Plenary Abstracts at AAHPM/HPNA: Yael Schenker, Na Ouyang, Marie Bakitas

Eric 00:00

Welcome to the Jared Powell Podcast. This is Widera.

Alex 00:03

This is Alex Smith.

Eric 00:04

And Alex, this is a live podcast at the HP and a HPM annual meeting. And who do we have with us?

Alex 00:11

We have a wonderful panel of guests, and today they’re going to introduce themselves, starting with Marie.

Marie 00:17

Hey, everyone. I’m Marie Bakitas, and I’m a professor at the University of Alabama at Birmingham and also the associate Director of the center for Palliative and Supportive Care.

Yael 00:28

Hi, everyone. I’m Yael Schenker. I’m a professor of medicine at the University of Pittsburgh and also director of the Palliative Research Center.

Na 00:36

Hi, everyone. I’m Na Ouyang. I’m a PhD candidate at Yale School of Nursing.

Eric 00:42

Great. So we’ve got a lot to talk about. We’re gonna be talking about three different articles that are gonna be presented Saturday, I believe, at the annual meeting. But before we get into the topics, I think we have a request. You have a song request?

Na 01:01

Yes, I requested the song. The name is the Sound of Silence.

Eric 01:06

Why did you pick the Sound of Silence?

Na 01:08

I like this song very much, first of all. And also I think it implies something nowadays.

Eric 01:16

Anything else from our colleagues or, how about we just jump into the song? Maybe they’ll sing along.

Yael 01:21

Let’s hear the song.

Marie 01:21

Yeah, let’s hear the song.

Alex 01:27

(singing)

Eric 02:26

Excellent. Thank you, Alex.

Alex 02:28

Yeah. I think that song is a protest song that fits our time, about people not listening to each other and how in times of turmoil, we need to listen to each other and not the neon gods we’ve made.

Marie 02:40

Hmm.

Alex 02:41

Who could that refer to? We’ll do those verses at the end.

Eric 02:44

Yeah, maybe I may sing along, then. We’ll see. Have to see. Well, let’s jump into it. We’ve got a lot to talk about. Three different articles. Marie, I’m going to start off with you. You did a rural tele-palliative care consultation study. Before you tell me actually what you did, why did you decide to do this study with your group?

Marie 03:08

So, living in Alabama, which is our palliative care desert in the south, there were no palliative care services in any of the small rural hospitals. And so we decided that we needed to bring palliative care there. It wasn’t realistic to bring it by people. And so the video consult was what became the mode. We went to a hospital in Mississippi, one in Alabama, and one in South Carolina.

Eric 03:38

And what did you actually do?

Marie 03:42

So probably the most important thing is we developed the consultation as a culturally based consultation process. And so we worked closely with a community advisory group who, through focus groups, told us how it was that black and white individuals with serious illness had wanted to be treated. So their caregivers did focus groups. And then we incorporated that information into the consultation process. NCP guideline, standard consultation. And so really, this whole thing was very focused on dealing not only with the issues of rural, but also the diverse cultures that we have.

Eric 04:27

Yeah, I gotta ask about the community advisor. Actually, I think I saw a poster on this. Was it Sarah?

Marie 04:36

Shena.

Eric 04:37

Shena.

Marie 04:37

Dr. Shena Gazaway. Yes.

Eric 04:40

She had a wonderful poster. And, you know, I guess one question is, like, when you do these community advisory boards, like, what communities are you including? I’m just trying to think of, like, if there was a study of Widera, and Widera was not included in the community advisory board, but you had to put together a community advisory board about Widera. Like, what communities would have been included for that study? Like, would you include the doctors that I work with, healthcare providers where I live in Marin? I don’t want those people to be making decisions for me. So I don’t want my Marin community to. How do you think about community advisory boards when people have a lot of intersectionality, beliefs, cultures, even within a community?

Marie 05:25

Sure. So the community that was the one we tapped for the original study was an R21. Dr. Renee Elk ran that. I was a consultant, and the community was in Beaufort, South Carolina, which has a mix of people who have had experiences with slavery, with deeply held religious beliefs, and both black and white cultures and very rural. So there was a smattering of people who did the original focus groups. And it was fairly homogenous. I mean, there were differences. Actually. The black individuals wanted to have a separate one from the white individuals. And so we took that into account and the tailoring of our. Our consultation. And so it was really the patients, you know, the caregivers, the family members were the ones who were sort of the closest in observing. Later on, of course, we added health professionals to, you know, give us more information. Community leaders, and definitely faith community leaders.

Eric 06:37

And then what was in the palliative care syringe what was the intervention?

Marie 06:44

So the intervention was, I mean, it took us about a year to incorporate and then get feedback on the aspects of palliative care consultation that needed to be sort of tweaked. So I’ll give you a very easy example. We were told that patients wanted to be treated with respect, to be called Mr. Or Mrs. Unless they were told. You told the clinician something different. They didn’t want you to use jargon. They wanted you to be respectful of their cultural beliefs and their, you know, faith beliefs that were driving their health and illness. And so there were things that we incorporated into the consultation that then the remote doctors were doing the video consultation. They went through an immersion training over a couple of days to really learn about how people wanted to be addressed with palliative care. And so those, I think, were kind of some of the main things.

Eric 07:47

And then the actual. So you were doing teleconsultations. Right. So.

Marie 07:53

So the rest of it was. So they. The physicians learned how to do this. And then, because they were doing it remotely, you know, so they were sitting.

Eric 08:01

In an office or home sitting.

Marie 08:02

They’re sitting in their home, in their office. And there is a local nurse research coordinator at each of these three rural hospitals, and they recruited patients. Another very important feature of the culturally based consultation was that we had a community advisory group at every single hospital. And so those community advisory group members, one of them would come in with the research coordinator to actually recruit the patient. So they were the first one to talk to the patient locally. They’re a member of the community, they know everybody. And they would say, we helped to help design the study. We think this is a good thing for you to do. And then the consultation would happen.

Eric 08:48

And was it just with a physician or was there interprofessional team?

Marie 08:52

So in this case, it was just with the physician, though the nurse coordinator was there present during the whole consultation. And then they, you know, so just think of the way that you usually do, you know, your consultations and beginning with, you know, hello. But they did something different. They said, well, you know, you’re in Alex City, Alabama, and I know such and such or so and so about Alec City. And, you know, do, you know, so and so, you know, so they made some connections.

Eric 09:21

Building trust, right?

Marie 09:22

Building trust and rapport that gave the patient the idea that this is somebody who kind of knows something about.

Eric 09:30

This is not just a random talk in New York City.

Marie 09:34

That’s right.

Eric 09:35

Doing consultations, really.

Marie 09:37

This is somebody who knows somebody who knows you and me. And my community and about my family and those kinds of things. So that was established up front then after the end of the consultation. So, you know, there’s the idea of bringing video equipment in and all that. The nurse coordinator then followed up three days and six days later to see were there any questions, were the recommendations that were being made being followed? And then we did our assessment measures.

Eric 10:10

Was it just a one time visit or did you follow people over time?

Marie 10:13

So it was the one time visit by the physician, but then the follow up happened at day three. By then they usually were out of the hospital actually. So they called them at home and, and also at day six.

Eric 10:25

And who was included? What kind of like all patients, hospitalized, patients with serious illness, patients with cancer, patients with.

Marie 10:32

So it ended up, I mean, we were looking at the typical admissions to the hospital. Keep in mind, just as we started, so did Covid. So ultimately our intended audience were people 55 and older, Black or white race, and at least one condition that was a cancer or non cancer, progressive chronic illness.

Eric 10:55

So one serious illness. Did I have to severity of that? Like if you had just some mild COPD to count if you’re being hospitalized?

Marie 11:03

Yes. Okay. And. And they had to have a family caregiver.

Eric 11:08

Other questions from the groups before we do the results.

Yael 11:13

What was most challenging? So all of this was happening during COVID and I can imagine there were a few distract. What was the hardest part?

Marie 11:23

Well, pivoting, in fact, our small rural hospital in Mississippi actually never recruited a single patient in the first year because where it was located, only people who, and I forgot to mention in the eligibility criteria, they had to be living at home and they couldn’t be in hospice already. And so the people that were getting admitted were people who couldn’t afford to go anywhere else.

Eric 11:52

Yeah.

Marie 11:52

And so the most challenging part was trying to get the population that we had banked on in terms of our recruitment to get a normal population that’s typically admitted to the hospital. And then because no one could come in, we had intended for their family member to be there. Their family members could not come in. We had intended for the community advisor group to come in and do the thing. So they couldn’t come in. But the community members and our team, I’ll attribute Dr. Shena Gazaway, came up with, they made videos. And so the coordinator would bring in the video on a little tablet and say your community members helped to develop this. Here they are. And so that ended up being really successful. But you know, the idea of doing anything inpatient during COVID you know, was kind of our worst nightmare.

Yael 12:49

Yeah.

Marie 12:50

Yeah.

Alex 12:51

Could you talk a little bit about the other arm of the trial? I think it was usual care and whether that included in person palliative care consultation.

Marie 13:00

So usual care in a small, you know, 80 bed rural hospital includes what usual care is for people admitted to a small 80 bed rural hospital. There was no palliative care there. There were no specialists there, only hospitalists. And so if there was any specialty care needed, well, they didn’t get it.

Eric 13:22

Okay, big reveal. Did teleconsultation, pallid teleconsultation to rural hospitals, did it work?

Marie 13:31

Yes.

Eric 13:33

What were the outcomes? What did it show?

Marie 13:35

And no. So our main primary outcome was symptom distress measured by a very familiar tool, the Edmonton Symptom Assessment Scale. And we had a greater decrease in symptom intensity at day seven versus the usual care group by both a clinically meaningful and a statistically significant difference. Our other measures, in retrospect, were probably not the best ones to pick for an acute intervention because we only followed patients to day 30 for this intervention. Quality of life measured by the A Promise tool was not any different. And resource utilization was very low in all the groups. It was not very different. It was not different.

Eric 14:24

So it’s hard to improve resource utilization for these people where some of them didn’t sound like the sickest of people admitting them to the hospital, but all had some type of serious illness.

Marie 14:35

It wasn’t eligibility criteria, but all of our patients were palliative performance scale of 70 or greater.

Eric 14:42

Okay. And then I’d also imagine from a quality of life perspective, like a one time visit by a palliative care provider, I can’t imagine it really significantly improving quality of life unless there was robust like the symptom. The one time symptom was just right.

Marie 14:59

And even if it made a difference, which I’m not sure that it did, every other study that showed, including some of my own, improved quality of life wasn’t measured until like six months later. And so I think that we probably. The quality of life was probably not the best measure and we actually measured it in both patients and family caregivers. So we had the standard, the same tool that we measured in both and there was no difference. But again, hindsight’s 2020 probably wasn’t the best measure to look the other one we tested in an exploratory way was feeling heard and understood. And so I’m going to reserve the results of that, which wasn’t different but were interesting for another day or Question.

Eric 15:46

Okay, so my last question about this before we move on is we had a podcast on telepalliative care in the community, going to people’s homes, really showing was it non inferior? I forget what the actual equivalence. I think that was the equivalence one for this one. Is there something about acute hospitalization where being in person, how much does that matter? For the non symptom stuff you think like the building trust, the getting to know people, just seeing what’s going on in the room, like reading the room. How much of that is just the importance of being in person versus how much of that do you think it doesn’t matter if it’s in person or teleconsultation?

Marie 16:30

I actually don’t think it matters if you can establish rapport and if you do good telehealth etiquette, which is seeing who else is in the room, addressing everybody that was there, et cetera. And they had requested in their cultural tailing that the physician wore a white coat when he was going to be seen on the screen. And so I think that really it, it didn’t matter if you could develop rapport and respect. And so our objective data about that is we had a 10 item telehealth satisfaction measure that’s a common one that’s been used and we had greater than 95% agree or strongly agree to the satisfaction with doing the telehealth. Would you do it again?

Eric 17:22

So people liked it? They.

Marie 17:24

Yes, they absolutely thought it was great.

Alex 17:27

When can you bill for this? Like if we started this today, could clinicians bill for the video palliative care.

Eric 17:35

9, 9 something something CPT code.

Marie 17:38

So this is a moving target right now because the, you know, the emergency pandemic telehealth regulations that were waived have sunsetted as of January 1st. And so I’m not really sure. Okay. I think there’s no reason why if you could bill for a telehealth visit inpatient, then you certainly would be able to bill for this one. But I think right now it is a moving target about that. So we’ll have to kind of wait and see.

Alex 18:12

Okay, last quick question. When you say telehealth, you mean like video health, like so they could see each other?

Marie 18:19

Yes. So we were very clear throughout our reports that this is a video consultation.

Eric 18:25

And did people get advanced care planning?

Yael 18:28

Good transition.

Marie 18:29

I want to ask about the advanced care planning. So the answer was yes, but not the way that Yale did it.

Eric 18:37

Yale. So you did a study on advanced care planning?

Yael 18:42

I did.

Eric 18:44

What motivated you to do this study?

Yael 18:47

Yeah, it’s great question. I think my motivations are similar to Marie’s actually. It’s all about how can we make for me advanced cancer care more patient centered, Recognizing that most people don’t have access to a palliative care specialist. We’ve looked at that in a couple of different ways. We did a large primary palliative care trial. We gave these tools to oncology and fusion room N that was complicated. That was my prior Jerry Powell appearance. This for me in advanced care planning, the way I think about it’s really giving tools to patients and families and it is guideline recommended in advanced cancer. But there are a lot of different ways to do advanced care planning. I think we all recognize that the question that motivated this trial was which.

Eric 19:43

Approaches best and what did you actually do in the study?

Yael 19:49

So we compared two different ways to do advanced care planning that are pretty different in terms of the resources and the complexity. So one was, you know, patient directed advanced care planning. We used prepare for your care written and web based tools.

Eric 20:07

Our own Rebecca Sidori at ucsf.

Yael 20:09

Yes. And I’ll say this is, you know, when I say we, this is a huge group of incredibly committed people including Rebecca from prepare for your care and bud hams from respecting choices. And what we compared the patient directed arm to was a facilitated advanced care planning approach using respecting choices.

Eric 20:28

And when you say facilitated, what does that mean again?

Yael 20:30

So facilitated means we had nurses who weren’t otherwise part of people’s cancer care teams who were trained using the respecting choices model, went through a three day training, they were certified and then they had visits with patients and families who are invited but not required to walk through the steps of advance care planning using the respecting choices.

Eric 20:54

So one group just got prepare for your care, which you don’t need a facilitator. You just email them or email them information on prepare for your care. They do the homework they talk about then with their doctor or their healthcare provider.

Yael 21:10

Yeah. And so, you know, prepare for your care. The way we did it, we really left it up to people to do this on their own time at home. We made up to three reminder calls. But it was very different from bringing people into like a research office and going through all the steps.

Eric 21:26

And the facilitated one was not group visits, it’s one on one. So resource intensive.

Yael 21:31

Yes, exactly, exactly.

Eric 21:32

So this is a resource intensive advanced care planning versus resource light.

Yael 21:37

Exactly.

Eric 21:37

And what was your primary outcome that you were looking at?

Yael 21:40

So our primary outcome was a very patient centered outcome. It was engagement in advance Care planning. It’s using a validated scale that measures sort of patients behaviors, you know, on multiple different advanced care planning behaviors. So not just, you know, is there a form but you know, thinking about sort of their readiness and self efficacy for things like identifying a surrogate and talking with family, talking with physicians. So it’s a validated scale. It was developed as a huge long survey. I think was 82 items. The one we used was 15 items.

Eric 22:13

So I got a question then.

Yael 22:14

Yes.

Eric 22:15

So I’d imagine like if I’m doing a smoking cessation study.

Marie 22:19

Yes.

Eric 22:20

Should my primary outcome be engagement in the idea of smoking cessation or should it be smoking cessation?

Yael 22:27

So I think it’s a fair question and I think this question of outcomes of advanced care planning, what’s important obviously has been a subject of debate in our field and a lot of that debate happened after we had sort of designed our trial. But what I will say is, and what I think is really important, when we think about advanced care planning, it’s not a single outcome. So we also had, you know, looked at advanced directive completion, we looked at other advance care planning sort of action outcomes. And then we enrolled patients and caregivers. We followed patients until they died or the end of the study period, whichever came first. And then we did interviews with bereavement caregivers and we asked about distress and goal concordant end of life care. So we had a whole range of outcomes.

Eric 23:10

I love that because like you completely destroyed my argument because smoking cessation, like we do want people to smoke. But ultimately like the advanced directive is a middle piece. It’s not like it’s a. Advanced care planning is a process and advanced directive is just one thing you can think about like hospital utilization. But like if it’s really goal concurrent care, hospital utilization is not the most important thing. So like what is the right outcome we should be looking at?

Yael 23:37

Leave that open for the. Yeah, that might be a whole separate podcast.

Eric 23:43

Well, if there was one. Is there one? Could you think of one? Marie, you were going to say something.

Marie 23:49

Oh no, you’re staying away. I was going to say that it is very tricky. It’s very tricky. Outcomes are very tricky in palliative care in general because you know, typically in other, you know, drug studies and things they measure survival. Right. And so that’s pretty easy. That’s like not anymore.

Eric 24:16

We’re using all these surrogates.

Marie 24:18

Yes. No.

Eric 24:18

And so amyloid salads, disease progression free survival, like things that are much harder to even.

Marie 24:24

Right. And so it’s hard, it’s really hard to think about what is the best outcome because you couldn’t follow everyone till they died and then find out after the fact from these family members whether your intervention helped that process. I was really wondering what you did find from the people that you did interview the family members about after the fact.

Yael 24:49

Yeah. So I can share the findings. And I totally agree. And the other thing I’ll say about, you know, outcomes of advanced care planning. So absolutely, it is complicated. I think there’s not a single most important outcome. We have sort of talked about this as a field and there was a big Delphi study. Many of you were probably part of it, that Rebecca Sodori actually led, where we had to rank. It was like 125 outcomes or something. And so we’ve thought about this and goal concordant care definitely was the top. But below that were all of these action outcomes that people see as important, you know, as far as advance care planning.

So, you know, was there a conversation with family? Was there a conversation with physicians? Was a surrogate designated? Was there something in the chart about goals of care? Were values elicited? So we thought about all of that and when we designed our trial, our primary outcome, and I can, I can share what we found.

Eric 25:42

Was there a difference between resource intensive versus not?

Yael 25:45

Yeah, so there was a difference. I’ll say all of our advance care planning action outcomes increased in both arms, but engagement in advanced care planning, our primary outcome, increased more in the facilitated arm. So the resource intensive arm. And it was both statistically and clinically significant on that scale. And then what was kind of most surprising and most interesting for me was this consistent story. When we followed patients through mortality and did our interviews with bereaved caregivers, we found lower distress using a validated scale among bereaved caregivers who had participated in the facilitated advanced care planning arm.

So that was lower PTSD symptoms using the IESR scale. And then we also found higher reports of goal concordant end of life care. So caregivers in the facilitated arm were more likely to report that their loved one received care at the end of life that aligned with what they would have wanted. So it was a pretty consistent story about the value of a more resource intuitive.

Eric 26:51

Marie’s super excited approach. She’s excited.

Marie 26:53

So I want to know if I’m not supposed to be taking this away from you, but take it away if you, if you learned, you know, if there was where the person died had anything to do with also the family member outcomes. So were there differences in where they died and did that make a difference?

Yael 27:16

So did it make a difference? So we did look at where they died, and we looked at whether they died where they would have wanted to die. By asking caregivers with those questions sort of separated in a long survey in an attempt to minimize bias. Perhaps not surprisingly, most people wanted to die at home. A smaller number died at home. We didn’t find, and we weren’t powered to look at whether there were differences between arms in whether people died in their preferred location, although there may be a suggestion there, and that might be something to think about for larger trials and sort of talk about what we want to do next. But I think that’s a really important piece of how we sort of think about goal concordance.

Eric 28:03

Speaking of larger trials.

Yael 28:04

Yes.

Eric 28:05

There was a study that was recently published, which I think we’re doing a podcast that will be published in a couple weeks on advanced care planning of community dwelling. I think older adults greater than 65 using facilitated, I think advanced care planning versus usual care. I think there was an increase in advanced care planning documentation, but the group that got the intervention had higher rates of potentially burdensome care. It’s been a while since I looked at that. Does this ring a bell to you, Yale?

Yael 28:41

It does ring a bell, and I hope we’re thinking about the same one.

Eric 28:44

It came out, I think, in December and jama.

Yael 28:47

Yeah. Yeah. So I think so. I mean, a couple things to say. I think when we talk about facilitated, we’re not always talking about the same thing. And there are different levels of facilitation. And so our facilitation, this was a trained nurse who met for. It was on average just under an hour. It wasn’t just, can we get people to do this thing? It was really sort of an emotional support plus advanced care planning visit, which I think. And we now have. We have qualitative data that we’re analyzing. We’re hearing a lot about the value of that and what that sort of meant to these patients and families in that time in advanced cancer. So I think that’s one piece. When we say facilitation, it can be many, many different things.

Eric 29:37

But what if, since you brought up the word value, what if increasing goal concurrent care means there may be an increase in burdensome treatments at the end of life? Is advanced care planning again? We’re going to have a podcast on this particular subject. Is that a worthwhile goal then?

Yael 29:57

Yeah. And so I think that’s a very fair question. Gets back to this debate in our field about what the important outcomes are. I think the most important outcomes are what matters most to patients and families. Those are hard to measure. Right. It’s a lot easier to look in the medical record and see what healthcare utilization looked like at the end of life. And I think we have different stakeholders with different priorities.

But I still think what matters most to patients and families and the idea of alleviating distress amongst bereaved families, which we know is such an important part of what advance care planning accomplishes, I think that’s important. We are going to have healthcare utilization data as well. You know, all of these trials have to look at this from multiple angles. And I don’t have that data to share yet, but we will also look at this.

Alex 30:52

Yale. I wonder what the take home is from this study. When I think about what your findings are like on a population level, it’s much more affordable if we could get everybody to do prepare everybody with serious illness, for example. However, you did find what you said was a clinically meaningful difference in outcomes for people who had the facilitated advance care planning, which is much more resource intensive. What ought we as a society do from a health policy perspective with these data?

Yael 31:26

Yeah. So, I mean, I think one take home from this study is that advanced care planning is really hard to do. And we’re hearing this in our interview data now. When people have advanced cancer, they are navigating so many things and this is really hard to do. And so for some people, that additional, you know, facilitation piece is super important. There are other people for whom having access to those incredible, you know, patient, you know, friendly, easy to read, you know, multilingual materials is the perfect thing.

And so what we’re thinking about next is sort of a stepped care approach to advance care planning. I know you guys have talked about stepped care approaches to advanced care, but, you know, can we start with something less resource intensive and step people up if they don’t engage or respond?

Alex 32:18

Great, thank you.

Eric 32:19

And I also love, as a clinician, I love the idea of just. And I think this is like, it’s in Rebecca Sudori’s preparing people and importantly family members for really, really hard decisions that come up. Because if something happens, they’re the ones that are like still alive in bereaved family member situations. Which kind of brings us to our third article. I don’t think this is our first time that we’ve had a pediatric article. Is it the first time? No, I think we’ve had one more.

Alex 32:52

We’ve had pediatricians on pediatric articles per se. Yeah, so you’re right. I think this is the first time.

Eric 32:58

So let’s turn to our third article and I want to make sure I’m pronouncing it. Is it Na?

Na 33:04

Yeah.

Eric 33:04

Great. Why did you do your study?

Na 33:07

Yes. So first, my study focused on early bereaved parents, which means those parents who lost their child in the first two years, which is extremely vulnerable time, they experienced a lot of prolonged grief symptoms. And I also realized the communication between parent and clinician is really hard, especially among those parents whose child had incurable cancer. Those communications are always very challenging. And I was wondering whether the communication can impact their grief, even though that’s maybe a long period between grief and communication during treatment. And then I’m also curious whether parents who receive end of life preparation can help them to relieve their grief symptoms. So my research is kind of focused on exploring the relationship between communication and the grief in the early bereavement stage.

Eric 34:10

Tell me, what did you do in the study?

Na 34:13

Yes, so we did a secondary data analysis. Actually the data set is from Dr. Jennifer Snaman. She’s a pediatric oncologist at Dana Farber. She collected data from St. Jude and Dana Farber for those parents who were in the early bereavement stage, and recorded their experience and their child’s treatment experience. So that’s a very, very large survey. This survey included like 195 items. But they developed the survey involved a lot of bereaved parents to have their input to develop the survey and in every stage of development of the study. So that’s a really awesome data set. And they have 125 participants in that data set.

Eric 35:03

So I did a 725 bereaved family members. So parents early bereaved within the first two years?

Marie 35:10

Yes.

Eric 35:11

And what was the primary outcome that you were looking at?

Na 35:14

Yeah, so my primary outcome is prolonged grave symptoms.

Eric 35:18

Okay.

Na 35:19

So that’s measured by the certain item prolonged grave disorder instrument. It’s a validated instrument. And we calculated the sum score, the sum score higher score indicating greater severity of prolonged grief symptoms.

Eric 35:36

And what’d you find?

Na 35:37

We find actually we have three community variables which is the quality of communication and the amount of prognostic information and trust in healthcare providers. And interestingly, over 90% of parents said they trusted the healthcare provider a lot and 80% of them said they have a high quality communication. And 40 or 60% of them, they had enough prognostic information. But there are a lot of parents still feel they are not at all prepared for their child’s. End of life. Which makes the results are very interesting because I thought if you have good communication, then you can better prepare. But it seems like they didn’t prepare for their child’s end of life.

Eric 36:31

So what I’m hearing is that people trust their doctors. They generally have really good quality of communication with their providers. They’re getting some idea of prognosis, but for a lot of them, they don’t feel prepared. I guess my question is, can you ever feel prepared for the loss of your child?

Na 36:54

Yes. So we did interviews after this data analysis and we asked parents, a lot of parents said, yeah, you can never prepare for your child at the end of life, but there is some level of acceptance and some preparation you can do. So.

Eric 37:12

And it was important because, if I remember the abstract track, it was not at all prepared.

Na 37:17

Like 40% of them were not at all.

Eric 37:20

Not a little bit. Not at all prepared.

Na 37:22

Yes. Yeah. So we find that the quality of communication and trust doesn’t really relate to grave symptoms, but the amount of prognostic information impact parental grief. It’s a significant impact. And when we add the preparation fund of life as a mediator, the pathway and the effect of prognostic information on grief disappeared. So which means the preparation fund of life is really important from communication to grave.

Eric 37:56

So am I hearing this right? If you actually want to prepare people for the loss of somebody like their child, the communication and communication about prognosis is incredibly important.

Na 38:09

Yes. But also the impact of prognostic information on grief mainly through the pathways.

Yael 38:19

And when you say impact, just so we’re clear, that means more information about prognosis was associated with less grief.

Na 38:27

Yes.

Yael 38:27

Okay. I just make sure we understand the direction, more prognosis. That’s really important. Yeah.

Alex 38:32

And that the way the prognostic, the greater prognostic information results in less grief is through better family preparation, better parental preparation for the loss of their child.

Na 38:47

Yeah. So that highlights the end of life preparation is super important for parents when they deal with their grief.

Alex 38:55

Right. And I wonder if you, you know, there are differences between what’s said and what’s heard. So might it be that the clinicians tried really hard to convey the prognosis and it wasn’t heard or reported as being heard?

Na 39:14

Yeah, that’s a really good point because that occurs in our interview a lot.

Alex 39:19

Can you say more about what you mean by that?

Na 39:21

Yeah. So we did interviews after the data, the secondary data analysis. And in our interview, some parents said they listen to those information with a filter of hope. So Even though you tell the parents your child is going to die, but they still keep the hope that they don’t want to prepare for the end of life. But those parents also mentioned they would appreciate if the clinician can use different resources like connect with other braved parents or provide professional support like mental health service or therapist to talk with them, which can help them a little bit to accept that sooner.

Alex 40:06

I have a question. I could interpret these results in sort of one of two ways. One way is this is a powerful study that shows clinicians relationships with parents of seriously ill children are strong. We can rely on the strength that those relationships and that trust to have the difficult conversations about prognosis to help parents prepare for the death. The other way I can interpret it more cynically is somewhat in the line of the late Green Jane Weeks study published in New England Journal.

This was her final publication, I believe, where she found that patient satisfaction with their clinicians, and these are patients who had advanced cancer, was associated with having less awareness that they had a terminal cancer. Right. And so the cynical view is the reason they rated their clinicians so high is because they did not have a good prognostic understanding. And had the clinicians pushed the issue, then maybe satisfaction and trust in their clinicians would have diminished. I don’t know any thoughts about that from anybody now or anybody else.

Na 41:13

Actually, I really like your first interpretation.

Eric 41:17

We all do.

Marie 41:21

I guess the thing that just strikes me the most is because I think it was. Was it Prigerson’s tool that you use for complicated grief and the things in adults were preparation or the bereaved family members found that preparation as well as the activities around the death or the circumstances around the death, whether they were traumatized by, you know, like CPR and all that business happening or you know, that those two things were really important. And so I’m wondering, it feels like it’s a very different situation with between adults dying and the family members of adults versus the family of parents of children dying. Do you think there’s a big difference?

Na 42:11

I think so, because a lot of parents mentioned it’s very hard for them to accept that because it’s not the natural order. And they said, as a parent, you’re not supposed to bury your child. So that’s a really. That’s one of the barriers we identified about help parents to prepare for their child’s end of life. Like they need to overcome those, we call it. They feel defeated when they recognized their child is going to die. They felt like they should always fight so That’s a lot of barrier among parents, their own mind.

Eric 42:51

Yeah, I got one. This is a lightning round question for each of you, because I’ve noticed in the last couple weeks I’m sitting with a lot of anger, and I’m recognizing that, and I need to fix it, so I need some positiveness. These studies, each of yours, I can imagine there are periods where, like, it’s incredibly hard. It’s frustrating. There are probably periods where you’re thinking, why did I decide to do this? But what’s one thing that you loved about your study, Marie? One thing you loved about it?

Marie 43:26

I’d have to say that the people that we met at the rural hospitals, to a person, were so grateful to have any kind of resource or attention or specialty care available. And so it was just really gratifying and helped us through the difficulties.

Eric 43:56

Great. Thank you, Yael.

Yael 43:59

I’m going to say the research team, and I think it’s kind of embarrassing to look back at how long we’ve been working on this project for, and this team has stuck together. Covid hit. We had to pivot. People had to be flexible, really being willing to ask questions about advanced care planning models that have been around for decades in some cases. So I’m just very appreciative of that sort of curiosity and dedication.

Eric 44:32

Great.

Na 44:34

I appreciate all the stories I heard from those parents. At the very beginning, I felt that’s so hard to have those conversations when I do this research. But then when I heard them and they gave me a lot of positive feedback, they said, what I’m doing matters and very important for them. And then I felt the motivation to keep working.

Eric 45:00

Well, I want to thank all three of you. Alex, I’ve come to talk to you again about singing the Sound of Silence. Can you do the Disturbed version of Sound of Silence, which is my favorite version of Sound of Silence? No? Have you heard this disturbed version?

Alex 45:15

I don’t know what you’re talking about. Maybe. Yeah, maybe not. Here’s the Simon and Garfunkel version.

Alex 45:24

(singing)

Eric 46:24

Yeah. Yael, Na, Marie, thank you for joining us on this podcast. And a big shout out to Anne Kelly, who’s recording us for the video.

Marie 46:32

Thank you.

Eric 46:33

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

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Disclosures:
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