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Over thirty percent of individuals living with dementia living in the US each year die either of or with dementia – and almost half of those enrolled in hospice have dementia.  As with so many other types of healthcare, there are disparities in both who enrolls in hospice as well as the type of care these individuals receive after enrollment. In this episode, Matt & Donovan talk with Dr. Lauren Hunt from UCSF, an expert in hospice care for persons living with dementia, about dementia at the end of life.  

More resources

• Lauren Hunt Faculty Profile:  https://profiles.ucsf.edu/lauren.hunt 
• Article referenced in this episode:
• Hunt LJ, Gan S, Smith AK, Aldridge MD, Boscardin WJ, Harrison KL, James JE, Lee AK, Yaffe K. Hospice Quality, Race, and Disenrollment in Hospice Enrollees With Dementia. J Palliat Med. 2023 Aug;26(8):1100-1108. doi: 10.1089/jpm.2023.0011. Epub 2023 Apr 3. PMID: 37010377; PMCID: PMC10440673.
• Article on identifying disenrollment in claims data: 
• Hunt LJ, Gan S, Boscardin WJ, Yaffe K, Ritchie CS, Aldridge MD, Smith AK. A national study of disenrollment from hospice among people with dementia. J Am Geriatr Soc. 2022 Oct;70(10):2858-2870. doi: 10.1111/jgs.17912. Epub 2022 Jun 7. PMID: 35670444; PMCID: PMC9588572.
• CAPRA Website: http://capra.med.umich.edu/

Transcript

Donovan Maust:

In our first two seasons, we have had several episodes related to how dementia is diagnosed and recognized in administrative or survey data. For example, listeners may recall when Matt made me take the TICS (Telephone Interview for Cognitive Status) from the Health and Retirement Study to assess my cognitive function. But life for a person living with dementia generally extends for many years after they receive a diagnosis. And in this episode, we're going to focus on dementia at the end of life. As you will learn if you read our guest's paper, over 30% of individuals in the US each year die either of or with dementia. And almost half of those enrolled in hospice have dementia. As with so many other types of healthcare, there are disparities in both who enrolls in hospice as well as the type of care these individuals receive after enrollment, and I bet you could guess which populations experience worse care. So today, we're happy to have the opportunity to talk with an expert in hospice care for persons living with dementia, so let's get started.

Matt Davis:

I'm Matt Davis.

Donovan Maust:

And I'm Donovan Maust.

Matt Davis:

You're listening to Minding Memory, a podcast devoted to exploring research on Alzheimer's disease and other related dementias.

Donovan Maust:

Today, we're joined by Dr. Lauren Hunt, an assistant professor in the UCSF School of Nursing and affiliate faculty in the Philip R. Lee Institute for Health Policy Studies. Dr. Hunt is a nurse practitioner who received her PhD in gerontological and palliative care nursing at UCSF. She's also a health services researcher with an interest in understanding the geriatric palliative care needs and experiences of older adults with dementia across care settings. Today, we'll be discussing the part of her research that focuses on end of life healthcare use and quality in older adults with dementia. Lauren, welcome to the podcast.

Lauren Hunt:

Great. Thanks so much for having me.

Donovan Maust:

So for many of our conversations, we focus on a paper published by our guest. That's the case today. And we're going to be talking about an article titled Hospice Quality, Race, and Disenrollment in Hospice Enrollees With Dementia, published this year in the Journal of Palliative Medicine. The citation for the article is linked to this episode, so please make sure to check it out.

So Lauren, we want to really start with some very high level basics for our listeners. So what exactly is hospice care? And then in the US, how do we pay for it?

Lauren Hunt:

That's a great question. So in United States, the majority of people who die are over the age of 65, and therefore, eligible for the Medicare hospice benefit. Most of my research focuses on the Medicare Hospice benefit since I study mostly older adults with dementia, the majority of whom are over 65, so I'm going to be kind of focusing on the Medicare hospice benefit, which is where, how most people access hospice in the US. So the Medicare hospice benefit has been around since the 1980s and is available to all Medicare beneficiaries who have a terminal condition with an expected prognosis of six months or less. And they also must agree to forego disease directed treatments when they sign up for hospice.

So what is hospice care? What is required of the Medicare hospice benefit? So hospice care is an interdisciplinary and holistic approach to care that's provided by a team of nurses, social workers, chaplains, aides, and physicians. And it's really aimed at addressing physical pain and symptoms and social, spiritual supports to people who are in the end of life period. So hospice provides all that interdisciplinary support, and then it also pays for medications and durable medical equipment, kind of all of the needs related to the terminal condition and related diagnoses for when a person enters hospice. So when people enter into the Medicare hospice benefit, they have two 90 day benefit periods, followed by an unlimited number of 60 day benefit periods, and can be re-certified at the end of each period. So they can actually be enrolled in hospice for much longer than six months. This is a common misconception out there that you can only have six months of hospice.

So basically, the way it works is when people enter into hospice, it's kind of like an HMO. Hospice takes care of pain for all of the care related to the needs of that patient. And there is Medicare pays a ... You asked about how Medicare gets ... How the hospice gets paid for, so Medicare pays a daily rate for people in hospice, and there's four different levels of care. Most care is for routine care, which is kind of like every day care that you would get when you were in hospice. Another point to mention about pain for hospice care is that hospice agencies are subject to an aggregate cap. This is kind of a way that Medicare has set up to control costs around hospice care. So the hospice agency has an allowable amount that they receive based on the number, an annual per beneficiary amount, times the number a beneficiary serves. And if the hospice agency goes over that amount, they have to pay back the amount to Medicare.

Matt Davis:

So you mention agency. Can you tell me sort of how hospice is administered across the country?

Lauren Hunt:

So there's individual hospice agencies, so there's actually between 5000 and 6000 hospice agencies around the country. It's kind of like a hospital, basically, or a nursing home, so it's an organization, and then they receive money from Medicare to then provide the services to Medicare beneficiaries or other payers for people who are not in Medicare.

Matt Davis:

So in a given region, does a person often have options to choose from different agencies? Or is it kind of non-overlapping agencies?

Lauren Hunt:

Yeah. So for example, in the Bay Area, there's probably around 20 different hospices, hospice agencies. So it depends on where you're located, how many different hospice agencies there will be and how competitive the market is. This has actually been a big issue in recent months and years. I don't know if you've been following this at all in the news, but there's been a big influx of new hospices into certain regions like Southern California and the Southwest. And so Southern California, for example, has over 1000 hospice agencies now, which is ... And then there's now a lot of concerns around fraud going on within the hospice interesting.

People might have the ability to choose within a region. There might be a lot of competition, or there might only be one hospice. There's also, depending on whether the person is in a facility or not, there's the facility might have relationships with a particular hospice, and this is also something that's kind of been on the radar of Medicare recently is lack of options for choosing between hospices for people who are located, who are residing in facilities.

One thing maybe I should clear up is around what hospice care is, and this is also another kind of misconception that hospice is a place, and actually, it's a service that's provided to wherever the patient is living. So the hospice agency will go out to visit the patient, whether they're at home, or in a facility, and they can be in different types of facilities. So they can be in assisted living, or they can be in a skilled nursing facility, or board and care. And so the hospice is, it's kind of like a consulting agency, where they go out and the nurse will usually visit once a week. The social worker will visit every other week. The home health aide will go in a couple times a week, so the hospice is really going to where that patient is living.

And then there is some inpatient hospice. So if you're having an acute pain crisis, or symptom crisis, or some people really prefer to not die at home, then there's an option to go and spend some days, usually short periods of time, with an inpatient facility.

Matt Davis:

So in the opening of the paper, you talk a little about burdensome transitions. We're wondering if you could tell us a little bit more about what a burdensome transition is, specifically for people living in hospice.

Lauren Hunt:

Yeah. So I think it was Joan Teno and Susan Mitchell who came up with this idea of burdensome transitions for hospice patients. So basically, it's a transition in care that might be difficult for the patient and family. So one type of burdensome transition might be a transfer to the emergency department or hospital, which can be really pretty scary places, especially for people with dementia, where the staff aren't necessarily trained to interact with patients with dementia. There's a lot of hard surfaces. People can get bedsores and falls. So it can really just be a change in setting, an abrupt change in setting that requires a lot of effort on behalf of the patients and families to get there or navigate those circumstances.

So hospice disenrollment, which I think about as being a burdensome transition, so this refers to when hospice services are discontinued while the patient is still alive. And it's also sometimes called live discharge. And I think of disenrollment as being potentially burdensome to patients and families because it disrupts the continuity of care and interrupts those comprehensive and holistic services that hospice provides that I was just talking about.

Donovan Maust:

In your first answer, when you were explaining what hospice is, you mentioned that it's a misconception that people disenroll after six months, but actually, it can be renewed and extended. And so I guess, why isn't their hospice care extended, as opposed to being disenrolled?

Lauren Hunt:

Right. So there's a number of reasons why people can be disenrolled. So one of them is related to, it's called disenrollment for extended prognosis. And this is a type of disenrollment that's initiated by the hospice agency. So disenrollment can also be initiated by the patient in some circumstances, but in this case, there's a few reasons why the hospice agency can disenroll a patient. And so in order to qualify for the Medicare hospice benefit, you need to have a terminal condition with an expected prognosis of less than six months. So if people come onto hospice and then they stabilize or even improve, then they no longer fit that criteria. And so in that case, they may need to be disenrolled from hospice.

And I think of this ... Sometimes people call this graduating from hospice, and I think of it as getting expelled because it really disrupts the continuity of care and all those services the hospice was providing, nursing, medicine, medications, social services, home health aide, all that goes away. And then families are left scrambling to fill in the gaps, so this is something that I focus on in my research. I see it as a problem for patients and families, and definitely something that I saw in my clinical work. I've seen patients go through this process.

Donovan Maust:

So the other area that you touch on in the introduction is the idea that for CMS improving equity around hospice care is a major priority. I guess, what types of disparities are there related to hospice? And then as a follow-up, is there anything about that that's unique or different specifically for the dementia population?

Lauren Hunt:

Yeah. That's a great question. So I think there's several concerns around disparities for hospice. One is definitely access overall. So there's been some work out there showing that racial minoritized groups have used hospice less at end of life. And so they're losing out on services that they might be entitled to. And then another disparity is around access to high quality hospice care, so this is something that we showed in our study, and others have shown, that racial minoritized groups are more likely to end up in hospices with lower quality ratings than white people.

And then there are these concerned around racial minoritized individuals having worse outcomes in hospice, things like higher rates of disenrollment, more transitions in care, those kind of objective outcomes. So yeah, those are kind of a big three that I can think of. And so in terms of issues that are specific to people with dementia, I mean, I think that these are the disparities impact probably all racial minoritized groups. But I think that there are differences around, because the trajectory of illnesses, like comparing dementia to cancer, for example, are so different. And the needs are so different, I think the disparities in the solutions to those problems might be different. So for example, people with dementia, there's a big issue with disenrollment for extended prognosis and higher rates of disenrollment overall.

So whereas, for example, patients with cancer might have more issues around getting access to disease directed treatments and not having to forego those treatments. So I think that's actually a really interesting area. I don't know of a lot of research out there that has compared disparities between different diagnostic groups, and that's definitely something I'm interested in exploring in my future work. The other thing I will say is that just because the fact that people with dementia comprise such a large proportion of the hospice population, so over 50%, I think that's justification enough for me, anyway, to focus on this population.

Male:

So your paper specifically looks at hospice disenrollment. You touched on this a little bit already. But why would someone disenroll? And how common is hospice disenrollment?

Lauren Hunt:

So there's just a few reasons why people can disenroll from hospice. So there's patient initiated disenrollment, and there's hospice initiated disenrollment. So patient initiated disenrollment can either be because the patients transfers hospices, so they don't actually disenroll completely from hospice, but they will move hospices. And then they can also revoke hospice. So this is if they decide they want to resume disease directed treatments, for example, or for whatever reason, they don't want to be in hospice anymore. In reality, revocation often occurs in conjunction with hospitalization, so an acute crisis, and the patients call 911, and then they go to the hospital. And then they will need to ... If they get admitted to the hospital for an extended period of time, they will have to revoke the hospice benefit.

Then for hospice initiated disenrollment, there's this disenrollment for extended prognosis, which I talked about already. And then there's another circumstance where if the patient moves, the hospice disenrolls them. But then this case is a little interesting too because sometimes it's actually the patient moving out of the service area, but sometimes it's also because the patient gets admitted to the hospital that the hospice does not have a contract with. And so they could potentially be able to offer inpatient care through the hospice if they had a contract with that hospital. But because they don't, then they have to disenroll from hospice. And then the final reason why people can be disenrolled is because a situation is deemed unsafe for the hospice clinicians to go into, and that's quite rare. That doesn't happen very often.

Matt Davis:

And why is it considered a quality outcome?

Lauren Hunt:

I think it's because of these issues that I've been talking about, so that this disruption in continuity of care is challenging for patients and families to navigate. They have all their care provided by hospice, and then hospice leaves. And that's more of an issue for extended prognosis. The other issue with the concern around disenrollment for extended prognosis is around that people, that hospices are enrolling patients who were not truly eligible to begin with. And there's concerns around effects on integrity of use of the hospice benefit. So it's not necessarily a quality outcome for patients, but a concern for Medicare around payment for hospice.

And then for revocation, there's a concern that in transferring and moving, that patients are not getting education around what hospice is. They're not getting their symptom managed. And so they're leaving hospice basically because they're not having their needs met, so that's why it's on the radar of ... That's why it's becoming, has become a quality metric that Medicare is interested in.

Matt Davis:

I'm just getting a little bit more towards your article. How'd you identify disenrollment using claims?

Lauren Hunt:

Yeah. There is a, in the hospice claims files, which is what we use kind of as the basis of our analysis, there's in their current claims files, there's an indicator. And I'm happy to provide the algorithm to anybody who wants. I think it's in one of my other papers. But yeah, there's basically an algorithm that we follow to help identify which reason for disenrollment, and that's been available since 2012, I believe, I think July 2012, that Medicare required collection of that information.

Matt Davis:

Oh, so you do know why they disenrolled.

Lauren Hunt:

Yeah.

Matt Davis:

Interesting.

Lauren Hunt:

We do know.

Matt Davis:

I just assumed that you wouldn't know that in claims.

Lauren Hunt:

Yep, yep. We do know. Yeah, actually, it was pretty exciting when I figured that out.

Matt Davis:

Yeah, that's really cool. Good work.

Lauren Hunt:

One of those moments of joy in research.

Donovan Maust:

When you were ... The way you used to sort of sort the hospices was on using the CAHPS survey. I was wondering if you could just explain for listeners. I don't know that we've talked specifically about that before, what it is and how specifically you used it in your analysis.

Lauren Hunt:

Okay. So the CAHPS survey is the Consumer Assessment of Healthcare Providers and Systems Survey. And I used the one for hospice. I think there's ones available for hospitals and various other settings and providers as well. And so the CAHPS hospice survey is a survey that is sent out to all bereaved caregivers of people who died in hospice. And there's 47 items that ask questions all about symptom management and communication. They ask to provide an overall rating of that hospice on a scale of one to 10, whether you would recommend that hospice. Yeah, so there's just kind of a variety of questions they ask about the quality of care they receive. And then that information is made publicly available on the Care Compare website, so you can go and download this information if you want it.

And it's kind of confusing, the way it's reported because it's reported as these top box numbers, so this took me a while to wrap my head around what this means. But so basically, they sort the scores into top, middle, and low box. So for example, if 90% of the hospices, and 90% of the respondents ... So the score reported on the website would say, "90% of respondents for that hospice rated it a nine or a 10." Right? And then so for the way that we sorted it, we took that top box number and we sorted it into quartiles. So for example, in our top quartile was hospices that were 90% of respondents rated it higher than nine or 10. And then in our lowest quartile, 70% of respondents rated it a nine or a 10. So that's kind of how we dealt with that issue.

Donovan Maust:

And then you mentioned, so specifically for looking that beneficiary race, you use this RTI variable. Could you just give a little? Why does that exist? Why'd you use that?

Lauren Hunt:

Yeah. So RTI stands for the Research Triangle Institute. And so this is a variable that's available in the Medicare Beneficiary Summary file, if you have access to that data. And it is a measure of race and ethnicity that was developed by researchers at the Research Triangle Institute. And it's based on an algorithm that assigns people ... It basically assigns categorized people by race and ethnicity based on their responses to what's in the Medicare enrollment database, and then also, their last name and their geographic region. And it was created because the Medicare enrollment database race measure was known to have problems in under-counting people from Hispanic or Asian and Pacific Islander backgrounds. So I think this is interesting, but maybe other people will.

But so the Medicare enrollment database race measure is based on the Social Security measure, so it's collected in the Social Security database. And so before 1980, people were asked only ... The only categories available were white, Black, and other. And also, people's race was assigned based on if they were the spouse of the primary beneficiary, it was based on the spouse. So basically, most of my population that I look at because most people were born before 1980. So anyway, so the RTI folks developed this measure to address some of those limitations, and then they made it available in the Beneficiary Summary File. I mean, it's still very limited. There's limited number of categories and it's still not self-reported. But it's-

Donovan Maust:

Certainly an improvement.

Lauren Hunt:

An improvement, yeah. So that's what we used.

Male:

So circling back to the paper, to what extent did you find that disenrollment rates varied according to hospice quality?

Lauren Hunt:

Yeah. So basically, what we found is that as the quality scores decreased, disenrollment rates increased for all races and ethnic groups. So by about 10% to 30% from the ... They were about 10% to 30% higher in the lower quality hospices compared to the higher quality hospices. And then up to two times higher in the unrated hospices, which I think get to in a little bit. And then we also found that people with dementia from racial and ethnic minoritized backgrounds had higher rates of disenrollment across the spectrum of hospice quality. So both in the low and high quality hospices, people from racial and ethnic minoritized backgrounds were about 30% more likely to be disenrolled.

Donovan Maust:

So regardless of the quality quartile, minoritized populations had higher disenrollment. Was there anything else from your findings that sort of surprised you, stood out to you?

Lauren Hunt:

Well, the unrated hospices was really interesting. So yeah, this piece is really interesting.

Donovan Maust:

So can you go ahead and get into that and explain who are those unrated?

Lauren Hunt:

Sure.

Donovan Maust:

There are a lot of them.

Lauren Hunt:

Yeah. Yeah. So we talked earlier about the CAHPS survey and the public reporting. So hospices are only required to publicly report if they ... Well, there's occlusions for public reporting, so basically, if you are in operation less than one year, you do not have to report. And then also, if you have fewer than 50 deaths per year and 30 respondents within two years, I can't remember the exact numbers right now. But basically, it's if you're too small, or if you're too new, then you don't have to report your quality data publicly on the Care Compare website.

And so what we found in our study was that there was a lot of hospices that fell into this category. There were about 1500 hospices, about a third of our sample of hospices were unrated. And then basically, we found that the disenrollment rate was much higher in these hospices than the hospices with any quality rating available.

Donovan Maust :

And of the too small or too new groups, do you have a sense of ... Was one of those bigger than the other?

Lauren Hunt:

Yeah. Because of the way we set up our sample, we actually eliminated most of the hospices that were too new because we require two years of data available. And so this is actually an interesting question and something we probably should've explored more. But most of them I think were falling in because they were too small, but that is a great question.

Donovan Maust:

Is it possible that one explanation to account for higher disenrollment is related to the preferences and different groups have different preferences related to hospice care and what care at end of life should look like?

Lauren Hunt:

Definitely. So we didn't actually ... And for this study, we actually, we talked a lot about kind of the different reasons for disenrollment. In this study, we looked at all disenrollment and didn't break it up by reason, which is actually something we should [inaudible 00:28:36].

Donovan Maust:

Another thing to do.

Lauren Hunt:

And so in our other studies, we've been stratifying by reason for disenrollment. And we've actually found that across the board, for whatever the reason, racial minoritized people also still have higher rates of disenrollment for any reason. But yeah, I think I guess to this issue around ... So yeah, so it's entirely possible that there's higher rates of revocation and going to the hospital, moving, going to the hospital, for racial minoritized groups. And I think that this gets at a particular issue with the hospice model for these populations is this requirement that people forego disease directed treatments. And for some people from racial and ethnic minoritized backgrounds, this might not be aligned with their particular goals of care, or their beliefs in their particular culture. For example, some Asian cultures have strong beliefs about not dying in the home. And so if the hospice is not prepared to support the patient in getting set up to move to a nursing home when death is imminent, then they might call 911 and then go to the hospital, and then have to revoke hospice.

So yeah, so I think there might be a situation which people are coming on to hospice and they're already feeling reluctant to forego disease directed treatments, and some hospices will pay for some of these treatments called open access. But in general, it's pretty limited. Yeah, I think that this is a big issue in figuring out how we adapt hospice to a diverse population moving forward.

Male:

It does seem like such an important next step because I'm trying to sort of make sense of the different disenrollment reasons. And the conclusions differ. I mean, whether someone decides this isn't for me, gets back into sort of cultural differences and perceptions around health and healthcare, but also, the hospice initiated one is kind of interesting too because it sort of implies that maybe the diagnosis was off or something. It's totally different drivers, which is maybe where you're going.

Lauren Hunt:

Yeah. I mean, I think there's less information out there around determining prognosis in different populations. Right? So I think physicians are not as good as estimating prognosis in racial minoritized individuals, probably, so that gets some of it. I think there's also potentially issues around using hospice as kind of a backdoor to long-term care, so for people who can't access these supports in other ways, that hospice is being used ... This will get a person an aide in the home when they can't pay for it otherwise, so that might be something that's going on there.

And then I think this question, and this is something that I'm really interested in exploring, is kind of how these markets work, how the hospice markets work and whether racial and ethnic minoritized people are clustered in certain markets, where this is these concerning practices going on in the hospice industry right now. Any advice on how to figure that out, I'll take it.

Male:

No, there's a ton of stuff we could do. My head's kind of spinning with all the potential research projects. I'm also trying to sort of triangulate sort of the little bit that I know about sort of end of life preferences and things around differences by race and ethnicity. I'm trying to make sense of that. I know there's some preferences towards more aggressive or less aggressive care that I think might explain enrollment. But I wonder how much it sort of starts to tie into this disenrollment concept as well. But anyway, it's a really interesting area.

So your analysis focused specifically on hospice enrollees living with dementia. Do you think there's any reason that the findings would be different among just all older adults enrolled in hospice?

Lauren Hunt:

Yeah. So, actually, I think one of the questions you asked earlier was about disenrollment overall. So people with dementia have the highest rates of disenrollment overall, so it's generally around 15% to 20% versus the overall hospice population's probably around 10% to 15%. And among people with cancer, it's even lower. It's 5% to 10%. So most people with cancer come on once they stop disease directed treatments. They have a pretty good idea that they're going to live three to six months, although that is starting to change a little bit with the new treatments for cancer coming out.

So I think my guess is that probably the patterns of disparities would be similar, is my guess from hospice agency, from comparing the different quality levels of the hospice agencies, but that you'd see kind of different rates of disenrollment, and then different reasons for disenrollment. And then the other kind of interesting thing that happens is that in addition to clustering and segregation of people from racial and ethnic minoritized backgrounds, we also see clustering of dementia patients into certain hospices. And this also varies regionally. And there are kind of different patterns around the country. In the Northeast, there's generally higher concentration of higher quality hospices, and they tend to serve more cancer patients. So I think that's a really interesting question that hopefully I will get answered [inaudible 00:34:44].

Donovan Maust:

Yeah. We keep coming up with [inaudible 00:34:45] for you to look at, Lauren.

Lauren Hunt:

Yeah.

Donovan Maust:

We've covered a lot of ground. But is there anything we haven't talked about or addressed that you think for folks who are kind of learning about this space for the first time, anything we missed out that we should've covered?

Lauren Hunt:

Yeah. No, I think this has been a really great discussion. I mean, I think that it's just critical that we figure out how to better support all people at end of life when they're really at their most vulnerable place and time in their entire life. So I'm just really invested in trying to make this better, and hopefully can get other people excited about doing that as well.

Donovan Maust:

Well, Lauren, thank you so much for joining us. And thanks to all of you who listened in.

Male:

If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple Podcasts, Spotify, and SoundCloud, as well as directly from us at capra.med.umich.edu, where a full transcript of this episode is also available. On our website, you'll also find links to our seminar series and data products we've created for dementia research. Music and engineering for this podcast was provided by Dan Langa. More information available at www.danlanga.com. Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at uofmhealth.org/podcast. Support for this podcast comes from the National Institute on Aging at the National Institutes of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan. The views expressed in this podcast do not necessarily represent the views of the NIH or the University of Michigan. Thanks for joining us, and we'll be back soon.