there was a difference, 58% of the patients actually had that that were in the intervention group in comparison to 20% that were in the control group. I think that the most significant one especially when I think about social workers in general was this improved prognostic alignment. What we found was when we looked at the questions that we asked at the beginning of how long do you think you had to live and those patients circled one of those categories, we asked that again at the end of the study. What we found was that 94% of the patients within the intervention group moved at least one category toward what was a more realistic prediction of their prognosis as opposed to 26% in the control group.

Alex: That is fascinating. That is absolutely fascinating particularly since you just told us that as a social worker, you didn't feel like it was your role to disclose a prognostic estimate. You sort of asked questions around it but didn't directly offer prognostic information to these patients. Is that right?

Arden: Exactly.

Alex: So what happened here? How did their prognostic understanding come to greater alignment with clinical understanding?

Arden: I think that's the piece and we always think about, and maybe the social workers that are there in the studio can also speak to this, but I always have this question, as a palliative care social worker, what is our value added? Every team loves us. Everyone can say they love us but we don't really have this idea of what do we do. I really feel like social workers help patients deepen their understanding of their illness and their prognosis. And there are lots of ways that we do that.

We can witness conversations, we can repeat back to patients what doctors have said versus what patients hear, we can ask questions about it. But what I feel like is that they were able to have a conversation with me. I was able to ask some curiosity questions, delve into it, and then when I saw a place where there was a massive disconnect such as I think I have ten years to live and my doctor thinks I have less than one, I say to the doctor they think they have ten years to live and you're telling me you're not surprised if they die in the next year. I was able to say, can we have a conversation about this.

I was able to prepare the patient for the joint meeting with the doctor and then I was able to summarize and say, hi, Dr. Desai, Mr. Jones here really wants to understand his prognosis. He has been saying he really wants to get all the information possible. He feels like that he may have another ten years to live but really would want to know if you didn't think that was the case. Then the cardiologist can say, actually, you've been doing well in the last whatever, how ever months, but, you've been getting sicker so what are the things that are important? I can say, well it sounds like he really wants to go see his family if he only had a short time left. Then the doctor can say well, I think that would be a really great thing to do this summer.

Then there's, I think that even if the doctors weren't saying I think you have days to weeks or weeks to months, this prognostic conversation sort of was really rooted in their goals and values and what was important to them so they were able to really understand I have a shorter time than I thought I did. For me, I feel like as a social worker then they can plan, then they can do the things they want to do. Then they can make those decisions, then their family can be prepared.

Emily: I'm really curious when you shared this information with the other providers on the team, your non-social work colleagues, what was the feedback you got from them around their perceptions of the conversations you were having with patients and their role in being able to follow up on those conversations?

Arden: I got such positive feedback and lots and lots of thank you so much. Not from everyone ok, not from every single person but thank you so much for having this conversation. I didn't know this. This will help me be able to have a better conversation or Arden, do you think you can come in with me for this conversation. I don't know if I can just refer to your conversation. I'd rather you basically wind up the conversation and just ask me a question and I can do it. As they started to trust me, they realized I wasn't pushing any agenda. I just thought it was really important. I'm a huge advocate and I feel like it's really important for us to understand what our patients want and try to achieve that as much as we can, medically.

Eric: I think it's fascinating this intervention sounds like it's very much focused on the invitation to have these discussions about prognosis, what it all means. I think it serves as a nice contrast because there was another randomized control trial for palliative care in the ICU for chronically critically ill patients. To that, there was very little invitation to discuss prognosis and what everything means. It was a really negative study with actually potentially increased PTSD in the patients or actually the surrogates that were studied. I wonder in this study, were there any side effects or negative effects of having these really hard discussions?

Arden: That's a good question. I will say that I did not see negative side effects. I'll mention one in a minute but what I will say is that I actually didn't see negative side effects. One thing is after the conversation, I had an evaluation that was like how hard was this conversation, one to ten on a Likert scale. What I will tell you is that when I handed those to patients, most of those patients said what conversation? I said, well the one we just had. They said that's your job, that’s not an intervention. It was like the conversation I had, they wouldn't even judge. They refused to say it was an intervention because they felt so much that this conversation we had was about finding out what they wanted and putting it in their medical records and that was our job as clinicians to do.

Eric: As a side note too, I just learned from our last week's podcast, that when we say intervention, we think of medical tests and things like that.

Arden: Exactly.

Eric: When we talk to patients about what they think, they think it's like a intervention around substance abuse. You see those TV shows like intervention. It's just like the wording that we use too often…

Arden: Exactly. The six questions I ask, that because I had done it so much seemed like a conversation and flowed through, didn't seem like anything other than a normal social work assessment to them, which is great and gives us a lot of hope to do it but it really felt like, it felt like it was positive and people always said positive things.

The one situation that I will say that I found that as a social worker I worried about was there were several situations where we had a patient who thought they were going to live greater than five years and we had the conversation. They said no I want to know, I definitely would want my doctor to tell me. And so I would say okay, we can we meet together and I'll help, I can make sure this conversation happens or we can do this. Do you want to bring your wife or family in and they'd say absolutely not. I wouldn't. I don't. I'm going to do with my doc alone because I didn't, I may have given them some warning shots that they were sicker. I didn't say this is going to be a conversation where they're going to tell you something about your prognosis because again, there is a piece around that. Then at the next visit, if the patient was sitting there, and the patient said I think I have more than five years to live and the doctor said actually you've been getting sicker I'm concerned it may be less than that, it may be one to two years, I think you need to do that. That patient was holding information that they now think they have one to two years and their family thinks they have five years. Then the patient was in the situation where they were going to have to go back and tell their family. That was the one situation that I thought there could be a negative effect because we didn't insist on the family member going there. I think that this would be a different situation if our patients weren't as sick as they were.

Alex: Yet you also found no difference in depression, anxiety, spirituality or quality of life scores. There was no improvement but there was no drop either.

Arden: Yeah. We checked very carefully for that. We didn't. It was just one of those anecdotal things that I thought if there was something here about this, that may be one thing that we should consider.

Alex: Right. This intervention is going to take time to refine, scale up, test in other settings, and yet I think it's really interesting we can draw some implications from this already, potentially, in terms of this is a novel palliative care intervention. It's not just a social worker led intervention, it's basically a social worker intervention with some other components. You've got the prompt, you had the email to the docs that put some information in the clinical record. It sounds like you were actually involved in some of these conversations about prognosis and follow up goals of care at subsequent meetings.

Eric: Did you ever get the rest of the palliative care team involved in any of the intervention patients?

Arden: Yes. I was going to actually say that. That was actually a very important piece that I don't want to lose here. But what I will say is that I did have obviously a cardiologist and also a palliative care doctor, Kristen Schaffer who I would meet with once a month. And, was always available to me if something came up that I felt like was complicated or over my head or that we needed some real palliative care support or if the cardiologist said I think this patient really needs a full palliative care consult, usually because of symptoms. And of the 25, 26 patients that were in the intervention group, I ran by many of the cases with Dr. Schaffer but I got her to be involved in three separate cases. One was a situation where the patient had dementia, early stage dementia and there were some concerns around capacity and I really wasn't sure about even the documentation of these conversations and the decision making of this patient. So that felt complicated.

There was another situation where the patient had really, really specific desires around their MOLST, like I want to be resuscitated but not intubated, I want to have this but not that. And both I and the nurse practitioner who was working with this patient didn't feel comfortable filling out the MOLST in such a way that the patient wanted it, so the palliative care team got involved in that situation. Another one was around some acute symptom management that came up during our conversation that the team felt like the palliative care team could be involved.

I had the support of that team and that's an essential piece of it. I certainly don't think the social workers can do this alone but I do think that especially in early palliative care, these conversations are iterative and if the social worker can be embedded in the clinic and can start having these conversations that seem normal and just start gathering information along the way, that it makes a lot of these conversations much easier later and saves time for the nurse practitioners and the doctors in the end for sure and maybe money, we don't know about that, but maybe money.

Eric: Let me ask you this. Let's say I'm working in a medical center that does palliative care consult, both outpatient and inpatient, but were not yet embedded and integrated in a heart failure clinic. Can you give me three things that we can do to get involved in the heart failure clinic and potentially do something like what you just did in this trial?

Arden: I think the question is and every hospital is set up differently around social work and what the social work role is. I will say that I played a really clinical role here. I was really doing a lot of these or me and the other social worker that was involved we were really doing these. But many times these heart failure clinics want a social worker. If you could have a palliative care trained social worker who had those skill sets and were willing to be able to have this conversation and also, do the other social work responsibilities that that clinic has defined as social work and what they want to do, maybe some care coordination, maybe some resource things. I think that's the place.

I mean social workers are less expensive to be honest than embedding a nurse practitioner that does palliative care. But you can also do other things. I think this idea of embedding a palliative care clinician, whether it's a social worker or NP or social worker with support into it seems like it's cost effective. I just think the next steps are sort of saying what are we, I think money speaks. I think you have to do some more stuff on that piece.

Alex: This is terrific. I want to turn it to Anne and Emily here for a second. There was a lot of head nodding when you were talking about the role of palliative care social workers. I'd like to give them the chance to say their perspective on the role of palliative care social workers and whether they could see themselves in this kind of role leading an intervention for patients with heart failure.

Anne Kelly: I really appreciate a lot of Arden's insights and comments around the leadership role that social workers can play within a palliative care team and in helping patients who are facing serious illness. I think what she's also describing is having a shared understanding across disciplines and across the medical center culture and really recognizing and empowering social workers to play this role and really gain those leadership responsibilities in that way.

Eric: Emily?

Emily: Yeah. I appreciate how much invitation and consent was involved in this process which it seems like led to a lot of trust between the social worker doing the intervention and the patient and really opened up the conversation in a way in which it could be truly patient centered. And just the fact that you got such positive feedback from the heart failure team, I wish we could spread that message across the land, getting that kind of feedback from the clinical team.

Arden: That was I feel like for me it was also, it was humbling and I was really appreciated. You walk in, you're not sure, you're doing this intervention. Nobody wants to talk about death, we all get this. Being a palliative care social worker as well as probably a palliative care doc, you're not someone people usually want to see walking toward their patient.

I just feel like that after the first couple sessions and after going in, they were requesting, they were asking. And I got a lot of statements like thank goodness you were there, that was such an easier conversation because you were there. I think some of it has to do with what you said, interdisciplinary teamwork. I think all of us know that we're better together in the vast majority of cases. If one person can't say something, then the other one, but if I had spoken to the patient before and the patient trusted me, then I was able to ask questions and help navigate this and if the doc didn't know where to go, I was also able to make some of those bridges. I really felt very very appreciated by the team and I would have loved to stay.

Eric: Are you still doing it?

Arden: I currently am getting my PhD so I can continue this work and so the work that I'm doing right now is in the emergency department. I didn't stay in the heart failure clinic just because I had to go to school.

Eric: Is there a palliative care social worker in the heart failure clinic?

Arden: They are just now hiring a palliative care social worker. I think because of this study, the Brigham has funded us to embed a palliative care social worker in the heart failure clinic as well as in I think it's renal.

Eric: Nice.

Alex: Great. Terrific. So do you work with Kei Ouchi in the ED?

Arden: I know him but I don't work with him directly. I heard his thing. I just do some of the social work. I just sort of work there, I'm sort of on call. I don't get to really, I don't have a 40-hour job there because I'm going to school. It's more part-time. I don't get to work with him yet, but someday.

Alex: I hope you continue with this work. This is terrific. Like you said, I hope somebody takes this up if not you and takes the next step.

Arden: I hope so too. I think what you said was true. This was a very small study because 40% of our patients died the final sample was clearly small. It's hard to get a lot of power from that kind of a study. I don't think we would have, when we set this criteria that you laid out at the beginning, we were hoping to have patients who had a prognosis of one to two years, we never would have set an intervention for a six month intervention that we thought 40% of the people would have died. We just didn't anticipate that at all. I don't know if these criteria could have been opened up a little bit more or because no one had done this, we got the sickest patients, I’m not exactly sure why that happened. But I do think it's worth getting social workers trained, embedding them, seeing if these kinds of results are replicable. I think they should be though.

Eric: I think so too. Definitely hope so and I just want to say thank you very much for joining us for this podcast.

Alex: Thank you so much Arden.

Eric: It was great having you on but maybe before we end, Alex can give us a little bit more of that song.

Alex: Thank you also to our in studio guests. I love the social work theme for this week. [Singing]

Eric: That was a great palliative care song right there. Again, thank you Arden and thank you for all our listeners for joining us this week. We look forward to talking to you next week. Goodbye.

Alex: Bye everyone.

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