Last month we published a podcast with Sean Morrison that garnered a great deal of attention, in which Sean Morrison argued that Advance Care Planning is an idea that is “clear, simple, and wrong.”
This week, we have a fresh updated counterpoint from Rebecca Sudore and Ryan McMahan. These two published a paper this week in the Journal of the American Geriatrics Society, or JAGS, that argues that the field of advance care planning has come a long way. Early studies of advance care planning evaluated it with advance directives, and studies of advance directives showed little to no difference. However, In their review they find recent (since 2010) high quality trials demonstrate the potential of advance care planning by using modern conceptions of advance care planning as a longitudinal conversation to help surrogates prepare for in the moment decision making. These studies evaluated a broader (and more fitting) range of outcomes than prior work, including surrogate preparedness.
My take away is that if we’re looking for advance care planning to result in “goal concordant care” – we’re asking too much of it. That doesn’t mean it’s not useful. It’s primary use is helping surrogates feel like they are prepared and satisfied with the difficult choices they have to make for seriously patients. Doesn’t that matter too, and, some would argue, just as much? The surrogates live with these decisions the rest of their lives.
So the issue is nuanced. One of my favorite parts of the podcast is when Rebecca Sudore returns to Sean Morrison’s Ford Pinto analogy and really uncover the real world complexities of how it should be applied to advance care planning. That Ford Pinto analogy just keeps on giving!
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Eric: Welcome to the GeriPal podcast, this is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, who do we have on with us this week?
Alex: We are delighted to welcome back for a third time on the GeriPal Podcast, Rebecca Sudore, who is a geriatrician and palliative medicine physician, and Professor of Medicine at UCF. Welcome back, Rebecca.
Rebecca: Nice to be here, thank you.
Alex: And we’re excited to have Ryan McMahan. This is his first time on the podcast. He’s a long time research collaborator with Rebecca and a resident in internal medicine at UCF. Welcome to the GeriPal podcast.
Ryan: Hey, thanks. Great to be here.
Alex: Ryan was on Nights last night. He got about three hours of sleep and we’re so grateful that he’s joining us. Thank you so much, Ryan.
Ryan: Of course.
Eric: So on today’s podcast, we are going to be talking about advance care planning and for those folks who’ve been listening to our podcast. You probably know in August we just did one too. I think Alex titled it, Advance Care Planning is Wrong.
Alex: Sounds right.
Eric: We’re going to be talking about a recent study published in the journal, American Geriatric Society, JAGS on advance care planning that Rebecca and Ryan did. But before we get into the topic, do you have a song request for Alex?
Ryan: It’s been a long summer, so I’m going to take it back to early 2000s with a Bay Area Band Green Day, Wake me up when September ends.
Alex: It sure has been a long summer and we’re recording this in September, this may come out in October, but, oh boy, can’t wait for September to end. And I hope the rest of the year goes well too.
Eric: Yeah. Like it’s been going real well so far. [laughter]
Eric: I thought you were going to substitute “when 2020 ends” on that Alex. [laughter]
Alex: Yeah. That’s when we need the big drums to come in the full Green Day Band… The good local band, right? Berkeley. Berkeley band. And they have great influences. They have this Beatles chord progression, their C to C minor. Very Beatles, wonderful song.
Eric: I was going to say that. Not really, I have no idea what a C or a C minor is. Well, let’s dive into this topic. Again, we’ve done several podcasts on advance care planning, video advance care planning. We just had Sean Morrison talking about advance care planning from his viewpoint. Before we get into the topic, Ryan though, how did you get interested in advance care planning and thinking about this as a research focus of yours?
Ryan: This has been a long process working with Dr. Sudore. It’s been almost 10 years working together. So I think by now, if I’m not interested in advance care planning, then she’d probably find a way to kill me because, it’d be shocking. But I really go back to one of our first research projects was the focus group, where we just sat down with people with serious illness and talked to them about their thoughts on death and dying and what harms them, and really hearing their personal stories when people who’ve kind of been through it, and talked about how… In terms of what they needed and wanting more preparation essentially.
Ryan: And that it wasn’t just about filling out a form for them. But it was more about conversations and being prepared to make these kinds of decisions. So that kind of shifted my thought process on what advance care planning sort of was. And over the years, as it’s been researched to seeing the sort of mixed results from different studies, lots of systematic reviews coming out to again mixed results really made me want to just take another look at it, just to see why hasn’t the research born out the benefits that seems so obvious.
Alex: And I’m interested in your clinical experience, you’re a resident, right? So you are in it. Right? Clinically, day in, day out, night in night out, last night. Have you had experiences during residency that resonate for you as far as anecdotal evidence that advance care planning is important?
Ryan: Yeah. It’s almost innumerable experiences, especially now during COVID. I think back to my last ICU stint working with a family whose mother had already had sort of a life limiting illness, had already gone through some advance care planning with her family, filled out a POLST and it was DNR/DNI and certain on her wishes. And then ended up getting COVID-19 from her long-term care facility and came to our emergency department. And it was through conversations with the family where they’re like back in June, we actually asked her point blank. “What would happen if you were to get COVID?”
Ryan: And they felt kind of empowered to seek that information out based off of their previous experiences, going through POLST documentation and other advance care planning with her other illness. And so, they made the decision to go with what she had wanted, which was to say, if she gets COVID, she’d want to give it a shot. And she’d be okay with intubation if she needed it and given this uncertainty of this illness and the novelty of it, see how it goes.
Ryan: And over the next couple of days, when it became more clear that maybe she would need a dialysis line and her other organs were shutting down and being able to talk with the family, and have them say to us, “I think we’re kind of beyond where she thought she would be at this point, and wanted to transition her more to comfort measures.” And they were able to do that essentially because they had this preparation. And there’s a lot of feelings I have about that case in particular.
Ryan: But, one thing that sticks in my mind is, if this patient were ever in a retrospective advance care planning study and they saw, “Okay, here’s this POLST, it’s in our computer system, she’s DNR/DNI, and then ended up coming into our ICU intubated and ultimately died in the ICU.” That would almost look like an advance care planning failure, right? That would look like maybe the pulse didn’t work.
Ryan: But there’s so much nuance there and so much kind of in the moment decision-making that was happening that advance care planning really was the number one tool that allowed this family to kind of apply their wishes of their loved one. And ultimately have probably the outcome the patient would have wanted for themselves.
Eric: So, I think one of the challenges, and when I think back to Sean Morrison’s podcast, I think one of the challenges is, I think we all have stories we can tell about when advance care planning works. And I think you bring up a good story. What does work actually look like? Is around healthcare utilization because sometimes people want a lot of healthcare utilization.
Eric: But I think what it feels like you’re going with this JAGS paper is looking at a bigger picture, starting to address some of those questions about, what does working mean and are we seeing benefits around advance care planning? Because if this was a drug, anecdotal evidence is not going to be enough for us to continue to support and pay for a very expensive drug, is it the same for like advance care planning? Anecdotal evidence is fine, but it’s just not enough to continue to support programs that push for advance care planning.
Ryan: Yeah. It’s a fair point. I think something I just keep coming back to again, is just listening to people who’ve been through it. And it has so much in terms of face validity for something that seems to be helping people. They’re telling us they want it, they’re telling us they want their doctors to bring it up with them. Clinicians say it’s important. And so, it is just a huge question mark, as to why we haven’t been able to really capture that supposed benefit through these different studies.
Ryan: And is this a core problem with advance care planning as a concept or is it a core problem with our research and how we’re approaching our research questions, our outcome measurement ascertainment. And so that’s what really made us want to take a broader look at this topic, and kind of dive into these recent trials and see what’s been working and what hasn’t been working.
Rebecca: If I can interject too. I think one of the key things, I think that Ryan and I’ve talked about many times that really struck us and you were talking about your focus group study, which I think was the first study that you were the first author on.
Ryan: Very true.
Rebecca: Many studies after that. But I think the key thing about that and the key thing about other studies that we’ve looked at is that we’re not just asking… We didn’t ask those people off the street. And a lot of the studies didn’t just ask people off the street. They asked patients and surrogate decision makers who had reported that they had made decisions for somebody, themselves, or somebody else for serious illness.
Rebecca: When they thought about that situation, did they think advance care planning was helpful or would have been helpful? And those are the very people that say they want their doctor to speak up about it, that they feel that it’s incredibly important, that they want to do it because they want to decrease burden on their family members and friends, if that’s one of their biggest motivations.
Rebecca: So, I think when we think about advance care planning, and again, when Ryan and I talked about this, that is so powerful and really makes us take pause really. And we’ve said this in our paper, really, the onus is on us to figure out how to do this since we’re hearing from the people who are actually living through these experiences that they need it and sort of want it.
Eric: So can you tell me a little bit about kind of… What did you actually do in this study?
Ryan: Well, we decided to do sort of a scoping review and that allows us to kind of take a step back and look at all the data that’s there. It’s a little bit different than a systematic review, which most people would be probably more familiar with. Those are usually more highly focused, you’re comparing apples to apples, you’re trying to synthesize and aggregate these findings. But the scoping review kind of lets you take a broader take essentially.
Ryan: And so, we were able to work with our librarians and come up with a search strategy. And what we wanted to do was just look at the last 10 years of high quality RCTs. And we chose that time period because advance care planning has been kind of evolving over time. I think it’s been a long-time since the 1990s with the Patient Self-Determination Act and advance care planning has evolved since then.
Ryan: So, really looking at just this last decade of research and trying to come up with, what are these definitions of advance care planning that people are using because that’s changed? And what are the intervention types of people are using to address advance care planning? And what are the outcomes that people are using to define successful advance care planning. And so that’s what we wanted to use the scoping review is just to sort of take a broader look at all these trials and try to see if we can find any common threads. I think we started with something like 1,400 or so total articles.
Ryan: But boiled it down to 69, high quality studies just in the last 10 years, and just started to kind of go through it line by line and try to see what we can pull out and synthesize from there.
Alex: Before we get to what you found here. I want to just back up again to the reason to do this study. And Sean Morrison in his article, Advance Directives/Care Planning, Clear, Simple and Wrong. He said, “A review of 80 systematic reviews, 80 systematic reviews with over 1600 studies produced limited and low quality evidence that advance directives or advance care planning can actually result in changes in patient family clinical utilization or financial outcomes.” And so, I guess my question for you is, why another review now? What makes yours necessary at this time point?
Ryan: Yeah, we really needed 81. I think that was the key. [laughter]
Alex: That’s what it is-right [laughter]
Ryan: We needed just one more.
Eric: You can never end on an even number. It’s got to be odd. There’s that tie breaker.
Ryan: Well, I think that work by Jimenez was such a massive undertaking and huge props to that research team for going through that. I did a small piece of that with our scoping review, but their work was impressive. But I think one issue, it’s brought up in their paper as well as a lot of these studies are observational, cross-sectional studies from across this continuum of advance care planning from when it first started to now.
Ryan: And just seeing the heterogeneity between these studies, we’re really not comparing apples to apples. These studies can be very, very different in terms of what they called advance care planning as a definition, was this just documentation studies, is this about preparation are these this sort of multi-modal many different approaches to an intervention, whether it’s video or in-person visits facilitated discussions? Comparing all those studies together led to mixed results and that’s sort of not surprising to me.
Ryan: And so, that’s why we wanted to kind of fill in this gap of just saying, “Okay, let’s try to compare more apples to apples here.” And let’s just look at high quality evidence, gold standard RCTs that ended up having high quality… the studies that we included, it was above 95% or so had high quality. So yeah, that was sort of where we wanted to add our commentary.
Rebecca: Yeah. And I think all the trials that we found as well, none of them had been included in any prior systematic review and were not included in the Jimenez paper. So I think that’s another addition for whatever reason they hadn’t made it into prior systematic reviews. And to Ryan’s point too, not only were the studies that were included in the 80 systematic reviews, many of them were of poor quality, but the systematic reviews themselves were poor quality. So, taking that into perspective, it’s Ryan saying like, “We felt like we really wanted to just hone in last 10 years, highest quality RCT data. What did we find?”
Alex: Can I use some words that you probably don’t want to use, but just sort of to boil it down for our listeners, who are primarily clinicians not researchers. That if you take like garbage and then you systematically review the garbage with poor quality systematic review, you will find garbage. But your argument is that-
Rebecca: I’ve probably published some of that own garbage-
Alex: Yeah, I did too. I was in those older fuse I believe that study we did with Carl Bishop. But now you’re honing in on just the randomized control trials, just the more recent evidence and you’re finding that these trials are higher quality and that they use a modern definition of advance care planning that reflects all of the evolution that’s taken place since the very early studies like support, which was negative. But that’s pretty old data at this point.
Ryan: Yeah, exactly right. I mean, seeing how many of these newer trials are looking at advance care planning as a process was pretty heartening. It wasn’t all of them, but it was around 40% or so, a little higher than that. So, at least I think that was a step in the right direction.
Eric: Okay. I got to know, what did you find?
Rebecca: Well, I can speak to that and Ryan, please sort of jump in. I think you were just alluding to the fact that when we looked at like the definitions. So I think if we take a step back, like how do people live in define advance care planning? So about 40% defined it as the newer… People may not know on this call, that there’s like a newer definition of advance care planning. So, traditionally it was just an advance directive or it was code status.
Rebecca: And a large Delphi panel was put together. I think you were both on the Delphi panel, if I recall. To try to bring together over 50 experts in advance care planning internationally, really to come up with a definition, sort of defined and agreed upon. And that definition talks about how advance care planning is a process that helps people sort of understand and share their personal values and goals. And there’s really nothing about it that just says it’s just a former code status.
Rebecca: So when we think about advance care planning as this process of communication, we really hoped that the field was moving more towards that direction. And again we did find that. When we look back before 2010, most of the definitions were about forms, advance directive, POLST, code status, and afterwards we’re kind of moving more in that direction. So about 40%.
Rebecca: But I will say before you even start talking a little bit about the findings, is that when we think about advance care planning, this is I think has been one of the problems is if we think about advance care planning is a big bubble, people put a lot of things in that bubble. They put advance directive forms, they put POLST forms, they put goals of care conversations about very end of life treatment.
Rebecca: They put in shared decision making for serious illness, my personal favorite preparation for in the moment decision making, which is what our prepared programs focused on. And so, I think when we think about these studies and we say, “Oh, it worked or didn’t work.” What is it? What are we talking about? I think one of the things that Ryan really helped me with in the paper, we have a figure in the paper that talks about all the pillars of advance care planning.
Rebecca: And in these pillars, there are multiple things. It’s not one person or one thing. You could have interventions that focus on patients. You could have interventions that focus on clinicians. You can focus on the community, you can focus on clinicians, you can focus on the healthcare system and you can focus on policy.
Rebecca: And when you think about how complicated that is and how the end result of advance care planning is like interweaving mismatch between all of those different players, and then when we think about the prior data has usually been, including my studies, focusing on one of these pillars to see what the outcomes are. And Ryan and I initially… We talked about this Ryan, the initial title of our paper was, are we asking too much of advance care planning?
Rebecca: Where we have this thing that we’ve created, which we don’t even know how we’re going to define it. And people define it all different ways and it’s really sort of a tool that could be used in multiple other things. And that we expect this tool to fix all of the ills and problems of end of life care. And then when it doesn’t we say, “Well, I guess it didn’t work.”
Rebecca: So I think Ryan and I were trying to tease out in this study and we’ll talk a little bit more, about what basically is advance care planning and how people are defining it, which we just talked about. But also when we think about the outcomes, are there some outcomes that are actually maybe most appropriate or more appropriate when we start thinking about how people have used them?
Rebecca: So, I’ll stop there. Do you have any questions before I get into the nitty gritty of what we found? Any reactions to that? Ryan, anything else you want to add?
Ryan: No, I think that was great. As you mentioned the six pillars and how each study can be looked at as which one are they trying to target? I think that was a real interesting thing to look at for each of these studies. And then when it comes down to these primary outcomes, as you said, how are we defining it? And then what does success mean for their trials. And when clinicians are thinking about outcomes, we want something that’s concrete that we can easily measure at the end of a study.
Ryan: And usually that’s “Okay. Was there an advance directive in the chart at the end of your, however long follow up-period that you had for your study?” But when we’re talking with patients and families, I can tell you, I don’t think I ever heard anybody say that all they want is that, Epic has a nice clickable, downloadable version of their advance directive form. It’s about, I want to make sure… My wishes at the end of life are in line with what my goals are and here’s what my goals are, or it’s “I want to have less burden for my family during this whole process.”
Eric: Well, I’m going to go back to the question about results. Does it do either of those? Does it help with goal-concordant care or reduce burden to family members? What do we know about the outcomes?
Rebecca: Yeah, I think the thing that we were actually pleasantly surprised about, I know that… We initially looked at the different types of interventions, because they span multiple things. So is it written only? Education materials that we hand out? Is it video only? Is it multimedia? Is it clinician training? Is it a facilitator model? And I think the heartening news to us is that if you look at all of these different intervention types and you look at the primary outcomes of the trials, the majority were positive.
Rebecca: So these were all positive trials. So I think, again when we say advance care planning doesn’t work, the majority of these trials were positive. But then I think what Ryan and I wanted to do is go back and say, “Okay, what’s the primary and secondary outcomes that they looked at?” And if we just look at the outcome and the outcome types, can we teeth out which of these seemed to be positive more often, and which of these things, maybe isn’t looking like advance care planning may or may not really affect for multiple reasons, which we can sort of discuss.
Rebecca: So that sort of same Delphi panel that helped define advance care planning also went back. And for listeners who their brain isn’t in advance care planning research really went to try to create these categories of buckets of advance care planning outcomes, that made the most sense. And so, I’ll just say we went back and we looked “Okay, if we look at these categories of advance care planning outcomes, are they positive? Are they negative? What’s going on?” So the first set of types of outcomes that we looked at are process and what we call action outcomes.
Rebecca: So process outcomes are those things where patients will say, “I feel ready to make these decisions. I feel ready to have these conversations. I feel confident. I have self-efficacy that I can do it and I’m moving along the behavior change pathway, and I can engage in this stuff.” Action outcomes are those things that patients say, “Yes, I had a conversation. I documented my wishes, my family and I have made these decisions.” And those were overwhelmingly positive, 70 to 80, over 80% of those outcomes were positive.
Rebecca: So I think what this tells us is that these interventions are helping people sort of engage in the process. So that’s great. There’s another kind of outcome type, which we in the Delphi panel called quality of chair. And what gets in that quality of care bucket is goal-concordant care, we can talk about that separately. I could talk about that all day. And I would say that most people say, “Well, that’s really the gold standard of advance care planning, goal-concordant care. People get the care that’s consistent with their vote.
Rebecca: But you can see from Ryan’s great example at the top of this podcast, all the problems and actually measuring that. Like, it sounds great, but unless you were a fly on the wall, during the time that somebody had an event or got care at the very end of life, it’s really, really, really hard to measure. So that’s in this quality of care bucket as is things like congruence or agreement between what the patient says they want and what the surrogate will say that they want for them, and satisfaction with things like communication and decision-making.
Rebecca: So, I think what’s interesting about this quality of care bucket is that very few, like 10% of the study is looking at goal-concordant care were positive. So, that’s it. Just 10%. But when we looked at agreement between patients and surrogates and patients and clinicians, something I will say in the prior literature had kind of shown mixed results, 88%, really high number of those congruence things were positive. Which actually felt good to us because it seemed like people were probably having more conversations, focusing more on this process and really kind of more understanding each other.
Rebecca: In terms of satisfaction with communication, all of those outcomes were positive. Patient satisfaction with communications, surrogates satisfaction with communication. And they actually in one study asked clinicians if they felt satisfied with the conversation with somebody who had done advance care planning and the clinician satisfaction was high. So that is great too. When we look at satisfaction with decision-making and satisfaction with medical care, that was very interesting because it was much lower for patients for both of those things, but much higher for surrogates.
Rebecca: So surrogates for reporting high satisfaction with decision-making in medical care. I’ll just say very briefly when we look at things like health status, so patients quality of life and healthcare utilization, those things were really mixed and I would say mostly negative, but the thing that really stood out to Ryan and I is particularly when we looked at health status outcomes, is that all 100% of the outcomes that focused on things like surrogate, depression and anxiety, PTSD, complicated grief, caregiver burden, and one study that looked at caregiver distress, all of those were positive.
Rebecca: And so, even though we had a piece of mixed results, Ryan and I were like, “Okay, we know that patients and their families told us that they want to take burden off of their loved ones.” And the thing that really kind of came out very clearly from this data is it seems like advance care planning from these high quality trials that that’s actually what’s happening.
Alex: I want to just clarify one point and then give an interpretation of your outcomes.
Alex: Clarifying point for our listeners, when Rebecca and Ryan say positive, they mean that the advance care planning interventions or trials were beneficial for that outcome. And when they say negative, it doesn’t mean that they actually harm the advance care planning intervention, harm people. It means that there was no difference between the advance care planning intervention and the control condition. Is that right?
Rebecca: Yes. Thanks Alex.
Alex: And then my interpretation is, well, this is a fascinating finding that goal-concordant care, as far as it was measured is difficult to measure, meaning that the patients treatments in the setting of serious illness at the end of life matched their goals as articulated in advance, was largely not found, only in a very small proportion of studies was that positive meaning a substantial difference between the advance care planning intervention and those control condition.
Alex: But surrogates felt like they were more engaged in the process and satisfied with this outcome and had lower distress. And so isn’t that what we should be hoping for from advance care planning? And is this what you’re… It’s probably stealing your thunder. Like we shouldn’t be hoping for advance care planning to align perfectly what somebody articulates far in advance of when they’re actually ill, but if we can prepare the surrogates and the surrogates feel like they’re better prepared for those moments, they have less distress about it.
Alex: And they and the clinicians can work together to make decisions that may not align with what the person articulated in advance, because circumstances change and unexpected things happen. And this wasn’t really what they anticipated when they were talking about saying they didn’t want this or that. Is that the right track?
Rebecca: Yeah. I think that’s what the data is showing. And I would also say too, the work that Ryan and I and others have done have also shown that 15 to 20% of people would report that they don’t have anyone in their life that they trust to help make medical decisions. And so, when we think about this preparation, yes, it’s for surrogates, but it’s also for people. And yes, some people are going to roll into the emergency room and not be able to make medical decisions for themselves, but many people still are.
Rebecca: So I think this is something that can prepare people as well as surrogates. But I would say overwhelmingly, I think what struck Ryan and I, and Ryan, you can chime in here was really… It’s like, “Okay, we had heard all these things from patients and surrogates that this is what they want, and that they’re worried about burdening others.” Those are the positive findings that we’re finding from trials.
Ryan: Yeah. And also just how often those outcomes were actually, the secondary outcome or they’re done in the secondary analysis of the RCT that people are recognizing that this is an important outcome, but we can’t use that as our primary outcome because I want a concrete outcome like an advance directive and a chart, or the Holy grail outcome of goal-concordant care when the reality is like the best tool we have for goal-concordant care right now is probably a Ouija board to contact patient [inaudible 00:32:58] and see how things went. Which I will do that study if any funders are listening, I will 100% hire some paranormal researchers and publish a nice Halloween research paper.
Alex: But Scott Halpern, who we haven’t had in the podcast, we need to get him on had the paper in New England journal perspective about goal-concordant care, where he specifically calls it the Holy grail of palliative care research. And maybe it’s not such a Holy grail and we should stop calling it that. And that what your finding suggest is that rather than driving towards goal-concordant care, we should be driving towards preparing the surrogates.
Ryan: And really, what is the best tool that we have for goal-concordant care right now. And Rebecca, you can help me out here, but there is the bereavement study that has been… The bereavement survey rather that has been used as sort of the best surrogate we have right now for really goal-concordant care, which is essentially what we’re talking about here, which is how families of these patients, how they feel about how things went essentially.
Rebecca: At BFS, the VA Bereaved Family Survey, but it’s interesting too, because I think when we think about the surrogate outcomes why would you have decreased complicated grief, decreased PTSD, if things didn’t go in a way that felt good to you and your loved ones, right? Yes, they might be proxy measures, but I think that they’re measures that people have to live on with. I think the other thing too when we think about advance care planning, and this is very true for me and my family, people who live on from those experiences, either trust or mistrust healthcare.
Rebecca: Maybe have their own personal, like I said, PTSD or other anxiety and depression that winds up affecting them. This can have a ripple effect across multiple family members, across multiple healthcare actions that aren’t just for this one patient.
Eric: So I got a question. So advance care planning takes time. It takes expertise. You got to train people how to do it. It takes physicians or social workers, a nurse practitioners time, from a healthcare perspective, it’s an expensive endeavor. It’s not free. Even if you’re not just buying… Let’s say you are, like not taking somebody’s video advance directive or advance care planning thing, but you’re just doing it within your system. Like the time it takes is going to cost money.
Eric: Is it enough to say, “Oh, no. This intervention may not affect healthcare resources or utilization, or we don’t really know about goal-concordant care because it’s a Holy grail.” But for that patient’s family, it may decrease burden. They may not be in our healthcare system. They may not be a Kaiser or VA, patient of that family member. But we think it’s important enough that we should do this. Is that the best argument that we can make?
Rebecca: Well, if I unpack a little bit about what you’re saying, first of all, I would ask you, what do you mean by advance care planning? Because you just said it took a lot of resources and a lot of time and a lot of discussions. Whereas, I think you guys know, because I’ve been on this podcast before. I’m actually waiting for my SNL kind of jacket, I don’t know how many times I need to be on here before I get my GeriPal jacket. [laughter]
Eric: We ordered GeriPal face masks. It’s not a jacket.
Rebecca: Okay, great. Maybe I can get that.
Eric: So coming soon.
Rebecca: But I think the trials that we’ve done and prepare for people who don’t know, prepare for your care.org, which focuses on one pillar, focuses just on patients. Didn’t use healthcare system resources, didn’t use train facilitators, and still was able to show that people were able to engage in advance care planning on their own. And I would say there was a study that was a follow-up study that was published in JAGS in May, which to me was the most important part of the whole trial.
Rebecca: That showed that prepare this online easy to use tool, empower people to speak up about advance care planning and their wishes to their doctor who hadn’t… We didn’t give any interventions to them. So just saying that it doesn’t… There are many people around the country, many of my friends and colleagues that have many different interventions that don’t have to be expensive, can be used in vulnerable population. So I’ll just put that as a caveat.
Rebecca: The other thing I would say, because I think that people have asked me like, “Oh, well, should we still be doing research on advance care planning and is it worth the cost?” And things like that. And I would say the piece that really hasn’t been, I think given enough attention, or hasn’t really been looked at, is really going back to implementation science. A lot of these studies have looked at, including studies we’ve done, have looked at these individual interventions and then tested them in sort of not real world settings.
Rebecca: And then some people will say, “Oh, well you take stuff to real world and it fails, so I guess it just isn’t sort of worthwhile.” First of all, I would say that there’s more and more pragmatic studies that are coming out in advance care planning and we’re in the middle of one right now. We’re in the middle of a large pragmatic study with UCLA and UC Irvine with our collaborators Wenger and Anne Walling. And I can tell you implementation science is where it’s at, because it is so complicated when I think just in terms of getting this done at UCSF, we had to get buy-in from like medical leadership and the directorship.
Rebecca: And we had to talk to the Epic team about figuring out what’s going on with the EMR and where are people going to be putting this information and documentation, that took over two years. Then you have to talk to the front desk staff and the people who’s scanning these forms. Then you have to talk to your patient advisors to see like when do they want to get this information and how do they want to get this information? So you might have a tool or an intervention, but it’s really the research about implementation science, about how can you do it effectively?
Rebecca: I would say that that might be true, even if you’re doing community-based participatory research. And I would also say that what we know about implementation science is that there isn’t a one-size fits all model, and what works in one workflow and in one health system may need to be tweaked sort of in another. And I think we’ve been kind of trying to squish these like square… What is it? Square pegs in round holes and then wondering why it doesn’t work, because maybe you have these like large stakeholders that haven’t been engaged.
Eric: So I think thinking back to… We just did a podcast with Tom Gill about a month and a half ago. And in that podcast, huge study, the stride study, looking at prevention of fall-related like bad outcomes. Tons of patients included in this multi-site, negative, just didn’t work. And one could argue, “Oh my God, like fall prevention, I guess doesn’t work. We should not do fall prevention,” which probably is not the right take it’s that particular intervention, when you did it as a pragmatic study, didn’t work potentially because of fidelity issues, are people actually following up on doing that? And the answer is no.
Eric: I’m thinking back to Susan Mitchell’s recent article that came out in Jim, I am on An Advance Care Planning Video interventions and nursing home patients. Another great study, basically pragmatic study show that this video intervention did not work in nursing homes. Didn’t affect things like burdensome treatments, hospital transfers, hospice enrollment, as far as their primary outcomes. Is that the same? Should we be thinking about it the same way as far as these pragmatic studies that are coming out?
Rebecca: I mean, I think both of those studies, like you’re saying, it was sort of a fidelity issue and anybody who’s done pragmatic research will tell you that it’s incredibly hard for those reasons.
Alex: I just want to make sure our listeners know what fidelity is.
Rebecca: Oh, it means that basically people are following the research protocol or they’re doing what they’re supposed to be doing.
Alex: Thank you.
Rebecca: So for example, in Tom Gill’s study, that means that all of these… I can’t remember, there were a lot of sites, like 30 sites or something, that each of those sites would be rolling out the intervention exactly the way that they’re supposed to be doing it. And I think the one thing that I have learned in doing the pragmatic trial that we’re doing and just seeing where things have been positive or things that have worked in healthcare systems, that if you do not have buy-in and that you don’t have champions that are going to take this on and do it in the right way.
Rebecca: And if you don’t have incentives at the leadership role to have it work, it just won’t go. So what do I mean by that? I would say advance care planning and maybe fall prevention, maybe very similar to advance care planning in the sense that like you think about advance care, nobody owns it. So advance care planning, isn’t a service line like geriatrics or palliative care, where you have multidisciplinary people who get paid for and reimbursed for doing things.
Rebecca: Advance care planning is sort of this thing. And I can tell you research actually that’s been done including… I don’t know if you’ve ever had Ann O’Hare on your podcast. She was here at UCSF, she’s a nephrologist at University of Washington. She did this study where she asked nephrologists, whose job is it to do advance care planning and they said the primary care providers. And you ask the primary care providers, and you say, “Who should be doing advance care planning?” And they said the nephrologists. So nobody wants to own it.
Rebecca: So you have this thing that people think is important and nobody wants to own it. So if nobody owns it, how’s it going to actually take hold and move forward? And the only way that I’ve ever seen it work is when leadership thinks it’s important. And I’ve given an example from UCSF. So we started this pragmatic trial and advance care planning wasn’t on people’s leaderboards, it wasn’t top priority and it was really hard to get anybody to talk to us.
Rebecca: But then UCSF entered into these sort of arrangements and agreements. They’re something called prime, which was a Medicaid reimbursement thing for public hospitals, where people… And they actually volunteered to have advance care planning be one of these 80 metrics that they would get reimbursed for. Well, all of a sudden, advance care planning is super important to the health center and all of a sudden we had people that we could talk to and we could start moving forward with some of this work.
Rebecca: But just to all say, there are different priorities that get shifted in the healthcare system and if advance care planning is on top of that, things can go in a large way. And if it’s not, it can be very hard to implement these things, especially with high fidelity.
Alex: So we got to wind down here. My last question is that Sean Morrison made this analogy to his family’s Ford Pinto and how they tried to repair it and fix it up and it just kept breaking, and they probably should have just given up on it and not invested anymore. Do you have any response to that Pinto analogy that our listeners could grasp? Because that was so clear for people and I think resonated with a lot of readers and listeners.
Rebecca: Yeah. Ryan, is it okay if I take this one?
Ryan: Yeah. I love your approach to this.
Rebecca: Yeah. So Ryan and I have thought about this and we actually thought about putting a car analogy actually in our scoping review. And I’ve talked a lot about this also with Susan Hickman, who’s in Indiana. But instead of advance care planning, be the Pinto, I’m going to walk you through what we’ve come up with, because it makes much more sense to us. That when you think about the destination and where you want to go, that’s value concordant care.
Rebecca: When you think about the road or the highway, and June Lenny who many of you know, talked about basically serious illnesses like flying down a broken highway. So when we think about this highway, that’s really the US healthcare system, which has insurers and CMS and legislators and providers all sort of go into that. The car to us is actually access. Do you have a Pinto or do you have a Cadillac in terms of your access to healthcare just in general?
Rebecca: Then when we’re thinking about this car who is driving, is the patient driving, is the surrogate driving, is the clinician driving? And then who do you have in the car with you and how many backseat drivers do you have? Then to us, advance care planning is actually the GPS or the map. It’s the tool that can help you figure out where you’re going and maybe why you’re going there.
Rebecca: And then when we think about palliative care or geriatrics or people doing goal-concordant care, that’s really roadside assistance like AAA or something like OnStar. And so when we go back to the map analogy and people say, “Well, do you really need preparation for that? Do you really need to prepare to have this map?” And I think Ryan and I were talking, it’s like, “Well, how do you know what the destinations are? And how do you decide on a destination or the route that you want to go? How do you know how to put the address into the GPS?”
Rebecca: Right? How do you know and learn… How do you deal with backseat drivers who are trying to tell you what to do, but maybe it doesn’t align with your values and goals? And how do you prepare for recalibrating if your exit is closed? And if you have to call AAA or OnStar, how do you prepare yourself to actually tell people where you are and ask the questions that make the most sense?
Alex: That’s great. So your response is Sean, your Pinto analogy is way too simplistic.
Alex: Life is not so simplistic and neither is advance care planning.
Eric: I love that analogy at the end. And I think it’s a great place for us to end this. Big, thank you for joining us today.
Rebecca: Oh and we want to thank our co-author.
Ryan: Oh yes, Ishmael was a huge help in this endeavor. So thanks.
Eric: Great. Well, Alex you want to wake us up? By the time everybody’s heard this it’ll be October.
Alex: That’s right.
Eric: Ryan and Rebecca, big thank you for joining us today.
Rebecca: Thank you.
Ryan: Thank you guys.
Eric: And a big thank you to Archstone Foundation for your continuous support of the GeriPal Podcast and to all of our listeners for supporting us. Please share us on your favorite podcasting app and throw out a review for us too if you get a chance.
Alex: Thanks folks.