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Two major shifts are transforming the landscape of hospice.

First, private equity firms are gobbling up hospices.  As Melissa Aldridge, a health services researcher and former banker explains, we should be very concerned.  Private equity firms try to turn companies as profitable as possible within 3-5 years.  Thus, they have little in the way of long term vision for hospices, instead focused on cutting costs and maximizing profits. 

Second, Hospice was originally designed for patients with advanced cancer, but the fastest growing admitting diagnosis is dementia.  People with dementia make up about half of hospice admissions.  And yet, we know little about the clinical experience of people with dementia in hospice.  Krista Harrison found, to her surprise, that caregivers of people with dementia who died rated hospice as well as similar patients without dementia who died on hospice.  And yet, disenrollment from hospice, either due to patient/family revoking the benefit or stabilization of illness (extended prognosis) is remarkably high for people with dementia among some hospices.  In fact, as Lauren Hunt found, the average likelihood that a person will be disenrolled from one hospice vs. another is two. In other words, which hospice you enroll in has a tremendous influence on whether you’re going to be disenrolled from hospice, which often feels to patients and families like being expelled.

And I had a blast playing Take the Money and Run!


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

Alex: This is Alex Smith.

Eric: Alex, we have a super special today. We’ve got a hospice super special.

Alex: We have a hospice super special day. We are delighted to welcome Melissa Aldridge to the GeriPal Podcast. Melissa is a Health Services Researcher. She’s Professor and Vice Chair for Research at the Mount Sinai School of Medicine, Department of Geriatrics and Palliative Medicine. Welcome to the GeriPal Podcast, Melissa.

Melissa: Thank you. Great to be here.

Alex: We’re delighted to welcome back to the GeriPal podcast, Krista Harrison, who is a Health Policy Researcher, an Associate Professor of Medicine, UCSF Division of Geriatrics. Welcome back to the GeriPal Podcast, Krista.

Krista: Always a pleasure. Thank you.

Alex: We’re delighted to welcome back Lauren Hunt, who is a Hospice and Palliative Care Nurse Researcher, an Assistant Professor of Nursing at UCSF. Welcome back to the GeriPal Podcast, Lauren.

Lauren: Hi. Great to be here. Thanks for having me.

Eric: We have a smorgasbord, if you will, of papers that got published recently around hospice, and that’s why we’re calling it a hospice super special. We’re going to be talking about each one of these papers. But before we do, I think somebody has a song request. Is it you, Melissa?

Melissa: It’s me. Yes, it is. I would like to request Take the Money and Run by the Steve Miller Band. Can you do it?

Alex: Good choice. Here we go. (singing)

Eric: Melissa, why did you pick that song?

Melissa: I really wanted to see if he could hit the high notes right at the end [laughter]. It was a challenge. I thought it went well with some of the themes around the private equity paper that our team has been discussing. That was the rationale for that theme.

Eric: We have three papers to talk about. The first one we’re going to be talking about is, Melissa wrote a paper in JAMA IM, I believe, a little over a year ago on the Hospice Tax Status and Ownership Matters of Patients and Families. Melissa, do you want to describe that paper?

Melissa: Sure. It was actually a commentary. I had looked at a research article that had recently evaluated the prevalence of private equity transactions in the hospice market and noted that there was a pretty substantial uptick in the past decade, and really over the course of say around 2015 to 2019. The commentary was around, why do we care about that and what are the potential issues?

Eric: In that paper, you saw a pretty impressive, or that paper showed a pretty impressive increase in private equity in hospice. Why should we care?

Melissa: Well, we have a long history of looking at some of the evidence around differences in patient populations and care processes and outcome for patients based on hospice ownership, comparing for-profit and nonprofit hospices. That trajectory was in increase from 2000 to say, 2010. And now about two thirds of the market is for-profit hospices.

Private equity is newer and it’s obviously for-profit, and potentially the incentives that we see for differences in for-profit and nonprofit could be exacerbated with private equity ownership. It’s something we need to pay attention to, which is what we were talking about in the article.

Eric: Whenever I hear about for-profit, non-for-profit, the differences between them, mostly everybody turns to, I think, your 2014 paper looking at the differences between for-profit and non-for-profit. What do we know about the differences between the two types of organizations when we’re thinking about hospice care?

Melissa: I think there’s two categories of differences. One is the patient population and a targeting of for-profit hospices around patients who are going to be potentially less costly and more profitable. Around things like patients who are potentially going to stay in hospice longer, like patients with dementia, patients who are not dying with cancer. By setting, so patients who are living in places like nursing homes and assisted living facilities, where it’s easier to visit very quickly patient to patient, as opposed to home-based care for people say in rural areas.

And then secondly, around some of our quality measures, there’s been differences found in multiple papers by many teams around hospice disenrollment, higher rates of hospice disenrollment in for-profit hospices, and higher rates of healthcare utilization. For-profit hospices having much higher rates of their patients visiting the emergency department and being hospitalized, in addition to disenrollment. There’s also been some differences in things like staffing. Really, the inputs into care and some of the outcomes that patients have experienced.

Eric: If I remember your article correctly, there was maybe some better things with for-profits, like more community engagement with low-income communities and more engagement with minority communities.

Melissa: I don’t know how to explain that or what that means. I do think the growth of for-profit hospice, so around 2000 to 2010, was beneficial in terms of access. I think for-profit entities have access to capital that they can expand into markets rapidly. I think in that way, what we see with more than half of Medicare beneficiaries dying under the care of a hospice, that expansion was potentially a good thing.

Alex: Can I ask a question? Melissa, were you a banker before you did research?

Melissa: I was, actually, so I feel like I’m coming full circle here and trying to understand what’s going on from the financial perspective. Yes.

Alex: It really brings it together. Could you explain for our listeners what private equity is? And to me, because I don’t know?

Melissa: It’s a broad term that can mean a number of things. It’s basically an entity or group that takes outside investment money and pulls it together, and then looks across the market at targeted investments in other companies that’s not publicly traded. It’s not like you’re buying stock on the stock exchange in these companies. You’re just privately going to them and making investments of various percent ownership.

Alex: Is there a reason to be concerned particularly about private equity as opposed to other for-profit entities?

Melissa: One of the main reasons to be concerned is that because of that structure where you’re taking outside investments and looking around for investment opportunities, private equity tends to have a period of time of say, three to five years, where they want to invest in something, change the operations, make money, and then sell it at a profit. And then that profit goes back to the people who invested the money in you.

As opposed to, well, nonprofit ownership or even ownership on a publicly traded company, which can be a longer term investment, these are short term investments. You’re really looking to get in, make money, and get out. It really takes that for-profit motive and squishes the timeframe in which you’re trying to make it.

Alex: Very helpful. Thank you.

Eric: It magnifies it?

Melissa: Yeah. Take the money and run, right? Take the money and run. That’s why it’s a perfect song. [laughter]

Alex: It is a perfect song.

Eric: But in some ways, incentives for non-for-profits, for-profits are not … A non-for-profit also has to worry about bottom lines. Non-for-profit doesn’t mean that people in that non-for-profit aren’t making a boatload of money, because you can still get paid a lot in a nonprofit and get big bonuses. There is a push for picking the right patients, making that bottom line, increasing the size, so it doesn’t matter that much.

Melissa: It’s definitely true that that’s the incentive under nonprofit and for-profit. They both have to make money. There’s a difference in terms of where that money goes. Of course, whether it goes back to outside ownership or whether it’s plowed back into the operations. But I think one of the reasons here that it’s most concerning is, we have very little regulation around hospice, we have very little transparency, and we have very limited quality metrics. Even if there’s a small difference in the kind of incentive to make money, it could translate into some pretty large differences for patients and families.

Eric: Yeah. I’m just thinking recently, we’ve had some very hard cases that we’ve dealt with where honestly, right now, the one that we’re having the hardest time with is a patient where it’s currently being followed by a large for-profit agency. They’re doing things that I would never imagine most hospices doing; seeing the patient twice a day, every day, the amount of effort that they’re putting into it.

I’m guessing there’s also a lot heterogeneity. When we look at some of these metrics about which patients they’re seeing, how they’re seeing, there’s probably a lot of heterogeneity on locations, offices, and also different hospice agencies. Yeah. How do you think about that?

Melissa: There definitely is, and I think one of the things with the type of research that I do and my colleagues here do is that we’re doing large population-based data, looking nationally. We’re looking at averages. There’s always the case that there’s going to be bad actors that are nonprofits, there’s good actors that are for-profits. What we’re looking at are the average tendencies that we’re seeing and trying to understand. Okay. These are the incentives that might play out. And then on average, do they play out?

It’s one of the reasons, one of the things we’ve advocated for is that when you look at the distribution of some of these outcomes, say disenrollment, one of the suggestions is that you should look at outliers and use those as triggers for some of the audits by CMS. In some of our work, looking at the outcomes of the rates of the patient populations who are using the emergency department, if you’re seeing a hospice with more than half of their patients visiting the emergency department, that should be a trigger.

That’s an outlier. Certainly there’s for-profits on the other end of the spectrum. But you can use that kind of variability in the average to really target where CMS should start some more extensive oversight.

Eric: That leads me to Lauren’s paper, talking about disenrollment among hospice patients. Lauren, you specifically looked around dementia patients. Is that right?

Lauren: Yeah. Just before I get into that, I’d just love to piggyback on the question you asked Melissa around this challenging case with this for-profit hospice. Because I think there is a lot of variation in heterogeneity and that was what we were trying to get at in this disenrollment paper. But I think it’s not a blanket statement that all for-profit hospices are bad.

I think that there are some really great for-profit hospices out there that are actually able to provide more services and more open access for patients. That’s actually something that can make it more appealing to patients who are potentially more reluctant to forego curative treatments or don’t have the resources in their home. Anyway, I fully agree that the private equity is really concerning and that we need to be thinking about these things a lot, but I just wanted to make that point.

Eric: Yeah. Let’s turn to your paper, Lauren. It was published in JAGS around disenrollment. Can I ask, before we talk about what you … Why did you do this paper? What motivated you?

Lauren: Yeah. That’s a great question. My interest in this paper and this topic goes back a long time and is based on my clinical experience as a hospice nurse, where I was taking care of what I felt like and what we’ve confirmed with research is about half of my patients. As a nurse case manager in hospice, half of my patients had dementia. Although I saw that hospice was providing a lot of really great quality care for these patients, I also saw a lot of problems. One of the major problems that I saw was this issue around disenrollment.

My patients were getting, we talked about this on our last podcast, getting kicked out of hospice, what I call expelled from hospice. Some people call it graduating from hospice. It goes back to this issue around the hospice model not really being modeled around the needs of people with dementia. It’s really set up as a model to care for people with metastatic cancer. One of the eligibility criteria for a hospice is that you need to have a terminal illness, with a prognosis of less than six months, if the disease runs its likely course. This is something that’s very difficult to determine in people with dementia.

What happens is that they come on, they look like they’re very ill, but then they don’t necessarily die within six months, and it’s very challenging to determine when they will die. They no longer meet criteria for hospice and then they need to get disenrolled. I saw that as a major problem because when people get disenrolled from hospice, they lose all of those interdisciplinary palliative care services that hospice was offering. Nurse case management, social worker case management, medications, medical equipment, a home health aid, all that stuff goes away. I just want to highlight some work.

Stephanie, I think her name is pronounced Wladkowski, she’s at Michigan. She’s done a lot of really great qualitative work, looking at what happens to patients and families after patients with dementia are disenrolled. It’s really a pretty traumatic experience for a lot of patients and families. That’s really what drove my interest in this topic.

Eric: What did you find in the JAGS paper?

Lauren: We really wanted to look at variation and disenrollment for people with dementia. A lot of the things that we were interested in are some of the things driven by some of the issues that Melissa raised around people with dementia, being preferentially enrolled into hospice, because they tend to make more money for the hospices. Because they’re [inaudible 00:18:23] higher, less intensive care and tend to have longer stays. And then this process of disenrollment where people are … There’s concerns that this is an indicator of poor quality for those patients. That hospices might be disenrolling them as a way to increase their profit motivation.

Anyway, so we’re really trying to get at this not only what the patient level predictors are of disenrollment, but trying to get at these larger systems level issues that are going on in the hospice industry right now, around what the hospice provider market is like and how that will affect something like disenrollment in this important population. Basically, what we found was that, so we looked at variation at the hospice provider level and also at the regional level, and also looked at some patient and hospice organizational characteristics that might predict disenrollment.

We are trying to really come up with a measure to quantify how much variation there is. Basically, what it comes down to is that there was a fair amount of hospice to hospice provider variation. The way you can think about it is that if you take the same person, the same average person, same characteristics and move them into a hospice, a different hospice, then their chance of getting disenrolled would double. Basically, there’s a lot of variation amongst hospice providers. And then at the regional level-

Eric: A minute. I’m going to start off with just the variation amongst hospice providers. Because when I look at it, you have a beautiful figure too, and it looks like most hospice providers have disenrollment somewhere around less than 10%. And then all of a sudden, you have this tail at the end, the last 1000 or 600 hospices where all of a sudden, it starts really jumping up.

Lauren: Right. Yeah. I think that this can be useful for the regulation hospice and thinking about our interventions. Do we apply these broader measures that are going to affect all hospices? Or do we really try to go after these outliers, these hospices that have really concerning practices?

Eric: Well, I’d love to open up the door. Is disenrollment though, a bad thing? Is it like an appendicitis? If you don’t take out enough appendices, you’re doing a bad job? Prognostics.

Alex: Wait. Wait. I think what you’re trying to do is, every time you do a CT on somebody with abdominal pain, you’re finding appendicitis, then you’re not doing enough CTS. Because you’re probably missing some. You should be having some CTs that are negative. Is that the analogy?

Eric: Yeah. I guess I was going back to med school where we weren’t doing that many CTs. I’m old, so I was going back to my old school.

Alex: Just take them all out.

Eric: Just take them all out. Yeah.

Lauren: Yeah.

Eric: Because dementia is really hard to prognosticate in. You’re going to get it wrong, and there’s a level of wrongness that we should be okay with.

Lauren: Yeah. I think this is something that I struggled with and Alex was definitely … Melissa, definitely on this journey, the struggle with me as I was thinking about writing up this paper, and what is the right amount of disenrollment? It’s probably not zero, but I’d say a 40% rate for a hospice is probably too high. Where is the level? And then, do we lower everybody? Or do we just really go after these providers with concern?

Eric: Yeah. Some of these look like, like the far end of the spectrum, with 30, 40% disenrollment. That’s high.

Lauren: Yeah. Yeah. Yeah. I think this gets to broader issues around, how do we intervene in this space and tailor the hospice model to the dementia population or not? I think that gets into maybe some of Krista’s findings as well. But there’s implications for increasing access to hospice or loosening up the eligibility criteria, for example. But then, what are the financial implications of that? You might have less disenrollment if you loosen the criteria, but then are you going to have these private equity guys swooping in to try to take advantage of that?

Eric: Things are getting complex.

Krista: Well, one of the things we talk about as we have conversations about this is we’d be having a different conversation if there were alternative models of care. But if hospice is the only real game in town, particularly for people who are receiving care in the home near the end of life, disenrollment creates problems because it leaves people abandoned and having to now reassemble care from a variety of different locations, as opposed to having the ideally one-stop shop of the hospice.

If you think about the impact on families, disenrollment is often a really hard thing. This is particularly when we’re talking about disenrollment where people are kicked off, as opposed to when people choose to leave. It’s because they want to pursue different options or work with a different agency.

Eric: Generally, what I’m understanding from your article, most disenrollment is either prognosis too long or family revokes or patient revokes.

Melissa: The other scenario that exists is just disenrollment because an individual is hospitalized. There’s a cost avoidance aspect to it, too. If you look at that tail, there’s sometimes an individual will call 911, go to the hospital, be disenrolled, the hospice doesn’t have to then pay for that episode. Then they leave and they’re enrolled again. Some people cycle in and out as a cost avoidance is a third aspect. Sorry. Go ahead, Lauren.

Lauren: Oh. In that scenario, that usually falls under this revocation category. Because people, they go to the hospital, then they revoke. But they aren’t really going there to pursue curative treatments. They’re just going there because they weren’t getting the support that they needed in hospice.

Eric: Yeah. All right. Krista, I’m going to turn to you now. Last paper, health affairs, and this one just got published what, two months ago?

Krista: Sounds right, but it’s been a long two months.

Eric: Two months ago. Everything with COVID gets longer.

Alex: Two months and an eternity ago. Yeah.

Eric: You looked at the quality of care for older adults with dementia in the last month of life. Can you tell me, why did you decide to write this paper, or do this study?

Krista: One of the debates in the field for a long time has been when hospice is the big end-of-life game in town in terms of a care model, but it was designed for people with cancer, how well is it extrapolating to people with other diseases or multi-morbidity? Honestly, we went into this expecting, especially given all the work Lauren and others have done around disenrollment, to find that hospice was not serving people with dementia as well as people with other sources of serious illness. But we were pleasantly surprised. It turns out the hospice model is more flexible than we had originally anticipated, at least again, when you’re talking about these national aggregate levels.

Alex: Oh, I was just going to say, if you could, unpack that a little bit more. In your study, you found that people with dementia who were enrolled in hospice rated, what, something similar to those who were enrolled in hospice, but did not have dementia?

Krista: Yeah. We built off the work that Dr. Joan Tino and others have done to develop quality measures in hospice. There’s an after death survey given to all families of former hospice enrollees and some of the nationally representative surveys, including the National Health Aging and Trends Study that we used for this work, have adopted those quality measures for use in their survey. These are the best we have available in terms of understanding what the family’s report about their, and mostly from the patient perspectives experience of the last month of life. It’s particularly anchored in that last month because of recall bias considerations.

It asks questions like, the person who died, did your decedent experience pain at the end of life? If yes, was it more, less, or the right amount of pain management? Those aren’t specific, those aren’t quite accurate, but they’re pretty close. The measures, what we were able to do is use those measures. We created balanced groups of people with dementia that looked pretty similar to people without dementia using propensity score methods. When you looked across the two groups, either the scores were not different, indicating pretty similar experiences at end of life, or the things like the proxies of those enrolled in dementia more often reported care to be excellent compared to good-to-poor.

Alex: The care for people with dementia in hospices as rated by their proxies, usually next of kin, after death was as good and in some cases better than the care provided, or the way they rated care provided for patients who did not have dementia and were enrolled in hospice? That is surprising to me. Because part of this setup was exactly as you said, hospice is a model that was designed around patients with cancer and is best suited to meet their needs. How do you reconcile those two, the finding and your hypothesis?

Krista: Well, again, when you think about the alternatives that are out there, particularly on a national basis, they are not the same. But the other thing is this dataset is limited. We weren’t able to look at things like, how does ownership status play into the kind of aggregate levels that we were looking at. How does this change on a regional basis? There’s still more work to be done, but it tells us that it is helpful to have a model of care at end of life, where you get 24/7 access to care wherever you’re calling home. Melissa?

Melissa: I think that’s exactly right. I think one of the things that you described is when you say it was originally designed around a cancer paradigm, that’s around access to it. That’s around this six-month prognosis and you can only get in if it’s that, and that works better for cancer. But what we found in this paper is, once you’re in, you’re around that barrier that really was cancer designed, it works. This is a population that needs palliative care, probably different types once you are in the home working, but it works for that group once you’re in.

Alex: Yeah. I guess a key point for me is it does work, like you’re saying. That doesn’t mean that it couldn’t be better, and that it sure would’ve been helpful way before the patients enrolled in hospice, which may have been long before the last six months of life. Kristen, in this paper, you also looked at people with dementia who didn’t enroll in hospice. What about their experience?

Krista: Well, it was pretty similar. The big difference was whether or not you enrolled in hospice, and the end of life experience was pretty similar if you enrolled in hospice, whether or not you had dementia versus those who didn’t enroll in hospice. Again, that was a little bit not what we expected to find.

Eric: I’m trying to piece all of this together. I think it goes back to Lauren. Where do we go with all of this information? How do we make it better. Both from a payment standpoint, who is owning it, how much control do we even have? And then from a dementia and multiple different diagnoses, how much should hospice look the same for everyone, or tailored to the patient or the diagnosis that we’re dealing with? I’m going to turn to each one of you. Melissa, what are your thoughts on that? I threw out a lot. Just kind of-

Melissa: Yeah. There’s a lot out there. I think it’s something that there’s obviously a high demand for. It’s still growing rapidly. People across all diagnoses want hospice care. It’s obviously profitable. On the supply side, you have lots. You have for-profit coming in. You have private equity coming in. You have chains growing. It’s like these two really quickly growing things that are matching up. It’s a matter of putting some guardrails around it, so that then when Medicare keeps paying for this, they know what they’re paying for and they know how to identify outliers in it.

For people with dementia, it’s also the fastest growing diagnostic group, so there’s clearly a need. And then they’re staying for long periods of time. I think instead of cracking down on that, we need to consider what else they need before hospice. There needs to be a whole other model, and there’s a lot of people doing trials and intervention work, which we need to try to address that piece of it. There’s really a lot of moving parts and getting people supply, demand, and then maybe some care before hospice for that group. I feel like it’s one of the most important trends.

Eric: What do you think?

Lauren: Yeah, I agree. I think there just needs to be, in the case of people with dementia, that just better care along the trajectory of illness. Starting at the beginning stages and as people decline, and then into the end of life, which just really doesn’t exist at this point. I just wish there was some more experimentation that was going on with thinking about different payment models.

Could you keep it within hospice and then have a different kind of tier of payment for people who tend to have a longer prognosis? Let’s see how that works and just cycling through these different models to try to figure out some. Just broadening it. It’s just a very, very narrow approach right now.

Alex: Krista, how do you put it together? What’s your vision at this point in terms of what more we need to study in order to refine the hospice benefit to meet the needs of people with dementia? What more would you need to regulate because of this growing presence of private equity and tremendous variation that the hospice you choose could have a wide impact on whether you’re disenrolled two-to-one odds? What’s your sense of the overall picture here?

Krista: I feel like I’m always of two minds. The qualitative work that I’ve done or been involved with says that people with dementia and their families, the people who care for them, they have wide ranging needs and it escalates. It waxes and it wanes. It would be great to have a one-stop shop because life is complicated enough when you’re trying to live in and enjoy the time you have left, and adapt to all the changes that are happening.

There’s a lot of geriatric needs. There’s a lot of palliative care needs. For those people who remain at home, there’s just regular home-making life stuff that you need help with. It would be really nice to have models of care that’ll let you titrate up as you need additional support that changes the payment mechanism in the background as you go. But on the other hand, I adore hospice. The original mission of hospice was so great.

It comes from a group of volunteers trying to do the right thing based on what their patients and their communities needed. I really want that ethos to be reinforced and supported. I have a lot of concerns about the ways that we have to think about costs when it comes to doing the right thing and supporting people at end of life. It never feels like we’re designing the system that we ourselves want to be using when we are near the end.

Alex: Well said.

Eric: Well, I was reading about the history of hospice not too long ago. Going back to the late ’70s, early ’80s, a lot of the concern around it was the same concerns around cost. And comparing it to, is it going to be the same thing that we’re seeing in nursing homes and everything that’s going on around? Trivia. 1983, a hospice agency started, now one of the largest in the US, by Don Gaetz. Anybody know what hospice agency nonprofit it started?

Krista: It was a nonprofit?

Eric: Yeah. It was … Oh, I’m blanking on the name.

Krista: This is not good trivia. [laughter]

Alex: You can’t do trivia if you do not know the answer. [laughter]

Eric: I do. It’s … Oh fudge. Anybody know who the son of Don Gaetz is?

Krista: I only know East Coast things. I’m sorry.

Eric: The Senator?

Krista: Matt Gaetz?

Melissa: Oh yeah. Yeah. Yeah. Didn’t his hospice just sell also for a ton of money?

Alex: Mm-hmm.

Eric: Vitas was started in 1983 by Matt Gaetz’s dad.

Krista: But Vitas is for-profit.

Alex: It’s for-profit.

Eric: It started off nonprofit.

Alex: Oh.

Eric: And then it became for-profit, and it was sold to Chemed. Do you know what the other thing Chemed owns?

Alex: Roto-Rooter.

Eric: Roto-Rooter.

Melissa: Ah.

Lauren: Roto-Rooter.

Eric: Fascinating what happens.

Melissa: You’re right. Yes.

Eric: Actually, the hospice agency that’s doing an amazing job with one of our patients is Vitas. The hardest thing for me is to think about, how do our patients choose these different hospices and how do I help them pick based on quality? It’s impossible. Part of it is, it feels like every week I’m on service, there’s a new hospice agency that pops up that I’ve never heard of before.

Alex: Well, yes. Although California, didn’t they put a law into effect saying they will issue no new hospice licenses? That was 2021, so it was relatively recent. Probably prior to that, there was a new hospice.

Lauren: Yeah. Well, speaking of hospice trivia, that’s one of my favorite hospice stories is this. Going on in Southern California where there are literally 1000 new hospices in the LA region that opened in five years, and then there’s been this huge crackdown by the FBI. And then this one guy who was one of the owners of the hospice, also owned various enterprises, including a limo service. He is now at large. He fled the country.

Alex: Oh boy.

Eric: I think it’s really hard from a hospital standpoint, because we don’t want to give preference to one hospice over the other. But we also do want to help families in deciding between the different hospice agencies, and there’s not a lot of great ways to help them make that decision.

Krista: Well, and not all hospices have these training modules that are specific to people with dementia, per one of the themes of what we’ve been discussing. Depending on what your particular needs are, a local hospice may or may not have that additional support and training that is available across all their staffs or all their team. The huge variation works against you here.

Eric: We’re coming in the end. We’re going to do the magic wand question. Each of you can do one thing, make one change.

Alex: Before we do magic wand, can I ask another, one more question?

Eric: You can ask. That gives them a little bit of time to think about it, one change that they would make to hospice.

Alex: Think about that. I want to ask about hospice quality metrics, which I know the three of you are familiar with. I know Lauren included that in her study. Are they any good in terms of help? Eric is saying, how do we help families choose which hospice? Can they look to these quality metrics? They’re relatively new. Thoughts on them. Are they usable?

Lauren: Well, I’ll take a stab at this because I’ve been diving into this a little bit for a paper that I think all four of us are involved in here. Yeah. It’s been quite a rabbit hole to go down and trying to understand these quality metrics. But one of the things that we have found is that a lot of the hospices are actually not rated. One of the biggest concerns that I have is around these hospices that aren’t required to participate in the Hospice Quality Reporting Program, which is actually a substantial number of hospices. Those hospices just don’t have any ratings at all.

What we found in the study that we’re working on now is that those hospices are the ones that had the really, really high disenrollment rates. It is. It’s really hard to help patients and families figure out what they should do. If they go to the Care Compare website and you look at these ratings, what do you tell them about the ones that don’t have a rating? I would be very concerned about going to one of those hospices.

Yeah. I think there’s a lot of work to be done there in trying to figure out, how do we measure hospice quality and report it in a way that patients and families and providers can trust? Yeah.

Melissa: Just to add to that, for me, I think one of the most compelling quality measures or at least aspects of utilization that I like to see is the visit data. I think that was a huge advancement when you could see within the claims the amount of visits that were happening, and the work that was done on variation in visits in the last week of life and the hospices where a certain percent of patients had no visits in the last week of life. That’s one of those, I think, advancements in quality metrics and CMS being able to see what they’re paying for. I think that was a huge plus and something that we will continue to use going forward.

Krista: One of the things I want to remind us all is hospice is pretty new to the quality metric game. They only started having to publicly report these in 2016. Some of the quality measures they started out with were process measures that I think helped build infrastructure or build rationale for infrastructure.

But a lot of the smaller organizations have very different resource constraints, compared to some of the big organizations in terms of ability to add sophisticated ways to capture the quality measures that are most useful for them as clinicians, as in organizations, never mind what CMS actually requires reporting.

We’ve seen some rapid changes in what’s been required to be reported and retiring of some process measures. I hope that we continue to evolve those quality measures, as Melissa said, to the things that really allow us to see the things that make a difference for patients and families. And help identify outliers.

Eric: Okay. You got it. I’ll have one wand wish. What would that be for a change in hospice, Melissa?

Melissa: I would say transparency. At this point, we are trying to move forward with studying the private equity and hospice. It’s just really tough to understand what’s going on. I think transparency and ownership, such that also changes in ownership can be like trigger audits. All of those things require transparency. That would be my wand. Makes my life easier too, in our team and the work we’re trying to do. That would be ideal.

Eric: Lauren?

Lauren: I think mine would be what I was talking about a little bit earlier with this, more opportunities for experimentation with these alternative models. And just try it out, throw it out, figure out what works on a faster scale.

Eric: Yeah. What works, it sounds like not how much extra money one of these private equity firms makes. Because that could be a measure of success. It’s really patient, family metrics. Krista?

Krista: That was going to be what I was going to say, that I want to get rid of the focus on-

Eric: You’re going to invest in private equity so you can make a lot of money? That’s what you’re going to-

Krista: Nope. Nope. Nope. Nope. Nope. Nope. Getting me in trouble here. No, I’d like to get rid of the focus on minimizing costs and maximizing profits or margins. So that we could instead refocus on, what is the actual experience of patients and families? And how do we most creatively and effectively meet the needs of the people who are dying and the people who love them?

Eric: But how would you do that?

Krista: Well, you just gave me a magic wand! [laughter]

Eric: Right. [laughter]

Alex: Right. She waved her magic wand.

Eric: Dang you, magic wand and your magical abilities. [laughter] All right. I’m going to use my magic wand for Alex to play a little bit more of Take the Money and Run.

Alex: (singing)

Eric: Melissa, Krista, and Lauren, thank you very much.

Melissa: Thank you.

Krista: Thanks for having us.

Lauren: Thanks.

Eric: It’s been a blast having you. Thank you, all of our listeners, and Archstone Foundation for your continued support.

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