Pragmatic Trial to Increase Advance Care Planning: Anne Walling, Neil Wenger, & Rebecca Sudore

Eric 01:09

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 01:12

This is Alex Smith.

Eric 01:13

And Alex, we’re going to be talking about one of our favorite subjects on GeriPal, advance care planning, how to improve it. Who do we have as our guest?

Alex 01:23

We are delighted to welcome Anne Walling, who is a palliative care physician researcher at UCLA. Anne, welcome to the GeriPal Podcast.

Anne 01:32

Thank you.

Alex 01:33

And we’re delighted to welcome a giant researcher in the field, Neil Wenger, who’s a general internist and researcher at UCLA. Neil, welcome to the GeriPal Podcast.

Neil 01:43

Glad to be here.

Alex 01:44

And we’re delighted to welcome back frequent guests about these advanced care planning topics. Rebecca Sudore, who’s a geriatrician, palliative care doc and researcher at UCSF. Rebecca, welcome back to GeriPal.

Rebecca 01:56

Good to be back. Thank you.

Eric 01:59

So I’m excited to talk about this again. One of our favorite subjects, advance care planning, thinking about ways we can increase advanced care planning. But before we jump into this topic, Anne, do you have a song request for Alex?

Anne 02:10

I do, and I have a reason behind it. So my favorite quote by Donna Bedian, who’s known as the father of healthcare, quality is the secret of quality is love. And so we chose all you need is love by the Beatles.

Neil 02:24

Great.

Alex 02:25

Good choice. I’m shocked we haven’t done this one before. I played this one for Diane at some meeting, but Diane Meyer. But I guess we hadn’t done it for GeriPal. So delighted that you requested it. Thank you.

Alex 02:42

(singing)

Eric 03:32

That was wonderful. Anne, what did he mean by that quote?

Anne 03:36

Well, I think that if you really care, you can look back and improve things. And I think that that’s sort of like what I based my whole career on is like, really wanting to make the world a better place.

Eric 03:47

And why. Why did you focus on one of those improvements, improving advanced care planning documentation?

Anne 03:54

Well, I think that. I mean, honestly, my personal passion about this comes from personal experience. So before I entered medical school, my mom had had a severe brain injury after a horseback riding accident. And I feel like the. If the communication had been improved, like, our experience would have been a lot better. And so coming into this as a clinician and interacting with families all the time, I just really am passionate about improving the way that we communicate with people. And I think advanced care planning is a key piece of that.

Neil 04:25

Yeah.

Eric 04:26

Rebecca, we’ve had you on the podcast. We’ve asked you this. Neil, I’ve never asked you this question, like, why is this important to you? What’s the love aspect here for you about this?

Neil 04:37

You know, I think when Donna Median talks about love being the basis of quality measurement and the provision of high quality medical care, it has to do with where your passion lies. If what you’re trying to do is improve the care that the patient in front of you gets, and that is your main target. That’s when you develop the right measures. That’s when you carry out the right processes. And that’s really what advance care planning is all about, is trying to figure out what this patient wants both now and. And what they’re gonna want in the future when they can’t talk to us anymore and how we figure out to keep that as the target during the trajectory of care.

Alex 05:29

Yeah.

Eric 05:30

And Rebecca, I know we’ve had you on this podcast. We’ve had some, you know, podcasts around the role advanced care planning. I wonder, when Neil says the love is improving the care that the patient gets, what do we know about advanced care planning? Like, does it Improve the care that patients get.

Rebecca 05:49

The complicated question, I think some studies show yes and some studies, I would say older studies show no. I think one of the things that’s really important when you look at the literature is how were those studies done? There’s a really great study that was actually done at the VA where, because they have that whole system, as you know, there’s the life sustaining treatment orders and when we know what patients want. So it’s not just did you do advanced care planning or not and what are the outcomes, but if you did advance care planning and we actually know what patient’s wishes are, then you can match did the patient’s wishes that they stated, did it match to what they got?

And again, at this VA study, again, when you actually do that work to go in and look to see, does this match with what patients want? It absolutely does. So for people who want comfort care, they get comfort care. And for those people, there are decreased utilization and increased, you know, patient. What is it? The Bereaved Family survey scores increase. So I think yes, experientially, advance care planning does definitely work.

And yes, if you do your studies right, actually the outcomes show that there is a lot of benefit. I would say too, the one thing that has been shown across the board regardless of how you do this study, is that advance care planning decreases ptsd, complicated grief for patients as well as their families that are often the ones living on after this. So yes, we think there’s a lot of benefit, even though there’s some mixed results in the lrg.

Neil 07:29

But Eric, your question is a really good one because it’s been hard to evaluate aspects like utilization.

Rebecca 07:39

Yeah.

Neil 07:40

And we all know that Gold Concordin care is currently a holy grail. But if you’re a general internist like me, maybe it’s not quite as apparent to the palliative care doctors that are seeing patients much further along in their trajectory. But it’s very apparent to me where a conversation about one’s goals and where one is hoping medical care will take them helps to guide over the next decade the care that they get.

Yes, into the time when they can’t make their own decisions, but also helps to navigate the interactions with specialists and highly technical care to attempt to always be achieving what patients want. So it’s sort of a funny question. We need to answer it from a research perspective, but from a clinical perspective, it’s just so obvious to me.

Eric 08:35

Well, Neil, can I ask like from a primary care perspective? Because I can imagine, like I agree. Having those conversations and Having that longitudinal relationship with somebody over 10 years, like, to me that just makes sense. Like, of course it would. But, but the person in the hospital would need to know what that conversation was. You, as a primary care provider would need to be in contact and still be their primary care provider after 10 years. And somewhere in the EHR, hopefully you’re sharing that EHR with the hospital that admits them or with the oncologist that’s considering the chemotherapy. It has to be documented and findable. Like, there’s so many potential obstacles that may make even the best conversations kind of disappear.

Neil 09:18

And that’s why we did this study.

Anne 09:20

Yeah, yeah, it’s exactly why you answered, you answered the question for us.

Eric 09:25

So, so tell me, why did you, like, what, what, what were you trying to achieve here? So let, I’m going to let everybody know. So this is a study that was published in General Medicine, animals internal medicine, December 2025. Interventions to improve advanced care planning. Documentation in the EHR, a cluster randomized control trial. We’ll have a link to it on our show. Notes. Anne, tell us, why did you do this?

Anne 09:52

Well, you know, at the time that we began this study, where the research was, is the need was for real world implementation of advanced care planning. And we were really interested in health system spaced, really creating an infrastructure to support advanced care planning, understanding what the barriers are at the point of care, and to create an infrastructure to support advanced care planning. And we wanted to test the different approaches to do that.

Rebecca 10:21

I think I’ll also say too, that like, you know, in efficacy trials, these different things may have worked. But I think one of the other things that we were very aware of is that primary care clinicians are completely overworked and don’t have time to do this. And if you don’t have something that’s actually baked into the workflow, you know, it’s just not going to stick. And so I think one of the things I hope that we get to talk about are like the very large advisory group that we had that included clinicians and patients and things, because again, if it doesn’t work and if it, if things aren’t easy to adopt, then they just go by the wayside.

Eric 11:04

Yeah. So let’s talk about. Go ahead, Anne.

Anne 11:07

Oh, I’ll just add. And we wrote a whole separate paper about the implementation strategies here. But that engagement piece is really key and it’s engagement with all sorts of different stakeholders from the leadership, our health systems, as well as across the country, but also patients and caregivers. We had a community advisory group that we met with that helped with everything from messaging to implementation. And so I think that that took a lot of time and attention, but I think was really key to the success of implementation.

Eric 11:39

So let me just get this straight for our listeners. So you did this study. It’s a pragmatic study. You’re trying to see this, how it works in real life. You got multiple different sites, three University of California healthcare systems, which are somewhat similar, but somewhat different, and a lot of different primary care clinics. Right. That were included in this.

Neil 11:59

50 different clinics.

Eric 12:00

50 different clinics with a lot of different providers. Just so our listeners get a sense, like, how did you design the intervention?

Neil 12:09

You know, it was really based on thinking about where in an entire health system you can find the points where you’re likely to be able to change care. And can you create an infrastructure so you identify the right patients, you figure out how to get to them at the right time, and you give little incentives or tweaks to get the clinician and the patient to interact such that advance care planning can occur. Like nudges in some ways. Nudges. Correct. Right.

But that means, you know, if you’re trying to do a whole healthcare system, it’s not like doing a clinical trial where you have people who are signing up for something and they know that they’re in it. This looks at every single primary care patient that has a serious illness across these three systems. And how are you going to identify within the system who are the ones who are seriously ill? How are you going to identify the ones that already have documentation within the system for advanced care planning?

Eric 13:22

So let me ask you this as a primary care provider, Neil, like, how do you think about that for the importance of advanced care planning? Because I can imagine it as a spectrum. You have your very healthy younger adult. How important is it to do advanced care planning for them versus, you know, patient with a serious illness? Maybe they’ve been hospitalized. Do you think the importance for advanced care planning spans that whole spectrum, or is it just you just focused on one side of that spectrum right here?

Neil 13:49

Right. I mean, it does, but it does in different ways. And this study only focused on the sicker patient primary care group in part because of what Anne and Rebecca just said. That’s where the stakeholders wanted us to focus. Yeah.

Eric 14:08

Rebecca, I’m going to ask you the kind of the same questions. Your thoughts on that? Feeling the same. Like, is this, I guess I’m trying to ask is like, is the importance of this very where they are on the spectrum or like In Anne’s case, too, she was talking about this after, you know, a family member with a traumatic injury.

Rebecca 14:28

Yeah. Well, this allows me to. To plug our JAGS article for Alex. We actually published a paper in JAGS about this very thing. We called it kind of the Care Umbrella, sort of the evolution of advanced care planning, where, you know, we do see that advanced care planning is important for people at all stages of their life. When we think about people that go off to college, they’re listing an emergency contact and that person who might be their surrogate decision maker should something happen. And then as people sort of go along the, you know, their life trajectory, if they get a serious illness or at the end of life, you might be having different tailored conversations sort of, you know, across.

Across time. So I do think that it’s pertinent, and I do think that we can tailor things, I think, for this study, as Neil was saying, health like one of the big things. We published a paper specifically about the implementation of this study. And I’ll just say there were 29 things on that list of things that you have to do to even launch a study. And the biggest one was align with what your. Your healthcare leadership wants. And as Neil said, at least to get started, the healthcare leadership wanted us to focus on people with serious illness. We’ll talk to you later about how these things have been implemented at our.

Eric 15:48

Can I ask, why was that? Why do you think that was the case?

Rebecca 15:52

Like, highest utilization, the. Like, they were frequenting the hospital more often and was worried that there was more imminent need, I think, for knowing what people’s wishes were.

Eric 16:05

And then, Anne, for this study, you just focused on seriously ill primary care patients. How is that defined?

Anne 16:12

So that’s a really good question. And I think this is a really innovative part of the study, is that we essentially created an electronic health record phenotype for serious illness. And what we wanted to do was consistently, and using a valid approach, identify the same population across three health systems. And we did this using structured data. So you’ll talk about people talking about unstructured data and structured data. Structured data is the data that’s easily accessible on the back end of epic. And so at the time, there was a California statewide effort that had published some ICD codes.

So that’s where we started. But we soon found that ICD codes alone does not capture consistently a serious ill population. There’d be someone who had a COPD code, but they just had mild asthma. And so what we did is we did iterative review. So we created A reference standard of patients that met our criteria for serious illness, which was advanced cancer, advanced copd, advanced renal disease, or end stage renal disease, end stage liver disease, als, and I think vulnerable elders with serious illness. I think I listed everything. Neil.

Eric 17:24

Heart failure.

Anne 17:25

Heart failure, too. Yeah. And so what we did was we created a reference standard and then looked at all the structured data to see what data elements we can accurately identify. So just an example of how this works is that at UCLA we had PFTs, pulmonary function tests in a structured data element, but we did not have that at UC Irvine. So what we did is we use it as an internal gold standard to kind of see what other structured data elements would find patients with worse scores on their pulmonary function tests. And so we found that specific encounters or visits. And so we used that kind of approach to basically create a population that met our serious illness definition.

Alex 18:11

Anne, can I try and restate that? Many of our listeners may not be researchers. They may not be familiar with what, like, unstructured and structured data fields are. So what I’m hearing is that you created a list of conditions that qualified as serious illness and severe illness within those conditions, and then you looked in the medical records across these primary care clinics to see what data has been captured routinely.

That’s like the structured part that you don’t actually have to like, go through and like read the note or use natural language processing in order to figure out, because this is like stuff that’s captured and it’s like filed away in some University of California system that you can access across sites. And even if something was missing that seemed to be important, you found other things that sort of represented or were close to representing what that serious condition was so that you could capture those folks with serious illness. Is that a fair.

Anne 19:05

Exactly. And the key step is we finally validated the final algorithm across all three sites that had 98% positive predictive value for identifying the group that we were hoping to identify.

Eric 19:18

What was the gold standard in that compared to like a research?

Anne 19:23

Yeah. So the. Neil, do you. The advanced care planning definition or the priority advanced care planning priority definition?

Neil 19:31

Yeah. So this is not a group that needs palliative care today. This is a group that we wanted to define that needs advanced care planning today, and that’s that they have a life limited life limiting condition or a function or cognition limiting condition. They may not die for a decade, but they might lose the ability to make decisions in the next couple years, or they have very serious symptoms that are driving increased utilization or increased utilization, are making their symptoms worse. And that, that was the definition that we used to find an expanded group of people where a primary care doctor, if they got pinged to, to do advanced care planning, would say, yeah, this is a patient who needs it. It had both face validity and validity concerning diagnosis.

Alex 20:29

And this is really important work. I just want to editorialize here for a second. There have been a lot of people trying to identify the denominator, you know, who are the people with serious illness? And the work you’ve done here is terrific at using EHR and structured data fields in order to identify a population of people with serious illness. You know, I know Amy Kelly did a lot of pioneering work in this area a while back, and you’ve iterated on it and improved it. And so this is, and one thing I’d note that’s interesting is that you didn’t create a model that like predicted how long people had to live. This isn’t a prognosis based algorithm. Any, any thoughts about how, how you made that decision to go with serious illnesses rather than prognosis?

Neil 21:12

So a, a pro, a something that is really looking for people that are going to die in the very near future. This is probably not the right intervention for them. We ought to be having palliative care doctors see them. We ought to be doing much more intensive kinds of things. This is a primary care intervention across an entire health system to provide a foundation for advanced care planning that all kinds of other things can be built on top of.

Eric 21:41

Is this replicable? Like if, if a hospital and Bozeman wants to do this, can they just lift and put this into their epic, or is this something that they have to iterate and figure out themselves?

Rebecca 21:57

When you say it, do you mean the algorithm?

Eric 22:00

The algorithm, like finding the serious illness population, the thing that you did here?

Rebecca 22:06

Yeah, it’s actually published. The codes are published. And Anne, is it okay to say that people could reach out to you if they’re interested? Yeah.

Anne 22:17

Yes. I think that we’ve shared the code with health systems and, you know, I think that it would be great if as a field, we work together to create these EHR phenotypes and learn from each other and then they can improve over time.

Alex 22:33

Yeah. So other health systems I’m aware of are creating algorithms, trying to figure out who are the people with serious illness. And many of them are sort of prognosis based and they’re more designed around, like, identifying hospitalized patients who might benefit from palliative care consultants. Yours is much further upstream from that and it’s really interesting to me that health systems have already contacted you with interest in obtaining this algorithm. Do you have any concerns about how this might be used in ways that are unforeseen, unexpected, and might be. Might give you a bad taste in your mouth?

Eric 23:10

Is that a leading question, Alex?

Anne 23:13

I’m not concerned that. I think that using the structured data is defining. It’s very transparent of what we’re defining, and so it really allows an opportunity to design interventions to improve that population. I think I have a little bit more. I wouldn’t say concern, but I would want to be more thoughtful about models that. Where we didn’t know what was in.

Eric 23:42

Are you suggesting AI when you say that?

Anne 23:45

Well, it depends on the model. And I think that there’s a lot of positive things about AI, but I think we have to be really thoughtful about how models are validated and how they’re used.

Neil 23:55

Yeah, yeah. I think it is fair to say that it’s fully implemented here at ucla. And one of the things we wanted to be sure is that it was available to clinicians. And a lot of different groups have. Are using this as part of their targeting for patients for increased social work support, a whole variety of kinds of things. But we wanted to make sure that it didn’t appear, say, on the patient’s portals, a banner that says, beware, Seriously ill, Don’t buy radial tires, that it’s used appropriately.

Rebecca 24:31

And I’ll say as well, at ucsf, it was important when we launched the study, the study was done among people with serious illness and population. Health, with a lot of foresight, was like, you know, we also actually want to do this for people 65 years of age and older. So in the clinics at ucsf, we were doing both. And I think when health systems are thinking about this, like, there are some messages, as Neil was saying, could go out to sort of a population of patients. But when you’re thinking, I have limited resources, I have maybe a healthcare navigator only for a certain number of patients. Who am I going to target those additional resources to on top of this foundation that we’ve built, that kind of allows health systems to think about it in that way, too.

Eric 25:18

So maybe we can talk about that because you mentioned something called the navigator. What did you actually do in this study? What was the intervention?

Anne 25:27

All right, so there’s three arms.

Alex 25:29

Okay.

Anne 25:29

So the intention was to send messages to patients in advance of their primary care visits, like. Like Neil had mentioned, to prompt conversation during the visit. And so there were. Clinics were randomized to three different groups. One the messages included information about advance directives. The second arm included all the same information in the first arm, but also included information about the prepare for your care website, which Rebecca could talk more about. And then the third part included non clinician healthcare navigator, which did outreach both to the patient as well as to the clinicians. And the clinicians had received training too, at the initiation before their clinics went live.

Eric 26:19

Okay, so group one gets a email or a physical letter with an advance directive.

Rebecca 26:24

Yeah. So and that’s a key piece because you can imagine if you’re sending out a population message that people are getting in the electronic health record, you have to be very careful about how you message, why you want that person to do advanced care planning. And I think at the end of the day we’ve like, I think we tallied. There was like over a hundred different types of stakeholders had their fingers in trying to create this language so that it was, it would be acceptable to patients in primary care.

Eric 26:55

Do you remember roughly what did it, how did it start off?

Rebecca 26:59

Yeah, I think that we like, you know, very similar to prepare, to be frankly honest, that we want people to have a voice in their healthcare and we want to know what’s important to them.

Alex 27:07

Yeah.

Anne 27:08

You know, very positive framing of stickers too.

Alex 27:13

Oh yeah. What does that say?

Anne 27:15

Have a voice in your care.

Alex 27:16

Nice.

Anne 27:17

So, yeah, the messages were sent through the patient portal, but also through mail. And also through mail they.

Eric 27:24

So they get up through the patient portal, they get in the mail before primary. How soon before primary care visit?

Neil 27:30

3, 3 to 14 days.

Eric 27:32

3 to 14 days. And that’s different. Like that didn’t happen before this intervention. Like the standard of care in your clinics where maybe they get a big packet with advanced directive, if they even get that at all. Mainly just in the hospital when they arrive, they get an advanced directive.

Rebecca 27:49

Exactly. Well, and I will say another paper that we wrote about the implementation, there was a lot of secular trends happening.

Eric 27:59

Yeah.

Rebecca 27:59

It was like during COVID there are like residency programs doing stuff and primary care doing things. And you know, so I, we kept track of all of that, but there was nothing that was standardized and nothing that was linked directly to the upcoming appointment, which is really important. And Neil, maybe you can talk a little bit if you want to, about the batch versus the messages tied to primary care, because I think it’s a really important finding that we found.

Anne 28:31

Yeah. And if you’re interested in all the different secular trends that are very detailed in the implementation paper that was published, I believe that was journal payments and

Eric 28:39

demands so maybe before we get into the results, the difference is we can just finish off the three groups. So one, they got the EHR and the letter number two, they got Prepare for your care. In addition to those things, how did they get prepared for your care, Rebecca? And folks, we have a whole podcast and prepare for your care that you can go to. Rebecca, A one liner. What prepare for your care is.

Rebecca 29:00

Yes. So Prepare for your Care is an easy to use program that includes both easy to read advanced directives focused on values and goals and quality of life, as well as online modules to walk people through. In ARM1, UCI and UCSF got the PREPARE easy to read advance directives and UCLA had created their own easy to read advanced directive similar to prepare. And then the second ARM and it got the PREPARE website.

The ways that people got this Information is that URLs were sent in the electronic health record and prepare pamphlets in advance directives or the UCLA advance directive was mailed out to people as well. And that was people got access to an advanced directive in all arms. And then ARM two also got a pamphlet and information about the website.

Eric 29:55

And can you tell.

Anne 29:56

I think a key thing that’s interesting is that there was a high percentage of patients accessing these messages through the patient portal, even though this was, you know, years, a few years back. So the high.

Eric 30:09

Can you tell how many people actually used PREPARE for your career?

Rebecca 30:12

That was a little bit harder to figure out. I would say that I can’t remember if we published this or not. The data was not great. I’m just going to be honest in saying I think the. Was it the number of people who clicked on the EHR messages was in the 60s or six in the 60s,

Alex 30:31

but I don’t think I couldn’t see anything in the publication about that.

Eric 30:34

Sounds great. Yeah, I thought you were going to say like in the single digits.

Rebecca 30:39

No, and, and actually we were really excited about that because as you know, the use of my chart has just been kind of exponentially increasing. I will say I cannot remember what the numbers were. And again, it was hard for us to consistently get the, the data, you know, and, and when we did work with Yale too on her study, a lot of people don’t click to external websites and I think that’s why we’re trying to figure out what can we give people in the HR and mail it to them. But I think the click rate outside, I’m making this up, but I think it was like somewhere in the 40s to 50% of the people who got that second URL. The other thing I will say is that if you have two URLs in one message, here’s the advanced directive, and here’s to people.

Eric 31:29

It probably decreases both. Yeah, right.

Rebecca 31:31

That’s right.

Anne 31:32

So.

Rebecca 31:32

So I think we. We learn that as well.

Eric 31:34

It’s nudging, right? We have a whole podcast on nudging. More choices leads people to not do anything. Okay, third group. Third group got a navigator dum. Does somebody want to describe what happened there?

Neil 31:46

You know, it’s worth recognizing that this is not your respecting choices navigator, whose job it is to do advanced care planning with a patient. This navigator was really a navigator. Their job was to stimulate the patient to participate in the intervention, to open up the message, if they hadn’t done it, to download the advance directive, if they hadn’t done it, to find their advance directive at home, that they already have to be able to bring it into their doc. And the navigator talked up having a discussion between the patient and the doctor.

Remember, this is just a few days before the visit, so the patient’s sort of primed that I have a visit coming up and I can talk with my doctor about this. The navigator then assessed the readiness of the patient and sent a note to the doctor before the visit that said, hey, your patient is totally defended, refuses to talk about advanced directives at all, or your patient is really ready to have this conversation with you. And even filled out their advance directive or started to fill it out.

Eric 32:55

Were these navigators already embedded in these clinics or did you use new navigators that you put into these various clinics for the study?

Neil 33:04

I think it varied by clinic. I can tell you that at ucla they already had an embedded navigator program. And just as we got started, Covid hit and they said, we can’t use our navigators for your program. Oh, for the first year, our navigators were a rotating set of pregnant nurses who couldn’t be on the wards. They weren’t sure what to do with them, and they became navigators.

Eric 33:27

Wow.

Neil 33:28

We now have here only one, unfortunately, navigator who does this routinely, and they get really good at it.

Anne 33:38

And the one positive aspect is that we really had to standardize the navigator protocol. So we have a 50 page, like navigator protocol that’s completely scalable because we wanted to ensure that this was the same intervention across every single person at our site as a. And also across all the sites. And so you can always find a positive when there’s challenges.

Eric 34:03

All right, did it work? Did any of these three work?

Anne 34:07

They all worked.

Eric 34:09

What did it Show.

Neil 34:10

So we picked a two year period and we picked this before the project began. We figured advance care planning is a longer term project and if you take people with no advance directive at all who were intervened on by the intervention and this is all comers, so this is the full population.

Eric 34:32

And none of them had a pulse, none of them had advanced directive beforehand. Right.

Neil 34:36

Among this group.

Eric 34:37

Among this group.

Neil 34:38

And then in group one and group two, about 13 to 14% ended up with an advanced directive or a POLST in the system. Right. So that’s a huge barrier to get your advanced directive into the system because it means it was not only witnessed or notarized and uploaded the whole bit. But with the navigator, 20% had an

Eric 35:02

advanced directive or pulse documented in the EHR.

Neil 35:06

In the EHR, yeah.

Anne 35:09

And another exciting piece is that we were able to not just measure advanced directive completion, but also conversations. And so we used Charlotta Linville’s clinical regex, which is essentially computer assisted abstraction. So back in the day when I did my dissertation, we would use, we did manual abstraction for the unstructured data. We talked about structured data before, but the unstructured data is basically clinical notes where we write everything. And it would take us two hours per chart to say whether or not someone had a goals of care conversation. But using her software, we were able to take her previously published NLP library, adapt it to our sites using again iterative review and a reference standard and show that we were able to have I believe it’s around 35% goals of care conversations documented during the 24 month period in arms one and two.

And it was about 4 to 5% absolute difference higher in the navigator group. So it’s really, I think that’s a really cool part about the study is not only were we able to get the advanced directives, but also show that this is stimulating conversations. And I’ll say we actually excluded any navigator documentation. So if you count navigator documentation about advance care planning, it’s even higher in that group.

Eric 36:31

All right, I got another question. It sounded like at the beginning the C Suite wanted to look at this because of, you know, serious ill patients utilize a lot of stuff. Did it meet the C Suite’s needs of these are high risk groups, did it change utilization?

Neil 36:48

Well, if you compare group three to the first two groups, group three’s utilization is lower, but once you adjust there is no difference between groups.

Alex 37:01

Yeah. What do you make of that?

Neil 37:03

Yeah, that it’s really hard to measure utilization changes, especially over a relatively short period of time.

Eric 37:12

Two Years.

Rebecca 37:13

And I think, too, Neil, like, we didn’t. We weren’t able to say this person’s goals were for comfort. And so we knew, like, we could match what their goals were with this. It was just, again, all comers and many of those people that might be aligned with their wishes and goals. So just to say that we maybe didn’t meet the C Suites needs, but in terms of what brings us love and why we come here to match, like, the patient’s goals with the care that they’re getting, it may have been aligned with what patients wanted.

Alex 37:48

Okay, this is a tremendous study. Love the pragmatic nature of it. Very practical. Seems like it could be implemented in many health systems. Could I channel the skeptical listener? Yeah, with some pushback here and just see how you respond to it. Like, what are we doing here? We’re measuring an outcome of advanced directive and pulsed completion. Rebecca, I thought we agreed on this prior podcast that those shouldn’t be, like, the primary goal here. Shouldn’t be quality metrics. It shouldn’t be what we measure. It’s what’s measurable and not what we actually care about the most, which is aligning patients, you know, treatment with patient goals.

I know Neil addressed that a little bit, but I think it bears repeating. There’s no control condition here. You started this at the end, you know, the beginning of COVID Of course, more people had advanced directives and advanced impulse over time. And there was this big jump between year one and year two, which is like, probably due to, you know, people getting sicker. Cause these people had serious illness, and sicker people are more likely to complete advanced directives and pulse forms. And then overall, the rates are so low. Like, do we.

Should we really do this? Like, this is a. Seems like a big effort to get, you know, as you say, like, get health systems to buy in, change their systems, and adopt this serious illness identification and get navigators. And all this for such a low outcome rate among seriously ill patients, you’d think would, like, you know, really get involved in this compared to some other studies where they’ve had better success in moving the needle on these outcomes.

Rebecca 39:20

Okay, I got. I have a lot to say, and I’ll try to be succinct so that Neil and Anne can jump in. Stay tuned, because we actually have survey data where we actually. I think it was like a 10% or actually more than that.

Anne 39:35

20%.

Rebecca 39:35

20%.

Anne 39:36

It was a cohort of 1100. Yeah.

Rebecca 39:39

We sent out surveys to all the eligible patients and those people who responded. We were able to get baseline and follow up surveys where we’re actually asking them some of these questions, Alex, that you’re saying it’s not just about forms. So we are asking that. I think the other thing, as Anne said, is that we’re starting to be able to use some of these natural language processing other kinds of things to actually look and do chart review to see what was going on. So stay tuned for that because there’s more information that we’ll have about goals of care and I’m 100% in agreement forms, whatever.

I think what was really exciting to me was that there were increased conversations happening. UCSF uses something called clinically meaningful advanced care planning, which I’ve been trying to sort of normalize, which is like, is there anything on the chart that’s helpful at the bedside? Surrogate designation, goals of care conversations in addition to these forms? So anyway, so stay tuned for that. In terms of sort of like the low, sort of low numbers. Yes, there is a heavy lift to sort of get this into the electronic health record. But I’ll say sort of the benefits of it are that it is a platform that is running in the background.

These platforms have been. So once they get, they get launched, they’re so easy to maintain that they have been adopted at UCSF for all primary care patients over the age of 65 and they’ve been adopted at UCLA as well. So they’re running in the background. They don’t take up primary care providers, time, energy, space. And at all of our sites after this study is done, we still continue to see these numbers increase. So just like getting your message about the flu shot, maybe don’t do it the first year, maybe don’t do it the second year, but then you do it. Or maybe you’re getting this information and then you don’t do advance care planning until you decide something happens, somebody in your family members get sick or you get hospitalized, but you have access to the information to do it. So I think, anyway, can I ask that?

Eric 41:49

Because it seems like for a 15% increase in advanced directive, again, we don’t know if there was a control of placebo, what the number would be. But let’s say there’s, you know, 10% increase in advanced directives. That seems like, hey, if you can create this process that’s just working in the background.

Anne 42:06

Yeah, like, and it actually, like one more thing, like it’s the infrastructure. Like you, you start to build an infrastructure that you can build things on top.

Eric 42:15

But what about the navigator? Because that Is now that’s fte. That is, that’s money that you can. You got to support people to do that. And is that worth the extra 5% difference?

Neil 42:27

Right. You know, that’s a great question. So far, UCLA has said yes, this study ended long ago. The navigator is still doing her job. And the fact is that it has begun to fit into a larger program that now all the navigators turn to this advanced care planning navigator when they have questions, when they need things moved along. It’s a systems level intervention, really. And as both Rebecca and Anne said, you now have a mechanism that’s running in the background that you can tweak. Maybe you want advanced directives to be reviewed at a shorter or longer interval. Maybe you’re not happy with certain kinds of documents.

Maybe you want to include whether there’s a goals of care note in order to identify people that ought to have conversations. Maybe you want to make a stronger link, nudge to your doctor. That’s possible. Right at our place, we’re now doing lunch and advanced care planning where we bring in the lunch and the clinic gets together with us. And they’re well aware that they’re getting these messages on the patients. And maybe we practice a little bit about how do you have that conversation if you only have three minutes versus 30 seconds versus 15 minutes?

Eric 43:50

So I got a question. Oh, go ahead, Anne.

Anne 43:52

Oh, I just want to give an example of like a practical, like thing that you can build on top. So Neil did a lot of like really cool work, led a lot of cool work working with hims, for example, because now patients can upload their advanced directive directly into epic. So you can imagine how you can then include that in the message. And then we just published a paper on how the process of working with them so that that happens in a way that makes it easier for patients, makes it easier for doctors, and increases advanced care planning.

Eric 44:26

I got a question. We’re coming close to the top of the hour. I want to go back to the original quote because what Love meant was really improving the care that the patient gets. I want to start off with you, Neil. You got a clinic, right, at ucla a lot you’re seeing these patients, they’re getting this. Do you think this program is improving the care of seriously ill patients that you’re seeing?

Neil 44:50

I think it is having a small and measurable effect.

Eric 44:55

Yeah. Let me ask you this. Is there also a component, like if this stimulates more discussions around goals of care, not just filling out advanced directive, is there a place that you can put that to that’s not hidden inside like some note that we’re going to need AI to try to find out where it is in a chart.

Neil 45:13

Yeah, for sure. And everyone knows to go there. And five years ago, before we started this, people were rarely looking in the goals of care section when they admitted a new patient to the hospital middle of the night. Now it’s a go to place. And in the olden days, the hospitalist would tell me, I’m not going to bring in the primary care doc because if I do look in the goals of care section, it’s blank, there’s nothing there. So I figure they’ve never had any conversation. What do I need some meddling in my care for? Not the case anymore.

Eric 45:51

Oh, that’s wonderful.

Neil 45:52

See what conversation has happened. Oh, I can pick up from there. Or wow. I really better be careful in how I raise this.

Eric 46:01

Rebecca, at ucsf, do you think that this is improving the care of the patients with serious illness?

Rebecca 46:06

I do. And just to say, like this platform, we’ve been able to expand into surgical populations and things like that. And we hear from clinicians that people are coming with their advanced directives and being able to speak up for themselves. So I do.

Eric 46:21

And do you, do you get a sense that those advanced directives are being filled out helpfully? And if so, like what part of it? I can imagine the surrogate part is incredibly important.

Rebecca 46:32

Say that one more time if they’re being filled out.

Eric 46:33

Yeah, they’re just coming in with advanced directive, but nobody’s ever actually walked through what to write in it. Like there’s a living will. There’s the healthcare agent.

Rebecca 46:42

Yeah, I think, you know, I think. And we saw this with our prepared trials before as well. If you empower people with information that they can read and understand, they come to their appointments and we showed this in our prior trials, people will come to their appointments and speak up for themselves. So people will come in and say, I filled out this advanced directive or I want to fill out this advanced directive, or I got this message. And again it stimulates that conversation.

And we hear from clinicians like the activation energy to bring it up in a primary care when alternatively a patient brings it up on their own or has these conversations because many people are seeing many different providers at the organization. So I think we’re seeing patient empowerment, which again is one of the things that helps me stay passionate about the work that I’m doing.

Anne 47:31

And Anne, I was just going to point out too that because of all the amazing work that Rebecca has done the Prepare for your care advance directive as well as the UCLA advanced directive. They’re really focused on goals and values. And so I think that that helps a lot, too.

Eric 47:46

So less intervention, more goals, values, the things that we really need to make decisions, right?

Rebecca 47:52

Yeah.

Eric 47:53

That’s wonderful, Alex. It’s the top of the hour. Maybe a little bit more Beatles. All you need is love from this amazing quality improvement program.

Alex 48:03

There’s nothing you can know that isn’t known Nothing you can see that isn’t shown Nowhere you can be that isn’t where you’re meant to be it’s easy.

Alex 48:19

All you need is love all you need is love all you need is love, love, love is all

Eric 48:36

Andy Neal, Rebecca, thanks for joining us on this podcast.

Rebecca 48:40

Thank you.

Anne 48:40

Thanks for having us.

Eric 48:42

And to all of our listeners, thank you for your continued support.

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