GeriPal Podcast: Laura Hanson on Improving Advanced Dementia Care in Nursing Homes

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

Alex: This is Alex

Smith.

Eric: Alex, who is our guest today?

Alex: Today, we have Laura

Hanson, who is Professor of Geriatric Medicine and Palliative Care at the University of North

Carolina, Chapel Hill. Welcome to the GeriPal PodCast, Laura.

Laura : It is

an honor to be here in this beautiful place.

Alex: Laura, we usually ask our

guests to start off with a song. Do you have a request?

Laura : I have a

planted request for Carolina In My Mind.

Alex: Planted!

Eric:

We would never …

Alex: We’d never …

Eric: Never!

Alex: Never, never. For our listeners, let’s just be clear, that’s fake news! Maybe …

Alex: Maybe there was some discussion.

Laura : Let’s be fair. One of

my favorite songs when I’m traveling away from home.

Alex: That’s good. Carolina

In My Mind by James Taylor.

Alex, Ericand Laura sing “Carolina in My Mind” by

James Taylor.

Alex: Nice!

Laura : Thank you.

Alex:

That’s great. I think you’re the second guest to sing along.

Eric: Yeah.

Alex: That’s great. We admire your courage.

Laura : Oh, I thought

it was a requirement.

Alex: No, no. It should be. Maybe going forward.

Eric: We only tell people after.

Laura : Oh, got it, got it.

Alex:

Today, we’re going to talk about the study that you published in JAMA. I think this came out

online last year, but in print this year, is that right? Something like that. Published

online November 28th, but post … Anyway, this really terrific study in JAMA, “Effect of

Goals of Care Intervention for Advanced Dementia, Randomized Clinical Trial.” To dive into

this study, maybe first, could you tell us a little bit about why there was a need for a

study like this?

Laura : Interestingly, the idea for this study came out of a

previous study that I did, trying to address decision making about feeding in advanced

dementia. When we did that study, where we were talking about a specific issue in advanced

dementia, a lot of the people that we worked with, family caregivers and nursing home care

providers said, “Please, do something about goals of care, because we can’t really talk about

feeding options, if we’re not talking about the big picture.”

Eric: What did you

do in the study?

Laura : In this study, what we did was spend a huge amount of

time in nursing homes with family caregivers and with people with advanced dementia. We

identified a group of nursing homes in North Carolina that were willing to let us come in and

do research there. We randomized those nursing homes into intervention and control sites. The

intervention sites got a video decision aid about goals of care in advanced dementia,

followed by a structured care plan meeting with the nursing home staff and the family

caregiver, to talk about goals of care and how it might affect the treatment plan. In the

control sites, we had a control video and a regular care plan process.

Alex: I

want to dive into this idea of this video intervention a little bit more, because I think

this is fascinating. There wasn’t, I think, a whole lot of detail, as you’d imagine, in the

written text about what that video intervention was about. You described what it was about,

but there wasn’t a lot of meat on the bones about what is this intervention? Could you tell

us a little bit more about what the intervention consisted of?

Laura : Sure.

We tried to create a technological intervention that would work in nursing homes. For those

of you who don’t work in a nursing home environment, this is an environment where Wi-Fi is

not available. This is an environment where many healthcare providers, especially people like

nursing assistants or frontline nurses are told, “Don’t get on the computers.”

What we did was develop a short, 18 minute video that could be delivered on several different

platforms, so that it would be flexible enough to be available in the nursing home setting.

In that video, we talk about what dementia is. We talk about what goals of care are. We talk

about how choosing a goal of care is essential to frame a treatment plan. We tell three

stories. We have three stories about three people with advanced dementia whose families chose

a different goal in order to guide care and how those stories unfold.

Then

we also talk about the role of the family decision maker for whom this video is really

intended, and the challenges that they might face as they attempt to speak in the voice of

the person with dementia in making these hard choices. That is followed by an in-person

discussion. I want to emphasize that, because I think that a video decision aid alone without

anchoring to the clinicians who are actually delivering care is not going to be as

powerful.

Alex: Right. That’s so helpful to have a clear picture there of

what the content of the video is. When you say, “There are three stories,” I could image that

one would be a comfort-oriented approach, exclusively. One might be some sort of limited

interventions, and one might be focused on prolonging life as much as possible. Is that the

idea of the three different pathways there?

Laura : That’s, basically, the idea,

except for that middle pathway, which some people call limited intervention, and for those of

you who use a POLST paradigm, that’s often the language that’s used. We found that language

when we were developing the video to be too negative. It sounds like taking away, which is

something that I have learned not to do in decision making with family caregivers. Instead,

we described that middle pathway as a focus on function. Being lest concerned about life

prolongation, perhaps somewhat less concerned about comfort, but concerned about supporting

the function of the person with dementia.

Eric: I had a chance to actually

watch the video and the way it’s presented, the middle one, the function one sounded quite

reasonable …

Laura : Attractive?

Eric: … for most people,

including potentially those who want to focus more on comfort. You can imagine that it’s

attractive. “Oh yeah, I’d love to see my loved one regain some function.” For people with

advanced dementia, how realistic is that pathway? What did people actually choose?

Laura : Interestingly … I appreciate your characterization of that middle pathway,

and I do think that there are a lot of families who are interested in something like a middle

pathway for dementia care, but the reality is that two thirds of these families chose comfort

right upfront. They chose comfort as their top priority. By the end of the study, it was a

significantly higher number, more than three quarters choosing comfort as their top

priority.

We did have a number of family caregivers who said, “I can’t choose

between function and comfort.” That, I think, tells us something about what families want

from us and what they’re hoping for for the care of somebody with late stage dementia. It

allows us to think about the things that we do that might actually cause functional

deterioration, like overmedication, or prolonged hospitalization with time in bed that then

can turn around and result in a functional impairment that otherwise wouldn’t have occurred.

I take that to heart as a clinician.

Alex: I wonder for our listeners, is it

possible to view this video?

Laura : It is.

Alex: Is it available

online?

Laura : It is. This was developed with your tax dollars and is freely

available. It’s currently available on the UNC Palliative Care website. People can look at it

there. It’s available on Vimeo, you can just search Dementia Goals of Care. It’s available,

or it will be available, I should say, it’s going through the clearing process now on the

Ottawa Health Research Institute website. That is the largest clearinghouse for decision aids

anywhere in the world.

Alex: We’ll have a link on the GeriPal Podcast to the

video. The decision aid … the structured interview or what happens after the video, is that

available?

Laura : That will be available. It is going through the Ottawa

process. Once it goes through the Ottawa process, it will be posted on their website. It’s a

guide for a structured decision that, when you do see it, you will think is quite simplistic,

but basically asks that the conversation begin with a description of the person with dementia

themselves and the family’s understanding of their health state. Then a discussion of the

goals options, followed by a discussion of the implications for treatment plans, so fairly

straightforward.

Eric: Did it work?

Laura : We think it did. The

intervention was very exciting to deliver, very engaged family caregivers with it. I take

that to heart, because it has be acceptable and interesting for them. Basically, what we

found in terms of the outcomes, our primary outcomes were focused on the quality of

communication and decision making itself. No matter what is chosen, is the experience of

communication improved by this intervention? The families said that it was. That overall, the

families with the intervention experienced a better quality of communication with nursing

home providers, and specifically experienced better quality of communication about end of

life concerns.

The families in the intervention group also felt that they

and the nursing home staff were in stronger agreement on the primary goal of care that was

guiding the treatment plan, which is helpful. It impressed me, because there were still, in

the control group, a significant group of people who felt that they weren’t on the same page.

That’s pretty poignant to feel about someone you love who’s being cared for in a nursing

home.

We also found some downstream effects of it. Some of them surprising.

Some secondary outcomes that we didn’t particularly expect to affect. One was that we saw in

the chart reviews, there was actually more palliative care content to the treatment plans for

the intervention group, so the nursing home staff actually did more in modifying treatment

plans than we expected.

Alex: What was included in the palliative care

content?

Laura : Palliative care content for us, which is something that I had to

develop a measure for, is asking if 10 different domains of palliative care are addressed

anywhere in the treatment plan. Five of those domains are specific treatment decisions that

are relevant to dementia care and five are domains of palliative care, like physical symptom

management, emotional distress management, spiritual caregiving. We saw an increase in that

content.

The more downstream consequences were that we saw the intervention

participants actually more frequently had a MOST form, which is our version of the POLST

completed. We’d never ever in the intervention mentioned POLST. We gave no instructions in

that realm, but the goals of care decision aid fairly easily tracks. We had a number of the

nursing home staff who were in the intervention sites say, “Hey, we could use this in order

to complete MOST forms with families.” Then we also saw a reduction in hospitalization for

this population with the intervention, which again, we didn’t particularly expect, but we’re

excited to see.

Alex: And yet, when Ericasked, “Did it work?” You said, “We

think it did.” Are there some aspects in which the study surprised you and ways in which it

didn’t work?

Laura : Some of the things that were not affected by the intervention

were in the areas of general satisfaction with care and the management of symptom distress.

When we asked families, “If either of those things changed or improved with the intervention,

we didn’t see anything.” That lack of effect is something that I’m now thinking about a lot

in research moving forward. Thinking really seriously about how we can help people who have

advanced dementia actually experience better comfort and experience better care for symptom

distress. I think that’s an area that’s really untapped in dementia care.

Eric:

Who was actually involved in these conversations? Because in many nursing homes, physicians

are not often present.

Laura : That was true here. The leadership in nursing

homes is just what it sounds like. It’s nurses. Nurses, very typically, led these

conversations, and social workers were not far behind, very much involved. It’s very

powerful, if a nursing facility also has an advanced practice provider, so a nurse

practitioner, or a physician assistant who’s on site. If they were, they would typically be

involved, but that’s the minority of nursing facilities.

Physicians, I’m sad

to say, were absent. We could not, despite a concerted effort in the study protocol, to

notify physicians when their families were participants, to notify physicians when these

meetings were taking place. I have to say I know some of these physicians personally, but for

them this is outside that standard of practice so far that it was not possible to change

that. We didn’t predicate the intervention on physician participation, but that is another

area for our future work. Thinking about how physicians can become more involved.

Eric: Were they involved in the most sightings?

Laura : Yes.

Eric:

Somehow this got back to them.

Laura : That is correct. That’s often how

nursing home care works, where nurses are frontline. If nurse practitioners or PA’s are

available, they’re also frontline. Decision making takes place and physicians back that

decision making up.

Alex: Reminds me of hospice. Nurses, frontline say, “I need

this medication, can you sign these prescriptions?” Yes, doctor signs them. They’re back line

on the front lines. It’s interesting, because there’s two sides to the physician involvement

piece here. On the one hand, they weren’t involved, and there may be opportunity for an even

bigger effect, if they were involved and were able to communicate effectively.

On the other hand, this is real world, because most physicians aren’t involved in nursing

homes. If you had all of your physicians gangbuster involved, then it might have raised

questions about how generalizable is the study? Maybe these are some handpicked academic

affiliated nursing homes, or something that are quite different from other nursing homes

around the country. There’s some interesting angles to that aspect.

Laura : That

is true. We designed it to be delivered in real world settings and these are not academically

affiliated nursing homes, for the most part. They represent a very typical spectrum of

nursing homes from some that are exceptional and have a strong investment in dementia care,

to many that are very typical, ordinary nursing homes and match national standards, but don’t

go above that.

I do want to mention one other thing about the physician

involvement, though, that’s interesting to think about for the future. We conducted this

study in a time period and in a location when population health was not a priority. It’s

important to recognize that moving forward with the emergence of population health and with

new quality standards for nursing homes that will penalize them for readmissions, as well as

hospitals. This is a high risk, high transfer population, and there may be new incentives for

physicians to become more involved in, at least, the transitional care of this advanced

dementia population.

Eric: I can imagine that brings up that tension, as far as

what outcomes we should be looking at. Your primary outcome what the quality of

communication. I think, for healthcare systems, what they’re probably more interested in is

potentially satisfaction, but realistically transfers to the hospital care that is expensive

and may not offer a whole lot of benefit to individuals with advanced dementia. How should we

think of when we’re looking at these studies, what outcomes are the most important to look

at?

Laura : Wasn’t it nice that we had an impact on several different outcomes?

That was helpful. That being said, I have chosen to put shared decision making front and

center. I think that’s really essential for people who do research in this area, as well as

for people working in clinical practice with people who have later stage dementia. If we

don’t get the shared decision making right, we cannot impact hospitalization, at least not in

a way that’s healthy and sustainable. Because if we don’t get the shared decision making

right, then what we’re doing is simply working out a mechanism to, apparently, take something

away from people with advanced dementia.

I would argue that the real goal is

to anchor the care of people with advanced dementia in nursing homes with higher and higher

quality care there, so that the idea of an emergency department as the only source of relief

from distress is eliminated from the repertoire. Shared decision making has to take place

first, before those kinds of choices can be meaningfully made. It’s not to say it’s the only

outcome that matters, but it has to be part of the package.

Eric: This is

terrific. Taking a step back, bigger picture. What do you think is the direction that nursing

homes need to move in order to make a palliative approach to care the standard approach in

nursing homes for residents with dementia? If you agree with that statement.

Laura

: I do agree with that statement. My wishlist is very long.

Eric:

Right.

Laura : I’m a little worried about my answer running over time for

this podcast. I think one of the most essential priorities … and I just mentioned this, is

to enrich the nursing home environment itself, which is both the home and the primary source

of healthcare for most people with late stage dementia in the U.S. To enrich that environment

with palliative care expertise. There are a lot of different ways that we might think about

doing that. One way is to have palliative care consultation that’s robust and readily

accessible in that environment. Very few places anywhere in the United States have that yet,

but there are places that are working on that.

Another way to do that is to

make palliative care quality metrics more of a focus for how nursing home providers are

rewarded and supported. Some of that’s starting to occur, as well. Then the third way to do

it is to think about really lifting the skillset in the nursing home staffing profile, so

that can be done through training, although that’s fraught, because the staff turnover rates

in many nursing homes are well above 50% per year.

Eric: Wow, that’s high.

Laura : It’s really … it means that education, literally, exits the building.

Eric: Yeah.

Laura : Training built with systems changes may be

successful. I think more viable is to actually place a higher level practitioner in that

environment. There’s a good amount of research that says, when advanced practice providers

are available, people who can do advanced care planning, who can do more skilled medical

assessment and who can do prognostication, which is unique to advanced practice providers and

physicians, you get a lot of the outcomes that you want.

Eric: Yeah.

Alex: Let’s say I’m a nursing home, I’m listening to this podcast and I really want

to try out this video. Do I have to wait for the Ottawa …

Laura : No. No.

Alex: Give me a couple of steps of what I could do.

Laura : Yeah,

a couple of options. One is to use it directly off of Vimeo right now. That’s perfectly fine

and available. Another is that people can contact me directly, and because of the difficulty

of delivery of even video across the internet in nursing homes, I’m happy to send … oh,

this sounds so old-fashioned, a CD-ROM, a DVD, a paper copy.

Alex: Betamax.

Laura : Exactly. Exactly. Because that may be, frankly, what education specialists in

nursing homes need in order to be able to use this material, and we’re happy to provide

it.

Alex: Wonderful.

Eric: That’s great. Did you work with the

other folks who are making advanced care planning videos around the country, like Angelo

Volandes?

Laura : I am doing some work with Angelo now, but I didn’t at the

beginning of this project. The interesting thing really is the technological limitations in

nursing homes and wanting something that was very low cost, very low health literacy, which

is very important in the research environment. It’s another long discussion, but basically,

in the nursing home environment, you need to pay a lot of attention to low health literacy in

order to be successful, and wanting something that can be developed in a way that it could be

delivered in this very simple way. Yeah, now Angelo and I are collaborating and doing some

work together, which is exciting.

Alex: What’s the next step for this

research?

Laura : What we’re doing now is actually taking to heart some of the

failed outcomes, the area of lack of effect on symptom distress. I’m working on a model

project of dementia palliative care for individuals with late stage dementia who land in the

hospital. We’re testing that model to see if we can have some impact on some of the outcomes

that we were not able to affect when we focused exclusively on goals of care as our primary

intervention.

Eric: Great.

Alex: Great.

Eric: Any other

questions?

Alex: Should we have another verse?

Eric: That sounds

wonderful.

Alex: Let’s do the one with the word dying in it.

Alex, Eric and Laura sing “Carolina in My Mind” by James Taylor.

Produced by: Sean Lang-Brown