Pragmatic Trial of ACP: Jennifer Wolff, Sydney Dy, Danny Scerpella, and Jasmine Santoyo-Olsson

Eric 00:11

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:13

And Alex, we’ve got a full house.

Alex 00:15

With us, who’s a very full house today. We are delighted to welcome Jennifer Wolff, who is a health services researcher and gerontologist and professor at Johns Hopkins. Jennifer, welcome to the GeriPal Podcast.

Jennifer 00:28

It’s great to be here.

Alex 00:30

We are also delighted to welcome Sydney Dy, who’s a primary care doc, palliative care doc, and researcher and professor at Johns Hopkins. Sydney, welcome to the GeriPal Podcast.

Sydney 00:41

Thank you.

Alex 00:42

And we’re delighted to welcome Danny Scerpella, who’s a research associate at the School of Public Health at Johns Hopkins. Danny, welcome to the GeriPal Podcast.

Danny 00:52

Thank you very much. Excited to be here.

Alex 00:54

And Jasmine Santoyo-Olsson, who’s a social behavioral scientist and a fellow in the T32 Research Fellowship at the UCSF Division of Geriatrics. Jasmine, welcome to GeriPal.

Jasmine

Thank you.

Eric 01:07

So we have an amazing lineup of guests and we’re going to be talking about a pragmatic study on advanced care planning, which we’ll have links to in our show, notes for the actual article. But before we dive into the study and the implications it has for the practice that we do, I believe someone has a song request. Jasmine, is it you?

Jasmine 01:31

It is me. It’s called Laka Laka, which is a mariachi song and it translates to the skeleton. The reason I chose this song is because I’m currently working on bringing advanced care planning sessions to the Latino community. In our planning sessions, one of the biggest barriers to advanced care planning in this community is just talking about death. However, you know, if we think about that, death is actually already embedded in the Mexican culture. And you know, culturally, death is not something to fear, but rather something to embrace and even celebrate.

At least that’s the way Mexicans see it. And so this perspective actually helps affirm that it’s okay to talk about death. And so we’re actually starting our advanced care planning sessions with music that talk about death. And in a way, it gives participants permission to engage in discussions about dying. And so this is our way of supporting non English speaking families in advanced care planning. So that’s why I selected the song.

Eric 02:32

Great, Alex.

Alex

(singing)

Alex 02:34

All right, this was a fun one. Get to learn some Spanish for this one. I’ve had fun relearning Spanish. Recently took a trip to Mexico City.

Alex 02:44

Still suffering from some illness from there, which is why I was sick and not in the office with Eric today. But here’s a little bit of the song without a full mariachi band.

Eric 03:47

Thank you, Alex, and thank you, Jasmine, for that great song. How did Alex do?

Jasmine 03:51

He did great.

Danny 03:53

I love that. That was great.

Alex 03:54

Very generous. Thank you.

Eric 03:57

Okay, we got a lot to talk about. And interesting enough, this is a really fascinating study that just got published in JAMA IM in December of 2024. I think that the most interesting parts of this is I think we got to hear what happened in this study, but what do we do with the results? Can’t really talk about that until we talk about why did we do this study and what did we do. So I’m going to turn to you, Jennifer, first. So it’s great you’re a first author. This publication, jama I am on a pragmatic study, Advanced Care Planning. Why did you even bother doing this study?

Jennifer 04:34

Yeah, thanks for the question. It’s a great question. And boy, we have come a long way from writing the proposal in 2018 to where we are today in implementing a pragmatic trial using largely virtual modalities, when the proposal that we wrote was really geared towards thinking about supporting older adults with and without dementia in primary care and using embedded advanced care planning facilitators who would be physically embedded in the clinic. A lot has changed, but what motivated the study was a recognition that most advanced care planning interventional research had been undertaken in nursing homes.

But most people with dementia are initially diagnosed and medically managed in primary care, and they really desire clinicians to initiate these conversations but there are a number of really important barriers for these conversations taking place. So we proposed and used an existing manualized protocol, Respecting Choices, which had a large evidence base, but that had not previously been studied in the context of dementia. And what was notable for me and what really drew me into this space was a recognition that advanced care planning is a longitudinal communication process that ideally engages surrogate decision makers in repeated conversations. And I have a long interest in identifying family caregivers and supporting them in care delivery. And so this was really, in my view, a perfect window for reinforcing the role of family in primary care.

Eric 06:26

Great.

Jennifer 06:28

And I’m sure Sydney may want to chime in. She’s been a great partner throughout the proposal writing process and the study.

Eric 06:35

Yes. Sydney, you’re the senior author.

Sydney 06:37

Yes.

Eric 06:38

Let me ask you this. Why was this study important to you? Why did you want to do this study for me?

Sydney 06:45

So I’ve been Developing and running palliative care and hospice programs at Hopkins for about 25 years. And advance care planning is such an incredibly important part of that. And we know that advance care planning hopefully has more benefits than risks for people, but that there’s so much more that we need to do. And so it’s just wonderful to partner with Jennifer and the really important pieces about how we don’t pay attention to cognitive impairment and dementia and we don’t involve the family enough in these conversations, especially in our work in primary care.

Eric 07:24

All right, so I’m hearing what’s important. I’m hearing dementia patients or patients with dementia. I’m hearing family and caregivers. Danny, I’m going to turn to you. What did you do in this study and did it focus on those components?

Danny 07:39

Yeah, definitely. I mean, it’s one of those things where I’m going to have to watch myself for time because we could go on about this for a long time. It was a massive undertaking, something. The intervention itself is very straightforward. I think the elements are strong and they make a lot of sense. But the process of implementing this project across two big health systems in our area was very complicated and had its share of both challenges and rewards. As we went through this process, I would say that the first and most difficult part was kind of forging those partnerships with leadership within each organization.

Understanding, you know, trying. This is pragmatic. So the idea was we want to meet them where they are, follow their priorities, make sure that we’re not stepping on the toes of any existing initiatives or, you know, metric goals or things like that. So ultimately, you know, we had to get buy in at. At a high level to sort of step in and start, you know, tinkering with workflows that, you know, are kind of as healthcare is a giant machine in primary care.

Eric 08:37

And that’s because you randomized clinics, you didn’t randomize patients interventions. Is that right?

Danny 08:42

That’s right, yeah. We did it by the clinic level. And so everyone who’s in that clinic was. Was avail. Like the intervention was available to them, but there wasn’t. There wasn’t a push. There wasn’t, you know, we weren’t calling people cold calling people and telling to be part of this. They all received a similar mailing which basically served as an advert for what we were doing. The resources available within the clinic and those resources that were part of this study were never advertised as sharing choices, which was the name of the project. They were offered as usual care in those clinics. So they were just Additional resources that we were trying to say.

Eric 09:15

And then who were the patients just with dementia or were they. Every patient independent on age, who was included?

Danny 09:22

So we emailed to everyone 65 and older with an upcoming visit. We had a sort of a staggered mailing thing, but generally when people would schedule a visit, whether they actually came to it or not, that triggered a mailing to those people. And it was the different materials that we have. It was a letter from the clinic introducing it. It was information about our ACP facilitator. There was an advance directive, a blank one in there for their records, a patient and care partner checklist that was meant to be filled out before primary care visit. So we sent that to everyone 65 and older with upcoming visits, though we were tracking on our side the people who had diagnoses and things.

Eric 10:00

So the hope was that the FAC meditator would talk about advanced care planning before the. Before the primary care visit.

Danny 10:07

Yep, that was the goal. And. And as you can imagine, there’s a lot of complexity around that. So one of the biggest challenges that we got, and I’m sure this is true of many, many studies over the last five years, but we just as we were getting ready to launch this study, the COVID 19 pandemic hit, and we made a decision to continue and push through with the trial. But it. It required a big shift from what we originally planned, which was that these facilitators were going to be in the clinic meeting with these people face to face. So some of our approaches definitely altered based on the availability of what we could get done.

And so a lot of it was the facilitators calling out with the approval of the provider to the patients ahead of time to see, like, you have a visit coming up. This is what I do here. We’re just trying to do this for all patients. How can we have this conversation with you today? And that obviously brought up its own challenges as well.

Eric 11:01

And can I ask, are any of you respecting choices facilitators? Like, do you. What. What’s included? What happens when the facilitator meets with the patient?

Danny 11:12

Yeah, I mean, I’ll speak, but Jennifer and Sydney feel her jump in. We all got trained at it at the beginning, so we all sat down and got the training. It was a really interactive kind of thing, but essentially it is a conversation guide. There’s, like, I want to say it’s been a while is about five or six things that you go through, and you. And you cover the different topics. It goes into things like you Know, what is it? What is advanced care planning? What’s an advanced directive? What does it include? What does it mean? What doesn’t it mean?

You kind of go through the different, like life sustaining treatments, things like cpr and you ask about what people think about that and then you try to. There’s also education that goes with it, educating, like, what does that mean? Like in a real scenario, I don’t think a lot of people understand what CPR is outside of what they see on tv, where it’s sort of like this miracle thing that everyone does and then people sputter back to life. It’s a lot.

Eric 12:01

Does it talk about like outcomes, like the outcomes of cpr? And is it at all individualized to the patient?

Danny 12:07

I don’t know how individualized it is. And Jennifer, if you go ahead. Jennifer. Yeah, yeah.

Jennifer 12:11

So the conversation guide is meant to be delivered by non clinicians. And that was one of the reasons that was appealing to us is that the conversation guide and could be delivered by lay facilitators in partnership with the clinical practice. So the idea is to really normalize advanced care planning as part of clinical workflows. And Eric, you asked about whether the ACP conversation would happen before. We were agnostic on the timing. Ideally the conversation would happen before, but also clinicians were able to make referrals to facilitators.

The broader idea was to try to motivate conversations to occur and to also allow patients to bring in completed advanced directives if they had one that already had been developed outside of the ACP facilitator conversation. And you also, you mentioned whether we were targeting just people with dementia. Yeah, we did not do that because dementia is so often under diagnosed and there’s a lack of awareness. So we tried to normalize advanced care planning as something that was available to all older adults in the practice. And we did not introduce it as advanced care planning, but rather a communication initiative laying out a variety of strategies that patients and families could use to improve communication with primary care clinicians and the team.

And that included scheduling a visit with a, with a facilitator who had been specially trained. It included the patient family agenda setting checklist. And it also motivated the idea of the patient portal and shared portal access for care partners who would then have their own login identity credentials. Because we recognize for people with memory impairment, often that can be an important way of facilitating interactions between families and clinicians.

Eric 14:13

And the caregiver was encouraged to be at these facilitated meetings.

Jennifer 14:17

Yes.

Eric 14:18

Okay.

Danny 14:19

As often as we could.

Alex 14:20

Can I ask Sydney, like when you did the training as a palliative care doc and primary care doc, how did this seem similar or different from what you do in primary care or palliative care?

Sydney 14:32

So I think what you’re asking about somewhat is what you do in a trial and what health systems want and what we do for quality metrics is often just really different from what we’re doing as, as physicians. I think that these pieces about making sure that we’re engaging families, making sure families are aware of what’s going on, these are all really important parts of advanced care planning.

But doing a protocolized advance care planning that’s focusing on advance directives and having the advanced directives as an outcome and meeting those quality metrics, those, those are pieces that maybe in an ideal world, like Jennifer is saying, and Danny, we would be able to be more flexible and individualized, but that’s not necessarily how a pragmatic clinical trial that you’re doing across a couple of health systems and need to get leadership engagement is able to work.

Eric 15:32

And Danny, I’m going to go back to you. So you randomized clinics, you didn’t randomize the patients. So all the patients in that clinic over 65 were included. Real quick, when you measured the outcomes, was it in everybody in the clinic or just those who got the intervention, who got the actual facilitation? How did you think about your primary outcome and what was it?

Danny 15:55

Yeah, that’s a great question. I’m going to be looking at Jennifer to back me up, but I think the main idea is we wanted to look at the effect of people, patients who were in the intervention group versus those who are in control clinics who are just getting usual care. We were extracting data for all those people, but we weren’t doing anything in those clinics. So that’s the first part of it. For, like the end of life care, the potentially burdensome end of life care, we definitely looked at patients who had serious illness, which is a designation that we were able to use through different procedure codes and diagnoses that patients had. But we were very much looking at what happened in the intervention clinic versus the control clinic for the outcomes.

Eric 16:35

So, Jennifer, going back to that, so this was the intention to treat everybody in the clinic, or was it just those who actually got the intervention?

Jennifer 16:46

No, it was. It was all patients who had a scheduled visit at the intervention or the control clinics.

Eric 16:54

Okay.

Jennifer 16:54

This was at two systems. And we did look at the extent to which there was overlap. I think we excluded a few patients that were. I can’t remember, actually it was. There were very few patients that were seen at both in both groups. And we did sensitivity analyses, but they didn’t.

Eric 17:14

So this is a true pragmatic study. You’re going to do this intervention in these clinics, you’re going to randomize the clinics and you’re going to see what the outcome is. What were the two outcomes that you were looking at again, the big ones?

Jennifer 17:26

Documentation of end of life preferences. Initially, we proposed only looking at documented advanced directives, but our two health system partners felt strongly that we needed to include the molst. So we ended up with a composite measure at their request. And so that was across all older adults who were established patients of those clinics. And we looked at newly documented end of life preferences. So for patients who had documentation at baseline, they were excluded from the evaluation of the outcome.

Alex 18:02

I’m just going to clarify for our listeners who may not be familiar. MOLST in this case is probably the Maryland Orders for Life Sustaining Treatment molst. Great, thanks. Go ahead, Jennifer.

Jennifer 18:13

And then Sydney was very involved in making decisions about our second outcome of potentially burdensome care and end of life. So she would be the best person to speak to how that measure was operationalized and why.

Eric 18:27

Sydney, what’s a potentially burdensome intervention at the end of life?

Sydney 18:32

So this is a way to look at the outcomes that you would expect directly related to advance directives and similar to most other trials and standards that are out there. So it’s looking at things that you would expect that someone who, again, ideally trying to define the population with serious illness who might not possibly want these interventions. So intubation, cpr, feeding tubes. A real advantage of our study, something that Danny works really hard on, is that that in Maryland we were able to look at these as statewide outcomes and we were able to pull information from the health information exchange to be able to look at whether this happened at any hospital in Maryland.

Eric 19:31

So it was interventions like feeding tubes, mechanical ventilation, dialysis at the very end of life. Wait, how is that actually defined? Like, how close to the end of life is it all just in seriously ill patients, I guess. Like if somebody just drops. Can you clarify that for me?

Sydney 19:49

Yes. So within. And Jennifer and Dani, correct me if I’m wrong, I have it all pulled up. Looking at the specifics, it’s within six months of the end of life for people who have a serious illness. So someone who has, for example, advanced cancer, as well as we can define those with ICD9 codes, again, a similar outcome people are looking at in a Lot of other advanced care planning trials. This is a pragmatic trial. So we have to collect what information we have available from Health Information exchange and electronic health records. We’re not collecting any of this information directly from patients.

Eric 20:33

And, Danny, how many different interventions were included on this list of potentially.

Danny 20:37

Oh, that is a question. It’s a lot. I mean, actually, when I say that, I want to put a caveat. There’s a lot of ICD10 codes, if you give me some.

Eric 20:47

But the big ones are like intubations.

Danny 20:49

Yes, that’s right.

Eric 20:53

Dialysis. Okay.

Jennifer 20:54

Yep, yep.

Danny 20:55

Those are the big ones. And I think in our analysis of, like, what were the most common, which we’ve done since the paper, intubation was by far and away our most common procedure. That happened across all patients.

Eric 21:05

An intubation will last six months of life.

Danny 21:07

That’s right.

Alex 21:08

All right, so to recap for our listeners, the first outcome was documentation either in the form of an advanced directive or a molst, which is Maryland’s form of the polst Physician Order for Life Sustained treatment. That was number one. And number two was potentially burdensome interventions. And those are things like intubation near the end of life among seriously ill patients.

Eric 21:31

All right, let’s jump into Sydney. What did it show? Let’s stick with the first one. Did it increase documentation?

Jennifer 21:40

Yes.

Sydney 21:41

So we did find increased documentation of the primary outcome in the electronic health records. The effect was really for advance directives and not for the MOLs or pulsed.

Eric 21:55

And that’s new documentation. If they had an advanced directive before and they did it again, did that count?

Sydney 22:01

Well, it’s what’s in the electronic health record.

Eric 22:03

Okay. So.

Sydney 22:05

Yes. What’s in the electronic health record? Yes.

Eric 22:08

So advanced care planning. Pragmatic Advanced care planning Intervention works for documentation.

Danny 22:15

It works. It works great. Yeah. We saw very strong effects for newly uploaded advanced directives and the like. And.

Alex 22:22

And, yeah, could we just say the numbers so we know what the absolutes are?

Danny 22:26

You know, roughly so in your adjusted models for uploading a new advanced directive, or molst. So we did it. And it’s a combined outcome as well as looking at it as just the advanced directive alone and the molst I believe on, but for the combined one. In our adjusted models, we had…about two times more people in our intervention groups were two times more likely to have an advanced directive or most uploaded compared to people in a control trial. If you’re just looking at new advanced directives in the same cohort, for our full cohort, they were Almost four times as likely to have an advanced directive versus people who are just in the usual care control arms.

Alex 23:08

So big relative difference. But I wonder if anybody has the absolute numbers, because I remember thinking, well, that’s kind of a modest proportion of people who completed an advance directive after this trial. Okay, I’ve completely sidetracked this.

Danny 23:21

No, you’re looking at the. You’re looking for the proportion. Right? Like people.

Alex 23:24

How many people got advanced.

Danny 23:26

New.

Alex 23:26

Advanced directive.

Jennifer 23:28

We have the composite measure, we have the advanced directive measure, and then we have subgroups as well, which I think was also, I think, an important point. You didn’t ask about it, but for us, it was very important to examine differences for older adults with a diagnosis of dementia. And then we also looked at subgroups with who are 75 years and older. We looked at sex, and we also looked at race. And it was important to us to examine those differences. And we did find that the effect held across those groups, though the effect was disappointingly attenuated, which I think is sort of what’s, to us, an important outcome.

Eric 24:08

Yeah, And I think it was a 6% difference between the group as far as documentation. 12% in intervention, 6% in those. So 6% difference. How many people in the intervention group actually got the facilitation?

Sydney 24:23

So everybody got the outreach, everybody got the mailing with the information. About 5% of people did participate in facilitation conversations with the advance care planning facilitators. And that’s pretty similar to a lot of the respecting choices, other respecting choices studies that are out there.

Eric 24:44

Okay, so they all got some of the intervention. About 5% got the facilitated part of the intervention versus kind of the usual care group. And that led to about a 6% absolute difference in advanced care planning documentation. Did that result in decreased burdensome treatment at the end of life?

Sydney 25:06

All right, so I think I’m up for answering your question.

Danny 25:09

Yes, you are.

Sydney 25:10

Yes. Okay, so we found that again, this is intent to treat in the practices, that the intervention practices actually had higher rates of potentially burdensome end of life care than the control practices.

Eric 25:31

So in that I’m just going to read the numbers. I’m seeing 28.8% in those decedents who got the intervention versus 20.9% in the control practices. So kind of about the same magnitude. That’s really interesting. So advanced care planning documentation increased, which potentially resulted in increase in burdensome treatment at the end of life. Did it matter if you had dementia or if you had. If any other demographics changed that it.

Sydney 26:10

Did not and again, so we had a great editor gem, internal medicine, who spent a lot of time helping us with all the details of the published article that you see. And it’s pretty clear that again, the numbers of uploaded advanced directives are small. The number of facilitated ACP conversations were small. And we also published a qualitative paper where we spent a good bit of time talking to people who were participants in their intervention about their experiences. And it’s pretty clear this was a clinic level effect that with the small number of people who had new advanced directives uploaded and the small number of people who had conversations that, that did not account for the changes that we saw in potential burdensome end to life care.

Eric 27:05

Yeah, okay, go ahead, Danny.

Danny 27:07

I was just gonna say just one extra piece that I think is worth mentioning in this is that, you know, we saw the strong effect in the advanced directive up uploads, but for our potentially burdensome, we were looking at the clinic level. So we weren’t, we weren’t specifically looking at only the people. And like, to Sydney’s point, these, these populations were small. The people who actually did upload a document or who did have a conversation. So I think it’s important to note that like, this is at a clinic level, there’s probably a lot of variation beyond clinics.

But it also makes it very hard because this was so pragmatic, it made it very hard for us to understand the mechanisms of why we were seeing what we’re seeing. I mean, I think this is a really rich thing to look into, like, why did we see this? But I think it’s also difficult from the data that we had and how pragmatic this was to understand exactly why we’re seeing that effect.

Eric 27:57

So, Jasmine, you were tasked with writing the editorial for this, which we’ll have show notes to, we’ll have a link to the article. When you first saw these results, were you surprised or did it, you think, oh, yeah, that makes sense?

Jasmine 28:11

Yeah, I was very surprised by the results that you showed because I was expecting to see the opposite effect. But I guess one of the points that I brought up in my commentary is that, and you all brought up an important point is it is a pragmatic trial. But the way that I described it is it’s possible that the advance care process or the documentation actually aligns with those instances of burdensome care that actually reflected like what patients actually wanted in terms of their goals, their preferences. And so I think this actually kind of suggests that individuals actually received the care that they wanted, even though it’s not what we would think that they would want, but it’s possible that their goals were met in terms of the care that they received. And I know, I’m curious.

Eric 29:02

So what I’m hearing potentially is that while it’s labeled potentially burdensome care, maybe it should be labeled gold the lion care. Potentially.

Jasmine 29:11

Yeah. I mean, we don’t know. I mean, it’s a pragmatic trial, so. But it’s possible.

Eric 29:16

Yeah. Thoughts from the rest of the group on that, Danny?

Danny 29:19

Yeah, no, I was just going to say this is a, this is a conversation I’ve had with a lot of colleagues at different conferences and things like that. And one thing that would be awesome to do but in the current, like, way that this is done, it’s almost impossible, is like, you know, examining goal concordant care for people who died. And the issue with that is that especially the way that like the advanced directive is usually stored in the ehr, I mean, among a multitude of issues that we had a, you know, untangle. But at best it’s an uploaded PDF document. So if you want to like examine did the care match the thing, you got to go in yourself.

And then when you start to get to these huge numbers that we’re dealing with in some of these cases, like, like the idea of doing that is really hard to piece out. So I don’t think, and I could be wrong, but I think doing this at a scale, at a huge scale for people who died and seeing how their care was aligned with their wishes based on the actual document, I think it’s a really cool idea. Maybe with the advent of large language learning models or AI or something, it would be more possible. But yeah, as it was, it’s something we thought of, but it’s just almost impossible to do.

Eric 30:22

Well, it was. Interesting thing is 1,500 deaths in both groups. I don’t know how many of those actually had an advance directive in file, but it’d be interesting to know what was written in that VATS directive. And again, I think it’s hard even when we think about advanced care planning because like we talked about the definition, it’s a process and this is just a document of a snapshot of that process.

Danny 30:50

Yeah, I actually have that number if you want it. Oh, sorry, go ahead.

Eric 30:53

Yeah, go ahead, Danny. What’s the number?

Danny 30:56

Well, it’s not, it’s not the hard and fast number. There’s some, you know, tweaking that would be done, but I have the number. So we had roughly 3,000 people die and during that time. And this is, this is regardless, this is across everything, control, intervention, everything. About 550 had an advanced directive uploaded to the EHR, importantly at least six months prior to their death. So that’s just a raw number.

Sydney 31:20

Yeah, well, I was just going to say and again, our great editors really asked us about this as well and the numbers are really small. So the numbers who had an advance directive uploaded and died with a serious illness, it’s just really small numbers to look at. So I think the bigger question really is what maybe happened in the clinics or for the care of people overall during this time? Could there possibly have been something that happened as part of the pragmatic clinical trial and very complex difference between health systems, clinics, all of that that led to this clinic level finding.

Eric 32:01

And Jennifer, your thoughts?

Jennifer 32:03

Well, I was just going to pile on that we are now we’re in a no cost extension and in this time period we’re leading a number of papers that are focused on really trying to unpack a little bit better some of the implementation differences clinics and really trying to understand especially the connection between advanced care planning, advanced directives and for those who died, receipt of potentially burdensome care at end of life to try to better understand some of the findings that we, you know, served in our main paper.

Eric 32:36

So Jasmine, let me ask you this is that we just did a podcast with Yale Shanker about a study she did on respecting choices versus prepare for your career that is yet to be published but was presented at the AHPM annual meeting. And their outcome was whether or not their engagement scores with advanced care planning, it wasn’t. Their primary outcome wasn’t documentation or potentially burdensome interventions. What outcome should we be looking at when it comes to advanced care planning studies?

Jasmine 33:11

There are different outcomes, but I think something that I think is lacking, at least in this study and I know why it’s lacking. But you know, sort of like looking at the preparedness of the decision maker, you know, whether or not they felt ready to make those decisions in the moment. And I think another big aspect and wait, wait.

Eric 33:29

So when you’re saying preparedness is, you’re not saying preparedness, the complete advanced directive, you’re saying when the time came to make a decision around a serious illness, like should I intubate or not, are they prepared to make that decision?

Jasmine 33:44

Yes, that’s what I’m saying. Yeah. And then the other, I think another outcome which I think is also important is, you know, sort of this psychological impact that sort of making these types of decisions has on a family Member caregiver, you know, and these outcomes include things like depression, post traumatic stress, complicated grief. You know, all of these things I think are. Are important because, you know, it’s important to document, but I think it’s also important the impact that the position that we put caregivers in to make these, you know, decisions.

Eric 34:18

So I’m hearing and going back to Jennifer, how important the caregiver is in all of this and getting caregiver outcomes and bereaved patients. So that population of patients that were bereaved, what were their PTSD symptoms, how prepared were they to make these decisions? Is that possible at all in this study or is the pragmatic design it’s just not going to happen?

Jennifer 34:40

Yeah. The challenge of the pragmatic trials is the necessity of relying on data collected in routine care. We originally did propose a subset of caregiver interviews, but just. It wasn’t, it wasn’t possible. And part of the focus of the intervention was on trying to engage care partners brought through being registered for the patient portal. That’s a whole other conversation that’s very challenging. Uptake of shared portal access, where a patient sort of confers the ability for a care partner to have their own identity credentials to access the portal, is a way that could be used for collection of caregiver reported outcomes, but has been very difficult to execute in routine care.

I will say that we are wrapping up a sister study of advanced care planning that was an efficacy study where we enrolled older adults with cognitive impairment and their care partners and are following them through 24 months and bereavement. And we are collecting a whole host of care partner reported measures, the ones that Jasmine just listed, so we will be able to get some insight on this, but it was not possible in the design of this particular study. Sharing choices.

Alex 36:05

Okay, can I give my thoughts on the bigger picture here?

Eric 36:10

Yeah.

Alex 36:10

What’s the big picture here, Alex, Everybody, thoughts? All right, here are my reflections. I’m interested in what your reflections are. You’re probably aware of the big controversy about the worth value of investing in advanced care planning and, and advanced care planning research. I see everybody’s nodding their heads and we’ve done several podcasts about this and I’m sure Sean Morrison, I’ll speak for him. All right, Sean, sorry, I’m speaking for you. Probably like, oh, see, I told you, right?

Eric 36:38

Advanced care planning doesn’t work. You can increase documentation and it worsens burdensome interventions.

Alex 36:44

Right. And so that’s one perspective. And then I think the middle author on that paper was Diane Meyer. Hi, Diane. Hope you’re listening. I remember seeing a video of Diane in a congressional hearing and somebody said, what is palliative care? And she said, palliative care is matching treatment to patients goals. And then this congressperson turns to her and says, well, what if your goal is to live as long as possible, even if it means being in the icu? And then Diane said, this is paraphrasing. Then they go to the icu. But you know that you’ve had that conversation. So I think that’s a part of it too. And one piece that seems to me to be potentially missing from the respecting.

I actually don’t know, maybe you could tell me if it’s part of respecting choices is that my goals will differ if I have like 10 years to live versus 2 years to live. Right. And so if there’s a conversation about preferences for CPR that is missing that key piece that should come first about prognostic awareness and discussion, then it might lead to goals that are associated with like, you know, hey, if I’m 10 years, you’re the sort of things I want, you know, if I’m going to be fully functional for as long as possible. Absolutely. You know, intubate me, bring me back those sorts of things. I’m interested. What, you know, how does that ring to you? What do you think? Is that fair? Is that unfair? Danny, I see you, you’re ready to go.

Danny 38:06

What do you think I’m ready ish. To go? I mean, I’m of the mind that like, knowledge is power. And I think these conversations, and I mean that in a way that these conversations are designed to not just be had in isolation between a primary care provider and a patient. The idea we tried to push this as much as possible is that you’re informing the people around you, the people who might be making those decisions. And I just, I think, you know, in terms of advanced complaining, like having those conversations early, like there’s a timing element to this as well. You know, we talk about there’d be a difference between having a person who’s 65 and relatively healthy having these conversations versus someone like in our study who has a serious illness who, you know, has probably had conversations about prognosis and is able to, you know, kind of say what they want and the respecting choices to cut to, it does sort of try to meet people where they live.

And so I’m actually looking at it now. I pulled up the conversation guide while we’ve been talking and it very much has things like, you know, tell Me where you’re at. Like do you have any experiences with being seriously ill or people that, you know, becoming serious ill? And then it moves into like explore what living well is. Like, what is living well for you? Like what is a good day, you know, a healthy day? What would happen on that day? And you know, what does it mean to you to have those days? And it’s all trying to get people to contextualize this thing so to get towards the bigger topic, you know, and this, the controversy, I guess, and this is just my opinion. It’s, it’s, it’s a small one.

But you know, I just think that there is nothing wrong with having these conversations, often making sure that they’re readdressed and just making sure that the people that are involved in your life know these things. Because I think the issues come up when there’s no one to speak for you. And there’s probably, there’s, I know there’s a lot of complexity under that, but that’s sort of my, my initial reaction.

Eric 39:47

Sydney, any other thoughts? Oh, go ahead, Jasmine.

Jasmine 39:50

All I was going to say is that I agree with Danny and I think it’s key to remind people to just revisit their plans regularly because what you want to avoid is not being prepared in high stress situations.

Eric 40:02

All right, I’m going to ask each of you, when you think about the implications of this study, what are they? Because this is not a cost free thing, is that you have to get facilitators, you have to do this. It does increase advanced care planning documentation, but for a healthcare system it actually increases burdensome treatment, potentially burdensome treatment, maybe goal line care, but, but potentially cost too. Is this a study that is negative, it doesn’t work or actually may make things worse. Is this something that we should implement? How do you think about this? I’m going to turn to Jennifer, you first. As the first author. What’s the implication?

Jennifer 40:41

Well, I think that there are a number of really important implications in terms of thinking about the way we design and fund studies. And as I mentioned, this study was proposed in 2018 before COVID The world is vastly different today than it was in 2018. I have increasingly become very interested in the idea of doing research quickly, sort of rapid cycle testing, failing fast. And so I think that the availability of technology is increasingly making it more possible to think about designing studies where we have real time data collection and can pivot quickly.

Eric 41:26

So let me ask you this then, Jennifer. If you are the health care system boss and you had decided should I implement this or not? Would you say we just don’t have the studies to show yet that this is effective?

Jennifer 41:37

I would say that on this particular study, I would say we don’t have enough. Yes, on this particular study. But I think that we went into this really wanting to focus on people with dementia. And I think that what we did learn is that normalizing important communication processes for everyone doesn’t necessarily meet the needs of the people who are the hardest to find and who need the most support.

Eric 42:05

Great. Danny, what do you think the implications are?

Danny 42:09

Yeah, I think it’s two pronged. I mean, this is sort of, you know, behind the scenes a little bit. But what was very interesting is that one of our organizational partners, when we finished this actually. Well, I’d say both actually, but one that surprised us actually adopted the ACP facilitator model and they adopted just in sort of enthusiasm and what was happening the time that it saved providers to have the conversations. Sustainability was another question, but there was enthusiasm for it and for the providers that we were able to engage.

Again, there was a lot of complexity around this with the remote nature of it. They really enjoyed it. They liked that these conversations were happening and that they could kind of pick up the baton later, you know, during another kind of visit. But in terms of implications, I think for me, the thing that stayed with me is that it’s cool that we had such a strong effect on one and it’s puzzling that we didn’t on the other. And as Jennifer sort of alluded to, you know, we’re doing a little bit of work, work now in our no cost extension time to kind of investigate this stuff. So for me, it’s always going to be a piece of like how. And it goes back to the design that Jennifer is talking about. How, how can we either design in the future or what with the data that we have, how can we look for like markers of why we’re seeing these things?

Because they are what they are. But I don’t know that it’s concrete enough. Even if we found a positive effect, I think we’d have to be very tentative about how we presented the implications. And so, you know, you have to dig into what it is, the goal concordance of it, the complexity of these interactions happening in primary care, all of that. So, you know, I guess it’s sort of a little bit of a teaser for work that we’re doing, especially a paper that I’m leading that Jennifer was talking about earlier that that that’s kind of trying to dig into this a little bit more with nothing, you know, just to try and see, try to understand. So.

Eric 43:51

Okay, I gotta go because we’re running close to the answer. I’m gonna go to Sydney now. Sydney, if, if you had a limited budget, would you spend your palliative care budget on this intervention, given that it increased advanced care planning documentation, but it worsened potentially burdensome interventions at the end of life?

Sydney 44:11

Yeah. So there’s two points. It’s really important that we bring these conversations up early, that we make it available for people when people are healthy. But it’s also incredibly important that we have of services, supports to take care of people when they have serious illness, to care for them, to do all the other things that will help to avoid them from having these things done and to have conversations with them how they want. So it’s really important to do both.

Eric 44:43

So you would, you would this particular intervention with these results, it’s important to have it.

Sydney 44:50

This is what I do as a primary care and palliative care physician. I think it’s important to do both.

Eric 44:54

Yeah.

Sydney 44:55

That we offer both aspects to people.

Eric 44:58

All right, Jasmine.

Jasmine 45:00

Yeah. You know, even though you didn’t find the findings that you were expecting, I still think it’s important to have these types of interventions. I think expanding it to non English speaking populations would have been great to include. But maybe that’s for a future study. But. But yeah, that’s all I say.

Eric 45:19

Wonderful. Well, we’re at the end of the hour. I want to thank all of you for being on. But Alex, can we get…what’s the title of the song, Jasmine? Laka Laka?

Alex

(singing)

Eric 45:49

Jennifer, Sydney, Danny, Jasmine, thank you for being on the GeriPal podcast.

Danny 45:53

Thank you very much.

Jasmine 45:55

Thank you.

Sydney 45:56

Thank you.

Eric 45:57

Thanks. This was fun and we are looking forward to all of those follow up studies to help answer some of these questions. And with that, thank you very much. And thank you to all of our listeners for your continued support.

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