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Our guests today present an important rejoinder to the argument that we should refocus away from advance care planning (ACP).  Sarah Nouri, Hillary Lum, and LJ Van Scoy argue that diverse communities are asking for ACP.  Sarah Nouri gives an example from her work in the LGBTQ+ community of a trans woman who was buried as a man because existing laws/rules did not protect her wishes.  Others cited the call from communities to meet them where they are – be they senior centers, Black-owned businesses, or churches (we have a podcast planned in the fall with Fayron Epps and Karen Moss on the church setting).  It does seem that if communities, particularly historically marginalized communities, are interested in ACP, that fact should carry some weight in how resources are allocated to research and health care financing.  

We additionally have a debate/discussion about which outcomes of ACP matter most, including Terri Fried’s commentary in JAGS that caregiver outcomes matter more than goal concordant care (the “holy grail”), completion of advance directives, or changes in health care services use.  Did the caregiver feel heard and understood?  Did they have PTSD? Complicated grief? Depression? 

Group visits are one way of reaching diverse communities to which advance care planning has not traditionally been targeted.  In a group visit there is a social norming effect – “if my neighbor is doing it, perhaps I should be doing it to?” 

Please tune in to hear more, and listen to the whistle of the “Friendship train!” 



Community Based Participatory Research and ACP in Latinx communities:

Community based ACP in the Black Community:

ACP in the Chinese American Community:

Group ACP in primary care:

Project Talk Website:

Project Talk Trial Protocol Paper:

Hello Article (including Black churches):

Communication Quality Analysis:

Conceptualizing Surrogate Decision Making:

What counts as a surrogate decision:

For e-training modules on ACP group visits:
Click on the Register link (upper right corner). A pop-up box will appear and enter your email address and set up your password. For Registration Code, enter: ENACT (not case sensitive).

The ACP Group visit implementation guide is available here: Scroll down to “Innovations in ACP page”


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

Alex: This is Alex Smith.

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

Alex: Today we are delighted to welcome three first-time guests. We have Sarah Nouri, who is a palliative care doc and researcher at UCSF. Welcome to the GeriPal podcast, Sarah.

Sarah: Thank you.

Alex: And we have Hillary Lum, who is a geriatrics and palliative care researcher at the University of Colorado. Welcome to the GeriPal podcast.

Hillary: So great to be here.

Eric: And we have L.J Van Scoy who is a pulmonary critical care advance care planning researcher at Penn State Hershey Medical Center in Pennsylvania. Welcome to the GeriPal podcast.

LJ: Thank you so much for having me.

Eric: On today’s podcast, we’re going to be talking about improving equity in advance care planning. But before we jump into that topic, I think somebody has a song request. Is it you?

Sarah: It is. I would like to request the Friendship Train by Gladys Knight and the Pips.

Eric: Why are you picking this song?

Sarah: Yeah, I picked this song because it’s all about community and love and justice, and I think it’s in line with our theme today. And I love Gladys Knight.

Alex: Yeah, great choice. Here’s a little Gladys Knight without the entire soul band backing me up.

Alex: (singing)

Hillary: Fabulous.

LJ: Wonderful. Even without the full band.

Eric: Well, thank you, Alex, for that rendition. All right. We’re going to be jumping in the topic advance care planning, and especially how to improve equity in advance care planning. Talking about group advance care planning, a lot of stuff around it. I’m going to turn it to LJ first. LJ, a year ago, I heard from some prominent members of the palliative care world that…you know… we should move away from advance care planning. Advance care planning doesn’t work. I’m not sure if you read that article and whether or not it’s changed your mind or whether or not you want to do any more research in advance care planning. Your thoughts?

LJ: Definitely read it. I remember where I was when I read it and saw it. And as you know, it’s a great article. It got everybody thinking and it certainly got everybody talking. I credit that article with making us think very sort of introspectively about the work that we’re doing and why why we’re doing it. But it did not sway me to want to throw the baby out with the bathwater and not want to continue doing work in advance care planning.

LJ: I think that for me it just sort of reaffirmed stuff that I felt that we sort of already knew is that this is really complex and that it was really difficult and that outcomes that we choose to measure are probably not the right ones or difficult to measure or a combination of both. And if it was simple and easy to solve, then it would have been solved by now.

LJ: So that was kind of where I came down, I don’t know what Hillary and Sarah…what you guys thought?

Hillary: I certainly agree lots to think about. And, you know, I really leaned in from my perspective as a primary care geriatrician to hearing from what my patients and their family caregivers are asking me for and asking me about, and they’re asking me about how they can prepare. And so that’s really led to a lot of thinking about both in the moment, decision making, and also preparing oneself, preparing with other people around you from your community, and also talking with your health care team members.

Sarah: Yeah, I couldn’t agree more with that. But both of you really that and totally impactful article and I appreciate this chance to really think critically about what we’re all doing in this field from a research standpoint. And that’s also kind of where I leaned in. Hillary was hearing from patients and also hearing from our communities that we’re serving and just hearing for me, hearing that this is something that people at a community level wanted to learn about and wanted their communities to be engaged in is really impactful and I think speaks and speaks volumes to advance care planning role or importance as we move forward.

Alex: Can I ask a follow up here? I’m hearing that the communities are asking for it. I’m hearing that and hear that loud and clear. What are your thoughts about the outcomes? Advance care planning? Because I know this is also controversial and it’s been discussed. Do you think we’re measuring the right outcomes or what? What outcomes should we be assessing for advance care planning?

LJ: I’ll take that one that I feel really strongly that we are not assessing the right outcomes in advance care planning, and I think that’s part of the problem, is that we I think we do this in a lot of science and a lot of research in clinical medicine too. You know, we try to like hone in on like what is the one outcome, what is the one thing that we are looking to improve or affect?

LJ: I think that, you know, for advance care planning, it’s a more about process than an action or behavior. I know a lot of us and in the research we like use these conceptual models or we work towards behavior change or we want advance directive completion to be the the outcome, which is I’ll speak for myself. And I know Hillary too.

LJ: I don’t have a say in your research, but we like measure advance directive. Completion is our primary outcomes in our research trials and that sort of, you know, probably not the best approach. But I think the more important part of our trials and of our work is some of the qualitative and the mixed methods and the complex social processes that we observe and try to improve upon with regards to communication and process.

LJ: So it’s hard to measure those things, which is why we don’t and I’m excited that there’s different opportunities and fields to and ways to, to measure things that are perhaps a little more messy and they don’t come like tied up in a nice little bow like did you do your dance directive, yes or no.

Alex: Right. Yeah. Hillary or Sarah. Thoughts on that.

Sarah: Yeah I similarly feel like, you know, focusing more on the process, the qualitative kind of from a research standpoint, the qualitative information that we’re getting from folks. And I think it’s something that I’m kind of actively thinking about and struggling with because I think working with and working on projects in the community, there’s been multiple limitations around kind of how to what to measure and also how to measure and how to get people engaged in that process of kind of even measurement or reporting back.

Sarah: And so I think it’s a it’s an important question, and I think it might be different depending on the context and the setting.

LJ: Yeah.

Alex: Hillary, what should we be measuring?

Hillary: Oh, I get the easiest question. You know, I feel that tension because it seems to be related to who I’m trying to measure it for. Am I measuring it for my health system or even within that, we’re part of primary care first value based payment program. So am I measuring it for that specific clinic level quality metric or am I measuring it for my research study?

Hillary: So those all differ. And then I also have to lay on pragmatically, can I even measure it? Is it feasible to measure, as both Lauren and Sarah have been saying? So I have not given you an answer. I see us measuring choice of a medical durable power of attorney. That’s what we call it here in Colorado. You know, choice of a trusted person as a starting place.

Hillary: And then I also see us measuring advance care planning documents on file in the health system so that that’s not where I want us to be. That is the current state of where we are right now.

Eric: Where do you want us to be?

Hillary: Oh, goodness. I think it would be helpful to have a person level report, which maybe we’re getting closer to in terms of heard and understood that someone has had a chance to think through what matters to them and do the preparation that is the amount that they want to do at that time and that it has been communicated.

Hillary: And with the health system, though, that’s flawed and anchors it to the health system also.

Eric: Because it probably doesn’t help if they felt heard and understood. And we’ve documented that, but we do nothing about it, which is, you know, if you look at like so like Dartmouth Atlas stuff is that it’s not just personal preferences that drives medical care. Health care system drives where you end up, which hospital, which state you live in.

Alex: But I’d challenge says it’s okay to disagree with each other in this podcast I disagree with Eric here. Terry Freed had a wonderful commentary in Jags where she argued that we need to move away from these. Like, does it actually affect the type of care that a person receives and move more towards that? Did they feel heard and understood psychological outcomes in the caregivers that the caregivers and whether they felt like they’d been listened to, you know, have less like depression, PTSD, anxiety after the death is actually more important than whether, you know, the health system got the document and, you know, care plans were altered and they stayed out of the ICU.

Eric: Yeah, I would agree. I mean, the problem isn’t that we don’t most of the time we don’t even look at the advanced directive, which is the problem right, with advanced directive and thinking about it. So I love the idea of like looking at the caregivers. I guess my question was more as we think about process, as if we just look at one side of the equation, the process, you know, does a family member or caregiver feel understood?

Eric: But the health care system doesn’t change at all and ignores what’s important to people. Is that really helping sort thoughts from our guests on this disagreement Eric and I are having?

Sarah: I was also going to reference Terry Freed’s commentary around moving towards thinking about caregivers and surrogate decision makers. And I think some of the findings that have come up in my research are that advance care planning really serves as or can serve as a tool for agency and empowerment and a kind of way to navigate a health system that’s built on and with a lot of structural racism.

Sarah: And I think in that way, as I reflect on that, I think, well, I don’t have a good answer on how to measure any of those things, or at least throughout a process. But I think as we think about it, as this tool for agency and how you can kind of bring your I think you had a recent episode with a few folks on your inner circle, and I love that phrase.

Sarah: But as you bring your inner circle into your care, you know, how does that that that feels like an important group to be assessing in terms of psychological outcomes and kind of what their experience with the process is like as they’re navigating illness and serious illness.

Alex: LJ, are you going to add to that?

LJ: Yeah, I was going to add, you know, one of the things that I think that this whole debate has really done is taken what some of us in research have been discovering or that we maybe take for granted in our qualitative data, for example. And it’s really brought to light the fact that like feeling heard and empathy and feeling like they were listened to is not something you can sort of measure necessarily quantitatively.

LJ: And so one of the things that was really, I thought, really interesting in a in a research study, there wasn’t my research study. It was Michael Green and Benny Levi’s research work. And I was doing the analysis of some of their interviews. And what we discovered in that project, it was a long eight year project of a decision aid, you know, very cognitive and sort of knowledge focus.

LJ: But what was really interesting is when we started analyzing these interviews, people like, we’re not talking about the same thing when they were talking about advance care planning and when we talked about like, well, what is a surrogate decision? We couldn’t agree. We couldn’t agree between our 15 person research team and our research participants couldn’t agree. And then we were like, Well, what is a medical decision?

LJ: And we couldn’t agree there either. Well, what’s a major medical decision? And so it actually this this little paper generated out of it. I remember thinking when I was writing it, I was like, I don’t know where I’m going to publish this thing. Like, who’s going to care about this whole, like, conceptual thing? And then, boom, these papers hit and it’s like, I’m really grateful because now that paper I got right into JAMA Network Open because it became so important because like the way that we conceptualize and the way we think about this and the way we define it is really different than how our participants and how our patients are defining it.

LJ: And I think that’s one of the reasons that we’ve not done a very good job in research around…

Eric: How are patients defining it?

LJ: Well. So they were really conflating surrogate decision making with advocacy. So if we said, like, did you make a decision while one of your loved ones was in the hospital, they would say, Oh, yeah, absolutely. But, you know, I made sure that, you know, when they wanted to hang vancomycin, I told them no, they couldn’t hang vancomycin. They needed to pick another antibiotic because of reason X, Y or Z.

LJ: And it was sort of more like patient advocacy to say like, you know, well, we vancomycin hasn’t been good for this patient in the past or, you know, it wasn’t really a medical decision in the way that we would think about end of life decision making or, you know, CPR, no CPR, those kinds of decisions. It was more about just like advocating like, well, I think he should get his pain meds 30 minutes earlier than it’s scheduled.

LJ: And that’s not necessarily what we’re talking about with advance care planning. Yeah.

Sarah: It’s funny because I would yeah, I was just going to say I would advocate that in many ways. Like those are I was thinking about Rebecca Story’s new kind of conceptual model around care planning, the care planning umbrella and thinking about like even at that level of kind of decision making that perhaps that is you know, I was just going to say it’s funny that you said none of you could agree, because I feel like maybe that is kind of part of this medical decision making.

Sarah: And that is, I think, some of the advocacy that I’ve also heard from patients and the kind of advocacy that they’re hoping for from their inner circle. And so it’s interesting, too. Yeah, I agree. There’s so much disagreement or just different perspectives on what that is and what it means.

Eric: You know, the other thing that came to my mind reading about this debate is often it’s like, who? Who should we be targeting with advance care planning or whatever term that we want to use it? Like probably not like healthy younger people is the argument. And I wonder when we think about targeting particular population, it’s not just, you know, how seriously ill they are.

Eric: How have we done so far with targeting advance care planning amongst all different populations?

Sarah: I think that’s a great question. I think all three of us are probably ready to answer that to some extent. And I’ll just say that I think what we know is there’s been so much greater advance care planning research and and at many levels, at a at an individual level, at a health system level, at a policy level. And still these are there are some big disparities that persist. And one of the things that I’ve enjoyed doing as part of my research is working with directly with communities from the get go to try to answer this question.

Sarah: And I think some of what you know, a lot of what came up in some of my recent work is that within different populations there are groups that may benefit from advance care planning, even if they’re younger, healthier, like folks who come from perhaps have a more vulnerable situation, like folks who are trans identifies trans or the LGBTQ community, that there’s a special need for that population, even within already kind of underserved or systemically…

Eric: Is that because the traditional surrogacy hierarchies often don’t work for those communities?

Sarah: Totally. And people shared stories around knowing, you know, a trans woman who was buried as a as a man at the when, you know, after they died because ultimately the people making the decisions were that person’s family. And that family was not necessarily a trusted network. And so I think part of that around surrogate decision making and also respecting wishes and identifying the people that really are your trusted network.

Sarah: So I think and there are definitely to answer your original question, Eric, that there are populations and and maybe even populations or groups within certain populations that the three of us are working with that have potentially special needs around advance care planning.

Sarah: Hillary or LG, I’m sure you’ve got a lot to say too.

Hillary: I’ve been thinking about your question, Eric, and whether we need to develop tailored interventions or is it about accessibility? And the recent work that I’ve been doing has been more on the aspect of accessibility or inclusion. Is it possible for as many people as possible to access the type of intervention that we’re offering? And in that process of seeing whether individuals desire to participate in something that the clinic is offering or something that an organization is offering, is it appropriate to have flexibility to adapt the intervention?

Hillary: You know, I don’t know that there’s enough time or money in the world to develop specific interventions for every specific population. So I’ve learned more into the adaptation and being mindful of context and cultural aspects needs, preferences, and that can get a little bit into creating something together or adapting something together with the members of the community who we hope are interested in in sharing this with others in their community.

Eric: Yeah, and particularly you’ve done part of that as accessibility is, is group visits. Is that what you’re talking about?

Hillary: Yeah, I’ve looked at group visits as actually a means to integrate, hopefully advance care planning into primary care in sort of my area of interest where I’m not actually developing any specific new decision aid or a new advance care planning intervention. I think one of the strengths of a group visit is that you can choose the materials that you want that are actually most helpful to the individuals who come to your clinic.

Hillary: So I think it’s a complex and intervention for sure. Groups are more complex than one on one, though may have sufficient opportunity to tailor to the individuals who are part of your clinic or part of the community coming to your group.

Alex: And just to be clear here that the groups who come together do these advance care planning, they might be from a clinic, but they may not know each other at all. In fact, they’re less likely to know each other than to know each other.

Hillary: Absolutely true. And we really love the group Dynamic Magic, the special sauce that I think really embraces that people can learn together, in part because they come with different questions and can learn from one another and have different cultural backgrounds, and they bring all of that there. And in fact, the facilitator is not the teacher. And instead in facilitating the discussion, there is actually increased agency of the people who are there.

Hillary: We our groups end up being two in a row and it is great to see how when they come back for that second group, they are really even checking in with one another. Because you’re right, they didn’t necessarily know each other coming in, likely didn’t, but are checking in with each other.

Alex: Well, what’s like what’s a question that would be asked in a group

Hillary: Very pragmatic.

Hillary: What do you do if you have your phone? But the EMS doesn’t know your documents, you know, just like those nuts and bolts aspects, because some individuals have a sense of, okay, it’s all about documents. So we try to broaden beyond that. And then individuals will still have questions of really, how can I help my wishes to be known?

Hillary: And we get to spend a lot of time thinking through that and different scenarios that are real life situations that the individuals bring in with them to the group.

Eric: And do you use any specific tools that are…

Hillary: Yeah, we’ve been doing groups over the past ten years and have used a number. We’ve used the conversation project starter kit, including actually making a two page version instead of the larger one. We’ve used some resources from Australia, some great videos that have fit well and we’ve also used Rebecca Sorority’s Prepare for your care. In particular, we use the flexibility step because that’s often a concept that many have not thought through.

Alex: Yeah, you mean like how much flexibility would you want your surrogate to have? These decisions are fixed, you know, please don’t change them under any circumstances or my surrogate should have a lot of flexibility or leeway, you know, to adapt to the circumstances and do what’s in my best interest at that time is that we’re talking about Hilary.

Hillary: Yeah.

Eric: Yeah. And Hilary, you’re focused. It sounds like group work in a health care system. So in clinic, I know both Sarah and LJ, you’re doing this in the community. LJ Do you want to describe what you have A big nature supported project around this group visits in the community.

LJ: Yeah, well, it’s, I.

Eric: Guess not group visits, but…

LJ: We call it…

Eric: Group advance Care plan. That group, what would you call it?

LJ: Well, we call it Project Talk which is just, you know, our name but essentially what our work is, is really using one tool. Well, actually, that’s not true. It’s a it’s a trial. We’re comparing two different tools. But a lot of the work that led up to this, we were working with the Halo game, which is like a it’s very actually as I’m listening to Hilary, I’m like, it’s so similar to what you’re doing, except that the Halo game is really just like it’s a set of open ended questions that participants can come together and like play this game.

LJ: There’s chips and there’s rules and there’s a coin flip and a winner and a quote, loser at the end. No losers, of course, But it had it’s really like brilliantly designed around like game design theory and some psychological safety tools. And and what’s really interesting about it is that we don’t bring in any knowledge. And what Hilary was saying about how like the people they come together and they check in and they they they learn different things.

LJ: They come in with different questions. We actually find that in our group activity, which is in one arm of our trial, we’re testing the Halo game where it’s, you know, these open ended questions and people may bring their family, they may be playing with strangers and it’s very user generated. We don’t push any information at them. It’s all generated within the context of the game.

LJ: And so people feel very comfortable and very safe. And, you know, there’s no didactic and there’s no lectures and there’s no PowerPoints. And it’s just very like gamified approach that we found, you know, in the research we’ve been doing in this game for like the last ten years, people say over and over how just having it as a game, calling it a game makes it a safe environment and a non-threatening forum and a safe structure for them to share and learn from each other and explore.

LJ: So people will like have knew like, Oh, I never thought of it that way. You know, when they’re going around answering the questions and then listening to other people as the game is played. And so the project talk trial is testing that approach versus a more traditional, which equally valid, which has more of that knowledge. Knowledge push the we’re actually testing the Conversation Project toolkit in our second arm, and that toolkit is great because it does provide knowledge and background and stories.

LJ: And there’s, you know, a PowerPoint didactic and it’s sort of a more traditional approach. And so the trial is really looking to see does the gamified approach versus a traditional approach make a difference? And then we have a control arm as well. So we’ll be able to test all the tools against each other and…

Eric: What’s in the control arm?

LJ: It’s another game. It’s called table topics. It’s an awesome tabletop game I play with my kids at dinner and it’s the exact same structure as the Halo game, except instead of open ended questions about like advance care planning or end of life, they’re like silly questions like, you know, what do you love about your hometown or, you know, like more icebreaker conversation?

LJ: So it’s an attention control so that they’re playing a game, they’re doing the same structure, they’re having the same camaraderie in our control.

Eric: And where are you in in the midst are you in the midst of this trial or are you getting close to done?

LJ: Well, we just saw perhaps a big milestone. We just passed halfway. And so, actually the trials are conducted all over the US. And so we’re traveling. We sent a research team out to partners in the communities. So we go to churches, we go to hospice agencies, we go to public libraries, we go to health systems, sort of anywhere.

LJ: There’s like a practicing clinician that wants to bring advance care planning into their community. We go we have Spanish speaking research assistants. We work in underrepresented black communities and low income, white, rural communities for hopefully doing some Native American communities. And so we’re about halfway through and still recruiting hosts.

Alex: So if you had a message for our listeners…

LJ: Yeah. So if anyone is interested in and in hearing more about the project talk trial, visit us at As we approach our second half of our project. We’re really excited because my goal is to hit every of every one of the 50 states and I think we’re at like 30 states so far.

Eric: We’ll have a map to that on our show notes. Just real quickly for our listeners, if they’re interested in this, how much work is it for them.

LJ: To be a host? So it really depends on sort of the work that you’ve already done. So you’re already out in the community and you’re already have your networks and your connections. It’s not a lot of additional work and in fact it probably saves you a lot of work. We provide a $300 stipend for like food and marketing or whatever we provide all the materials needed for the event.

LJ: We provide all the marketing materials. Really, where the legwork comes in is getting people through the door. And usually we want like 20 to 50 people to come to one of our group events. So some people find it to be like, Oh my gosh, 20 people is a breeze. Like I could do that in my sleep. And for some it’s a heavier lift.

LJ: So we found that it really depends on your experience and those sort of fingers that you have in the community.

Aex: Yeah, and before…

Hillary: And even though we’re on GeriPal, it’s actually not funded by the NIA. So this is individuals 18 and up.

LJ: Yes, that’s true.

LJ: Yes. So this is a NIMHD Health Disparities project.

Alex: And it would be okay if it was a geriatrician, say, who had a…

LJ: Oh of course yeah.

Eric: Before we move to Sarah, I’ll just sticking with you for a moment. One of the key aspects we want to cover on this podcast is equity. I know it’s early in that you haven’t completed a trial, but any lessons learned at this point or thoughts from you about adaptation to specific populations or groups or communities?

LJ: Oh man, yeah, I know. We’re so, so one of the things that our team is really learning, we’re a big team. We’re partnered with the Hospice Foundation of America. So we have a very national reach and we’ve been in communities all over the U.S. and we’re finding that each community is really, really different in our you know, we’re doing 15 Hispanic communities and there’s different dialogs, dialects.

LJ: So there’s Mexican, Spanish and Dominican or Spanish and Spanish, Puerto Rico. There’s all different types of Spanish speaking dialects that you have to incorporate. And so, like Hillary was saying, like you can’t possibly take one tool and adapt it for every contact and every culture. And so I think really important is the field of implementation, science and learning, how we can take our tools and adapt them for the, you know, unique cultures.

LJ: But what we are finding with the with the tools is that particularly in, you know, with some of our host interviews, is that when they make those little tweaks and turn to the to the intervention, it’s well received. All of these tools are acceptable. The population loves is so grateful to have these opportunities to have these stigmatized conversations.

LJ: And it’s okay to have these conversations. And and we found that no matter where we go, people are really thrilled to have us. So it’s been really rewarding for our team.

Alex: Mm hmm. And so one more question I can’t resist. What outcomes are you looking at?

LJ: Yeah. So the main outcome is advance directive completion, and that is again, a hard, measurable outcome. But one of the ones I’m most excited about is a methodology that I designed with my communication partner at Kentucky, Allison Scott, who we’re looking at communication quality analysis. So we’re looking at the communication quality that results when people have their group conversations over tool number one versus tool number two.

LJ: And I’m really excited to learn and focus on communication quality as an outcome as opposed to behavior as an outcome.

Alex: Mm hmm. Great. That’s fascinating. All right. We should turn to Sarah. Sarah, we have several over your published papers and abstracts and you’ve done work, as you just said, in the LGBTQ community, you’ve done work in black community, you’ve done work in the Latino community, you’ve done work in the Chinese-American community in San Francisco.

Alex: That’s a lot of ground and a lot of topics. And like LJ said, how long do we have? We’d love to hear about your research, and you’ve talked a little bit about the importance of equity in tailoring these is really starting from the ground up in what you’re trying to do here in advance care planning. Well, what lessons do you have have you learned from these terrific studies?

Sarah: Thank you. Yeah, I well, first, I want to say I’m very excited about all these projects because I think and actually a lot of what we’ve learned in our work is some of the similar takeaways to our but with a really different methodology and approach. And so that’s reassuring.

LJ: Yeah, that’s great.

Sarah: Yeah, so we basically engage in this community based participatory research project, so very local with several here in San Francisco. And, and I would say, you know, so we actually, you know, they were involved from the ground up kind of equal and equitable. And part of our work was doing capacity building and with different communities and community based organizations to kind of continue the work.

Sarah: But what we learned, I would say some big takeaways are that, you know, similar to what LJ said, the safe, trusted spaces are really, really important. And so there’s value in kind of taking this out of the health care system for some folks and having it in as in a trusted community setting with.

Eric: What’s an example of a trusted community setting?

Sarah: Yeah, well, so that’s a great question and I can say how much time do I have for that? So it was different in every community, but I’ll say in general and some senior centers housing My Lady senior, some of the Zero’s in town and also in the black community owned businesses were really highlighted as a trusted space. So whether that’s a restaurant or a jazz room or, you know, there were several that were specifically named here in S.F., so that was very different in different groups.

Sarah: But part of what made it trusted was not only the space but also the people leading, leading the event. And importantly, for those folks to be part of the community themselves. And then the other big takeaway was that in terms of your question about tailoring materials or that that tension we all feel is that, you know, we actually all the communities decided to use existing advance care planning materials and that, like Hillary and LG have said, have really been tested and evaluated so many times and shown to be effective.

Sarah: And so things like go wish there was a similar desire among folks to do, you know, to have a game of sort of an icebreaker or a way to facilitate a difficult conversation. So games like go Wish or in the the Cantonese community speaking community the heart to heart cards and then prepare for your care for five wishes.

Sarah: So using these existing materials actually works a lot of what was different and what was done differently in these communities that I worked with was really around the marketing. I guess more than anything, it’s really how do you attract people to this conversation and how do you design an event that breaks the ice, that makes it that kind of normalizes having this conversation?

Sarah: And how do we take advantage of the fact that we’ve got a group of people, like Hilary was saying, who can learn from each other and who also see appear from there from where they live in their same building and say like, Oh, well, this is my neighbor. And if they’re talking about this, I should be or I could be talking about this too.

Sarah: And so just creating that kind of peer to peer network, I think that a lot of the tailoring is not necessarily about the materials that we already have. But really, again, going back to what LJ said about the implementation and how do we find how do we get the word out to people about advance care planning? How do we talk about it and how do we get people engaged in it in a way that feels safe and productive?

Sarah: And a lot of that really feels like it’s around marketing.

Eric: Mm hmm.

LJ: Like delivering. It’s not just marketing, but like, delivering, I think. Yeah.

Alex: Right. Yeah. And I hear both of you talking about all of you talking about creating safe spaces and that, you know, sort of cognitive psychology, which we’ve talked about in this behavioral economics. And this nudges, you know, in lay lay terms that there’s this social expectation that if my neighbor is doing it, as you just said, Sarah, than I should be doing it, too.

Alex: I wonder what pushback it can’t all be positive. Right? There’s probably some pushback about this. I’m interested in hearing about that, like concerns about, you know, in, you know, marketing, advance care planning to communities that feel like we have been, you know, subject to so much systemic racism, particularly in health care, where there have been, you know, historic and present gigantic inequities in care.

Alex: Should this really be the focus? I don’t know. What are you hearing from communities in terms of, you know, countervailing perspectives?

Sarah: Absolutely.

Alex: Sarah, go ahead.

Sarah: Okay. So, yeah, I was just going to jump in to say that I think part of and there may have been some bias and kind of who was working with us realistically within the communities, but there was definitely a lot of conversation around that and at the same time that folks actually viewed advance care planning as a way to counter a lot of what you’re talking about, Alex, as a way to counter the structural racism, as a way to counter or protect folks like in the black community.

Sarah: A lot came up around young black men and black individuals dying much earlier, having a lower life expectancy, being subject to all kinds of violence, including within our health care system. And that advance care planning was actually viewed as, oh, this something that might give us a voice. This might is something that might actually give us some agency around decision making and in general, not just kind of end of life focus, really decision making throughout the course of someone’s health experience.

Eric: I also thought was really interesting because that was the same article that talked about the importance around agency and protecting intergenerational wealth, which I usually don’t think about or see when people are talking about advance care planning, they usually think about medical decisions and end of life care, but not financial aspects.

Sarah: Yeah, a really interesting and I think really important information. Going back to one of Jay’s points, I think early on about how do people define advance care planning and what does it mean to different folks, different communities. And it was clearly came out that really when we talk about advance care planning from a health standpoint, we should be thinking.

Sarah: And I think this is something I’ve taken into my clinical practice of we should be thinking about planning more broadly, really. And I know a lot of our social work colleagues and our nurses, I think at least in our practice, do a lot more of that. I think we can do more of as physicians to of and including that as part of a bigger life planning and estate planning.

Sarah: And that did come up as I really like maintaining intergenerational wealth or building intergenerational wealth. That was a super important topic that came up in the black community.

Alex: Mm hmm. And Hilary, it must have you doing this for ten years. There must be some patients for whom group advance care planning is not a good fit.

Hillary: Yeah, that’s exactly where I thought your question was going. And then it went about, you know, push back on advance care planning overall, which is a separate topic. But I definitely started this knowing that groups are not the answer for everyone. And I don’t expect them to be. I introduced this to clinics who might be interested in bringing this on the same way they might bring on a diabetes group visit or centering pregnancies.

Hillary: We know many federally qualified health centers in our area that have those prenatal center centering pregnancy group visits. And I approach it the same way that a group is not for everyone. And yet it can be something that if a clinic wants to take on implementing it can really be effective, efficient. And I also actually think it meets the quadruple aim in that as facilitators, it’s really meaningful to be present in these conversations.

LJ: Totally. And you know, the pushback. Hilary, it’s so you say that because like I was actually just at an event, one of our supplement events recently in a group with Alzheimer’s disease and, I was there just sort of observing the protocols and tweaks we had made. And I was just so glad to be back out in the field because I was listening to these two wonderful people with cognitive, mild cognitive impairment from this really impoverished area.

LJ: They were playing the hello game and they were having this conversation and they were like arguing with each other about like the right answer and the wrong answer and like, no, you’re you know, they were just talking about end of life issues. And, you know, really, if you’re going to be on a machine, you want that. And they were just like arguing.

LJ: And the facilitators, I could see our staff, they were a little bit uncomfortable because it was like, Oh, where is this going? And I was like, This is all it’s like, you know, this is just such good work that that these groups do. And I think bringing together people that may have different ideas or perspectives is like uber uber important.

LJ: And they left. They were all it was great. It was just such a good experience.

Eric: I want to be mindful all the time. Alex Any questions before I go to my last one? We’re going to do the magic one question. If you had a magic wand and it has to be used around this topic of advance care planning, what would you use that magic wand on right now?

Eric: Hilary.

Hillary: Yeah. I am going to pick up what Sarah was recognizing that from my patients, their families perspective, especially older adults with serious illnesses, advance care planning is one sliver of it. There is so much additional anticipatory guidance, unmet opportunities, a need, a thirst for resources, especially resources that actually resonate and would be things that they could see themselves being able to access and use.

Hillary: Like that’s the magic one. Advance care planning is a start. It’s one entrance in and it’s the one perhaps most accessible to me in primary care, but it’s part of a bigger ongoing need.

Sarah: Sarah Yeah, I love Hillary’s magic wand. I think kind of along the lines of some of our discussion that I hope we can continue to work to really decolonize advance care planning and take it in the work that we’re I think all three of us are doing to try to reach communities that are experiencing disparities. Despite so many interventions.

Sarah: I hope we can continue to find ways either as researchers or clinicians or advocates in the community, to really decolonize this process and framework and find ways to continue to make it speak to people and so that more folks are engaged and feel empowered through it.

Eric: Speaking of Alex, this is or not this is not going to be our last ACP podcast on equity and no, we are planning upon this. Listeners get a sense of how far out we plan this fall. We’re doing a podcast with Ferron EPS and Karen Moss about advance care planning in African-American churches. So listen for that. LJ Your magic wand.

LJ: If I could wave my one, I would find a way to say what it is like. What is it that advance care planning does for people? That’s helpful. And I think if I had a magic wand, that’s what I would want to put into a box that we could measure and report and say, Here it is, this is the smoking gun, this is why we should be doing this.

LJ: And we haven’t found it yet. We’ve certainly I’ve tried we’ve done this integrated variable that includes includes all these different types of outcomes, which is a whole other.

Eric: I guess with that outcome. It’s why we should be doing this or why it doesn’t work, right?

LJ: Yeah, right. Well, but we know … this is what I’m saying, is that qualitatively we know and I’m sure that that authored the articles would probably agree that there is benefit right in doing this work and having these conversations is just what is the benefit? How do we measure it and what is it? But I have no question in my mind that it that it has benefit.

LJ: Just that magic wand is what we need to figure out what it is.

Eric: Yeah, well, I want to thank all three of you for joining us. But before we leave, I think we got a little bit more of a teaching coming this way.

Alex: Everyone across the nation. (singing)

Eric: Thank you, Sarah, for that song request. Well, I thank you, all three of you, for joining us on this podcast. That was absolutely fabulous.

Sarah: Thanks for having us.

LJ: Thank you.

Hillary: Have a great one, this was fun.

Eric: Thank you. And all of our listeners, thank you for your continued support.

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