Implementing Palliative Care in Nursing Homes: A Podcast wtih Connie Cole, Kathleen Unroe, and Cari Levy

Eric 00:22

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:41

This is Alex Smith.

Eric 00:42

And Alex, we have three amazing guests to talk about palliative care in nursing home settings. Who do we have on the podcast with us today?

Alex 00:49

We are delighted to welcome back Kathleen Unroe, who is a geriatrician and palliative care doc and researcher and a professor of medicine at Indian University and founder and CEO of Probari. Kathleen, welcome back to the GeriPal Podcast.

Kathleen 01:04

Thank you.

Alex 01:05

And we’re delighted to welcome Cari Levy, who is a geriatrician, palliative care doc, researcher, and professor of medicine at the University of Colorado. Cari, welcome to the GeriPal Podcast.

Cari 01:15

Thank you. Very happy to be here.

Alex 01:17

And we’re delighted to welcome Connie Cole, who is a nurse, researcher, and assistant professor at the University of Colorado. Connie, welcome to the GeriPal Podcast.

Connie 01:26

Thank you for having me.

Eric 01:27

So we got a lot to talk about. Palliative care, nursing home settings, from specialty to primary, palliative care to hospice, the barriers, what’s working, the solutions. But before we do, I think someone has a song request for Alex.

Cari 01:42

I would like to request Hallelujah, one of my favorite songs. And I love hearing you sing, and so it’s an excuse to have you sing a beautiful song. And it’s, I think, a very uplifting song. And I’m so pleased with Connie and that she’s doing so well, and so it’s a celebration of her, too.

Eric 02:00

Okay, I got a question for you. Who is your favorite singer of the song?

Cari 02:05

Leonard Cohen.

Eric 02:06

Leonard Cohen. Okay.

Alex 02:09

Well, oops. I learned the Jeff Buckley version.

Cari 02:13

Oh, that’s okay. No problem.

Alex 02:17

I won’t do my growl. I won’t try to change it up quickly to do my growl and Leonard Cohen voice version. All right, here’s a little bit.

Alex 02:32

(singing)

Eric 03:19

That was wonderful, Alex.

Alex 03:21

Beautiful, beautiful song. Thank you so much.

Eric 03:25

So we have a lot to talk about, but I’m wondering if we can kind of take a big step back and just talk about the patient population that’s in nursing homes. Like, do they have palliative care needs? And if so, what do we think they are? Anyone who want to take that first gander? That’s a big question.

Kathleen 03:47

I think any of us who’ve spent any time in nursing homes have spent time working in a nursing home setting, have visited, had family members in nursing homes and looked around and seen the population there. The reason that you’re in a nursing home is because you have some mix of serious illness and multimorbidity, usually functional impairments.

You need help with very basic activities and getting to the bathroom, getting dressed and memory issues, cognitive impairment. And so as you think about the conditions that mean that you need care and support in a nursing home, it’s easy to see why many of us feel that palliative care, there are a lot of palliative care needs of nursing home residents just because of the nature of the conditions and reasons that got you there.

Alex 04:43

When I think about like We Are the GeriPal podcast and you think about geriatric palliative care, like you think nursing homes ought to be the paradigmatic location, an example, an exemplar of like the combination of geriatrics and palliative care. And yet it’s been so hard to integrate palliative care into nursing homes. Why is that? Cari? Connie, why is that?

Cari 05:08

Well, what I was going to say right before you mentioned that is that when I first started working in nursing homes, I was shocked by the focus on rehab. Of course, rehab is an important piece, but the majority of what’s being done, unless you’re exclusively a rehab facility, is juri palliative care. Right. And so it was always a bit of a frustration. And that’s why I got started in the area, because my hope was to equip those who are already practicing in that environment with the primary palliative care skills and frankly, primary geriatric skills as well.

And you see the need. And so I do think it might be shifting a bit where people recognize the importance of this environment for care as we all have more and more of our loved ones and our patients in this environment for longer term care. So I think because of the financial pull. There’s always been this focus on rehabilitation. Uh, and my hope is that, as you explain, this is a place where you do the final phase of life really, really well. It should be. It should be that.

Eric 06:14

Connie Cascio, how did you get interested in this as a subject?

Connie 06:18

So, I’ve been a clinician working in the nursing home since back in the 80s, and I saw a lot of patients that really needed palliative care. And I was, as I was getting ready to go to grad school.

Eric 06:30

And can I ask what. What were you seeing when you saw that need for palliative care? What did that look like to you?

Connie 06:35

Well, so as I was getting ready for grad school and trying to figure out what to study, I had one patient who had been admitted to the nursing home under hospice. She was expected to die in the next couple days, but she actually got better and eventually they call it graduated from hospice. I’m not sure that’s the best term to use, but she spent over six months on hospice. She improved. So eventually they took her off of hospice, and she had a lot of pain.

Her hands, her feet. She had some really severe neuropathy, and it affected her so much. She was so depressed. And so I tried to get her actually to pain management, and I couldn’t. Pain management wouldn’t come to the facility, and she was bedbound. So it took us a long time to be able to get her pain under control. And so it really got me interested in how we improve symptom management. Not just pain, but symptom management, then for people that are in a nursing home and that. That can’t go out for specialty care all the time, like pain management. So we see a lot of problems with symptom management, a lot of family conflict.

Eric 07:41

And what I’m hearing as far as needs is I think half of the nursing home population has a type of dementia. Cognitive impairment.

Kathleen 07:49

Yes.

Eric 07:50

Alex, I’m going to go way back in your memory bank. Alex actually was a. I think senior author. Anne Kelly was a first author, I believe, of hospice or not. Nursing home, length of stay, I think it was like back in 2010, at the end of life. Do you remember what that found, Alex? Let’s see if I can trigger Alexis.

Alex 08:10

They were pretty short in nursing homes, so most people think, oh, I got to save in case I have to go into a nursing home. And I’m going to be in there for a long time. And there’s like that long tail of some people who are in there. But among people who die in nursing homes, the length of stay was actually short.

Eric 08:24

Now that 5 months median like to stay 5 months the way the mean. Wait, the, yeah, median was five months of the mean, I think was like 13 or somewhere on there.

Alex 08:35

And dear listeners, this is ancient history. So I’m sure there’s been some more recent data or somebody out there should study it.

Eric 08:41

Do we know of any other recent data out there? Prognosis, length of stay for newly admitted or decedents of long term care? Does that sound about right to y’ all?

Connie 08:51

I think the most recent I’ve seen is that they generally most don’t live throughout a year.

Eric 08:58

Yeah, yeah.

Connie 08:59

A third die within the first year.

Cari 09:01

And I think right now the, you know, the trend is assisted living and assisted living facilities are doing a lot of end of life care, interestingly enough. And so I think there’s over time a shift for fewer people to go to a nursing home for that level of care.

Eric 09:17

I always think about the assisted living facility is, it’s like the rich person’s nursing home where, okay, does that seem like a reasonable short.

Kathleen 09:28

Nursing homes are a safety net, right? So nursing homes are covered by Medicaid and assisted living is only covered by Medicaid in some circumstances and some states. And there can be a waiting list. So yes, the population in assisted living is more likely to be self pay. It is intended to be a continuum of care. And assisted living doesn’t offer the same level of medical supportive services as nursing homes. And so if someone with increasing needs is staying in that setting, they’re likely bringing in additional support, potentially through hospice.

And there has been, there is a lot of use of hospice and assistance, assisted living, but also potentially privately hiring aid care as well. But to come back to just nursing homes, when you think about what a nursing home is and the range of people that they take care of, you can see why it’s so tricky to think about how do we get the right services in there. So it’s, you know, nursing homes are part of the healthcare sector, but they’re also part of the social care sector in the same building. If you have 100 beds in the building, 20 of them today might be rehabbed people who are there. And I think the median length of stay in a facility for rehab is around 17 days, something like that. And so they’re in there for a very short time, couple weeks, get a little bit stronger and transition home after a hospitalization. Those other 80 people are there for real varying lengths of stay, but they’re there for long term. Support supportive care and end of life care for as long as that might be.

So it’s just, it’s sort of inherently challenging, this system that we’ve built and we’ve created in the United States to think about all the right mix of services that you need to get in there. But Connie, your point about how you wanted someone to come there, right. That services need to be in the building, I think is an important one to talk about because people in nurses nursing homes do have a lot of medical issues. And so they’re going out to see a cardiologist. You know, they’re going out to see, you know, you know, potentially another specialist or a surgeon. But we, we do a lot of, a lot of care in the facility. And so we do have consultants who come in the building. And you want to talk about that, like, kind of what we’re trying to do in the facility, what kind of skills we need to have or we need to bring into the facility.

Eric 12:01

Well, I was, Was that a question for someone or is that.

Kathleen 12:03

Oh, I was thinking. I was kind of throwing it, Connie. I don’t know. I just, I keep thinking about your resident and all those days, right, you described all those days where you were trying to, you know, you were working with the team in the building, trying to get this woman support, and she was suffering, she was in pain. And so it just, it’s, it’s. There are some services that are so important, we need to bring them in house.

Eric 12:26

Connie, you practice in nursing homes. Does, do people act. Do specialists actually go into nursing homes?

Connie 12:33

Some specialists do. So hospice I consider a specialty. And they come into nursing home. And you do have like podiatry that comes in, some psychiatric services come into the nursing home. So we. You do see some specialists come into care.

Kathleen 12:46

Wound care. Yeah. And Jerry, Psych. Yeah.

Connie 12:49

As far as, like a cardiologist. No, you do see palliative care. So we do have like palliative care through home health agencies that will come in and see patients.

Eric 12:59

And when you say palliative care, what does that look like? Is that like a palliative care trained doctor, np, a pharmacist, social worker? Like, what does that part look like?

Connie 13:10

So generally what, what I see, very rural, is a nurse practitioner that’s out of our local home health and hospice agency that is palliative care certified. And usually it’s simply for a consultation. It usually isn’t for continuing palliative care services. So usually they’ll make recommendations, maybe some medication adjustments or something like that, and then the provider that’s caring for them in house will take over from there.

Cari 13:37

The idea there is they already have a social worker in the facility. Right. So they’ve got support services available within the facility. So the palliative care service doesn’t necessarily need to provide those potentially.

Eric 13:49

Right. Like there is something to a palliative care trained social worker. I mean, it’s like they already have a doctor. Do they need a palliative care doctor, nurse practitioner? If they already have a nurse practitioner or doctor in the nursing home, pay for that, though.

Kathleen 14:03

I mean, back to Cari’s, you know, what Cari was talking about, about financial barriers to palliative care services in the nursing home setting. I don’t know of codes that when you think of the team approach to palliative care, NPs and MDs can bill Medicare for the same codes that we use for primary care, EM codes, but I don’t know of codes that the other members of the team can use in nursing homes.

Eric 14:32

So there’s financial disincentives for interdisciplinary palliative care teams. What do we know about. Go ahead, Alex.

Alex 14:39

Well, I guess I beg the question, like, to what extent do we need specialized palliative care in the nursing homes as opposed to building up the primary palliative care skills of the providers who are already in the nursing homes?

Cari 14:55

Connie has thought a lot about that.

Alex 14:59

What do you think? I mean, there’s a workforce shortage of palliative care providers. We can’t possibly provide enough care to all people with serious illness. And if we take on all nursing home residents or even just those who are most seriously ill, I don’t think we’d have enough. I mean, how do we make this work?

Connie 15:19

I think we need both. So I do think that we need to make the case for primary palliative care in nursing homes and that we need to improve the ability of the providers that are there to provide basic palliative care. So basic pain management goals of care conversations. But I do think there is still room where we need specialist palliative care. There’s some, maybe some complex situations with family that takes some navigating around. And I could foresee conversations around maybe palliative sedation that a primary care provider would not be comfortable with at all. So I think the line is we need to figure out where that falls and how we differentiate between those different needs.

Cari 16:04

And some of the work Connie’s doing is to try to figure out who are those people that really would benefit from specialty palliative care.

Kathleen 16:10

Yeah.

Eric 16:10

Well, I want to talk about that, but before, before we jump into, like, what does that process of rules look like and how can we improve it? Do we have any data on, like, how many nursing homes have specialty palliative care access, use of hospice in nursing homes, anything like that?

Connie 16:32

I think what we have is a little, a little dated. But Kathleen, you know, I’ll let you jump in here too. But since COVID things have changed a little bit in the nursing home.

Kathleen 16:41

And this is a trickier question than it should be. And there, you know, so there’s 16,000 nursing homes. Almost all of them have hospice contracts. And, you know, some, some relationship with hospice, some might not do many referrals at all to hospice. Some will have stronger relationships with hospice. So that part we know and I.

Eric 17:06

Think like almost 50% of nursing home decedents utilize hospice, and that number has grown over the last two decades. Does that sound about right to you too? Like, yeah, utilization of hospice has increased pretty well. What about specialty palliative care? Is that a black box?

Kathleen 17:26

It’s, it’s, there’s some work by, I mean, I’m thinking of Susan Miller’s work that’s tried to identify palliative care providers and then see if they’re billing in the nursing home setting of care to characterize this. But it’s actually difficult to tell because there are different ways that people deliver palliative care in the nursing home setting. And you know, Connie, I think you highlighted one where a nurse practitioner coming from a home health agency, some hospices are providing non hospice palliative care consults in the same nursing home where they have hospice residents. But I think that it is happening, though, and it’s not well characterized, but it is happening.

And that’s some of what kind of your work has tried to capture, is trying to understand how this is working now. Like trying to put, because it’s just there’s what’s happening in practice and our research and the science behind it and trying to understand what’s happening now, where the gaps are and how we can move forward in a more structured way. But you’ve talked to people who are doing palliative care consults right now and I think have learned a lot about what this looks like in practice in terms of referral processes. And you’ve talked to some nurse practitioners, haven’t you, working in this setting?

Connie 18:52

Yeah, so I did, I did actually a series of qualitative interviews talking to staff and nurse practitioners that work in this setting and that work in hospice and palliative care. And it is Difficult. There isn’t really a standardized method for when they need palliative care or when they need hospice. And what that even looks like from one nursing facility, a palliative care program may look completely different to a palliative care program in another facility. Yeah.

Eric 19:25

And so you have two papers that came out, one in JAGS on identifying palliative care needs and another one in Journal of Applied Gerontology, looking at that referral process. And what does that referral process look like? Can you describe that one, that referral process to palliative care, what you learn from that qualitative data?

Connie 19:46

Yeah. So in that one, we interviewed 17 providers and nursing home staff to try and figure out what that referral process actually looked like. And what we found was it was pretty much a four step process. And first was we had to identify which patients or which residents would benefit from palliative care and how’d they do that. And a lot of times they weren’t doing that. So the staff weren’t. They weren’t looking. A lot of times the nurse practitioners indicated that the staff were very task focused. And in the staff defense, they have a lot that they’re trying to do. You know, they’re trying to give medication to a number of patients. And the staffing shortages in nursing home have really gotten kind of crazy. So they were a lot of preoccupied with other tasks, but clinical gestalt.

Kathleen 20:36

Right. Connie, it wasn’t a structured process when they do identify residents. It was, you know, it wasn’t clear criteria. It didn’t seem like from.

Eric 20:50

So there’s no structured criteria that they’re using. It was just I, you know, feels like the right type of patient needed.

Cari 20:58

A care discussion or. Right. There was a general sense they were declining. Sorry, Connie, go ahead.

Connie 21:05

What’s right? I was going to say that even some of them that I interviewed didn’t know there was a difference between palliative care and hospice. So they related the two and thought that they needed, you know, the six month remaining in their lifespan before they would refer them. And there was some misinformation there.

Eric 21:23

And that kind of goes to your JAGS article where you looked at the nursing home palliative care needs, you know, goals of care, support, uncontrolled symptoms, serious illness, global indicators of decline and end of life care as reasons. Right. Reasons why people thought about consulting palliative care. So that first step, which is resident identification.

Connie 21:45

Right, right. And this is kind of where I’ve taken my research direction.

Eric 21:49

Yeah. So what happened after. So this referral Process four steps. First one is you got to find out who the resident is. What’s that next step?

Connie 21:57

So the next step was generally trying to assess whether they were eligible for palliative care. And that came down a lot of times to asking the provider whether they felt they met criteria and then also looking to see if they had the financial, like the proper insurance or things like that. Because facilities were mistakenly or I guess conflating hospice, the hospice benefit with palliative care. Because when you’re on a SNF stay, hospice is also a part A.

And so there’s a problem with the payment. And so a lot of times provider or nursing home providers or the nursing home would much rather financially incentive to have that patient stay in a SNF stay versus transition to hospice. And then there’s also some financial benefit for the patient as well if they have to pay for room and board. But yeah, so the next step was trying to make sure they were eligible for those services.

Eric 22:59

And Kathleen Kerry, do you want to talk any more about that financial barrier, that hospice? I think, Alex, you wrote about this too, the rehab to death.

Cari 23:09

Rehab to death. Yeah, sure. I mean, the way it’s structured, right, is if you need rehab, if you qualify for rehab, Medicare will pay for 20 days in a nursing home, in a SNF, you know, for a SNF stay. And if you decide, gosh, I don’t think that’s actually my goal, I’d rather go to the facility and begin hospice once I arrive. Well, you’ve just added 20 days at a cost of 300 to $500 a day. And that’s a lot of money because now the Medicare benefit won’t pay for your room and board because you’re receiving hospice, you’re not receiving rehab. So there’s a big incentive to do a rehab stay. And a lot of people will say, well, let me give it a try and let me see if I will bounce back in that time.

And then if I don’t, maybe we’ll transition to long term care. But there is that initial incentive. And then of course, the facility is making more money while you’re on a SNF stay than if you’re there for long term care. So those are some driving forces. And then I just wanted to mention one other thing that I was thinking about when Connie was talking, which is that a lot of people in nursing homes die of general decline, but you can’t certify someone for hospice when they’re generally declining. So it does become a little bit Difficult in that setting. Kathleen. Sorry.

Kathleen 24:29

Oh, no, I was just going to affirm. The only time that Medicare is paying for nursing homes is in that post acute hospitalization rehab context. Medicaid is who pays for most nursing home bed days. So if you do not have Medicaid and you go into a nursing home for supportive care on the hospice benefit, that family is paying for it out of pocket. So it’s both a facility and a patient incentive to transition from the hospital. Use your Medicare benefit to pay for that care.

There’s other financial incentives at play. If you have a long stay resident who’s likely on Medicaid and they transition to hospice, there’s a pass through of the Medicaid daily payment that goes through the hospice agency and then to the nursing home. So the nursing home’s not getting directly paid, so there’s a delay. And sometimes some of that money, I think almost always some of that money is taken off for the hospice to do that service. So there’s a few financial. Yes. Disincentives to providing hospice care, nursing homes.

Eric 25:43

And if they’re on Medicaid, short stay versus there for hospice, the nursing home gets more money if they’re there for short stay, rehab or skilled.

Kathleen 25:53

Oh yes, Medicare reimburses at a higher daily rate than Medicaid.

Connie 25:56

Yes, much higher.

Alex 25:59

And we should mention that one of the great things the VA has done is to provide payment for room and board in nursing home facility for veterans who are on hospice. And I think that’s a terrific match for that population of veterans who are dying who are often lack the means to pay for room and board. And boy, wouldn’t it be great if that kind of service was part of the Medicare hospice benefit as well.

Cari 26:31

No question about it. We did a study a number of years ago looking at that and I think the worry would be, oh gosh, people will use this benefit, you know, a lot. In fact, it’s not used a lot. It’s a very, I think, appropriate amount that people end up using that particular benefit. And it’s amazing. You know, I work in the VA and we have somebody who doesn’t have the finances to support a stay in a nursing home and they’re on hospice. And it’s such a relief to family and to the providers and the patient, of course, to be able to go receive the care you need and receive hospice. And I think in many cases in the VA we avoid that rehab stay. That’s really to get a few free days in the nursing home because everybody knows this person’s not going to be able to rehab because we’ve got this other benefit.

Kathleen 27:25

Well, I was just going to say, I think that there are a lot of strategies to optimize hospice use in nursing homes, and some of them are policy and regulatory fixes. But to Cari’s point about how it is difficult, even with someone with advanced dementia, to know how long they’re going to live, that can lead to delays in accessing the hospice benefit. There are also people who, you know, hospice, they would never choose to change over to hospice.

It’s not going to be acceptable to them. And then there’s also people who really potentially your person, Connie, who transitioned off of the hospice benefit, she may have lived for another couple of years, but with significant symptoms. So I think that fundamentally hospice will not meet all the palliative care needs, even if optimized in the nursing home population, which is why it’s so important to wrap our minds around how we can do this. What are the different pathways? There’s more than one to do this in this setting, to do palliative care more broadly in this setting.

Eric 28:33

Okay, so I want to get to that how to do it. But let’s. Let’s finish off the four steps. So the first step for palliative care referrals is you identify the resident. We talked about the barriers to any.

Connie 28:45

Solutions to that, by the way, to identifying residents.

Eric 28:48

Yeah. Besides using a structured tool, I think you mentioned using the MDS nurses, by the way, what is an MDS nurse?

Cari 28:59

Aha.

Connie 28:59

Okay. So in the nursing home setting, you have required assessments that occur on a regular basis. Generally they’re quarterly or with any change of condition. And they’re real comprehensive assessments. So they’ll include cognition, their ADL’s, incontinence, disease process. So very, very comprehensive assessments. And they’re required on a quarterly basis. And they’re supposed to drive care planning. So they take the results from those assessments and they complete their care plan and they decide on their goals. But since those assessments are comprehensive, the MDS nurse, which is they’re called minimum data set assessments.

So the nurse that fills these out on a regular basis was identified as a person that is ideally proposition or positioned in the nursing home setting that would already be conducting assessments and when to have really deep knowledge what these patients needs are, that they would be a really good place to do some kind of structured screening for palliative care needs.

Eric 30:01

That’s beautiful. MDS 4.0 right there. Okay, so you identify the resident, you assess for eligibility. Consensus building is Third step in this palliative care referral process that you wrote in this journal, Applied Gerontology, which I’ll have a link to in our show, notes, what was consensus building?

Connie 30:22

So, and I want to clarify too, some of the buildings actually reversed step two and three. So sometimes, generally it was in this order. So consensus building was trying what a lot of people called getting everyone on the same page. So there’s a lot of barriers to palliative and hospice care because people can conflate the two, and they think when you go on to hospice or palliative care, that you’re just generally going to die in the next, you know, days, weeks, hours. And so there was a lot of misconceptions around palliative care. And so bringing information to people that says, you know, we think that your parent or your mom or your dad, you know, meets the criteria and would benefit from a palliative care consult can really set someone aback that’s not ready for that information. And if they conflate that with hospice care, the consensus building step was along the lines of talking then with providers, talking with families, talking with patients, and then deciding on a course of action.

Eric 31:23

And then the last, the fourth step was consultation.

Connie 31:28

And then the fourth step was actually trying to get the consultation once the need was identified and the consensus was reached. And this was still problematic.

Eric 31:36

Why?

Connie 31:36

Particularly for people with dementia. And it’s like Kathleen noted, most of the time you would have to send someone out of the building, you’d have to, to get transportation arranged, and you would have to take them to an outpatient visit, which is very, very difficult, particularly for people with dementia. There’s not a lot of palliative care specialists that actually go to a nursing home. So that was one of the largest barriers in the actual obtaining the consultation.

Eric 32:05

Are there people looking into how to improve specialty palliative care consultations in nursing homes?

Connie 32:11

Kathleen?

Kathleen 32:13

I mean, I mean, absolutely. So part of it is it has to, it has to make sense. Like, it has to make sense in terms of, can you bill for it? You’re going to drive all the way to this nursing home. Are you going to see multiple people there? Do you have a panel of residents that you’re following? And I, you know, breaking down this process is so important because if we can work on the identification part of it and if we could even automate the identification part and if we could provide. This is why it has to be, like Connie said, we need to enhance capacity in the nursing home, the level of knowledge, understanding what palliative care can offer, et cetera, to kind of make some of those other steps move through a little faster.

But yes, I think that we have to work on the business model part of it and the evidence based part of it, and then we can get more palliative care providers in there. But they need to know they’ll be impactful. They need to know they’ll be welcomed and accepted and that they will have enough residents there to make it make sense to drive there.

Eric 33:25

What about telehealth?

Cari 33:27

It’s so tough. We tried to do this during the pandemic and you would think it would be easier than it is.

Eric 33:35

Yeah, you got, you got people there. We could do it in people’s homes. Why can’t we do it in.

Cari 33:40

Right, right. Okay.

Alex 33:42

So does some of this. Yes, I know Lynn Flinton, who’s a frequent guest host of this podcast, was actually one of the interventionists in her studies is like, would be the palliative care doc who’s looking on a screen and being wheeled into somebody’s room on a monitor.

Cari 33:56

Right, right, right. So it makes perfect sense. But I’ll tell you, the barriers that we’ve run into are, number one, that the iPads disappear and they’re hard to find, and there’s all sorts of technical glitches and people get frustrated. The staff in nursing homes are busy. They are busy. They do not have capacity to do extra things. And so this takes time. And they need to know when to go in there and that the, you know, the clinician’s going to be ready. And then there’s hearing issues. That’s probably the biggest thing is that it’s really tough for, for people to be able to hear the visit. And then with the high prevalence of dementia, you need a companion there to help often. And arranging that can be logistically tough. So there’s, there’s definitely barriers, but I.

Alex 34:42

Feel like maybe there’s solvable problems. I don’t know. Here’s the future where you have definitely solvable.

Cari 34:49

Definitely.

Kathleen 34:51

I haven’t given up on it.

Alex 34:52

Yeah, you haven’t given up. Like an AI robot goes in the room with the screen and that links to the human palliative care provider and is also the companion. And then there’s an assistive amplification advice that’s the robot puts on the patient’s ears. Beautiful, beautiful.

Kathleen 35:11

Step before that could be, you know, this is where we’re talking about the multidisciplinary palliative care team. And I think that one of the hardest things, anytime we’re doing interventions in nursing homes is if we are asking the staff to do more things or different things than their usual workflow, we’re already way behind. Like it’s going to be a huge challenge. And so if we can send someone in there to help facilitate that side.

Eric 35:36

Like a palliative navigator, part of the team that, like a palliative navigator, like.

Kathleen 35:42

You know, so I think they are solvable problems by human beings and by robots. So.

Alex 35:50

It reminds me me this like idea that they’re so crunched for time reminds me of the. I remember Cynthia Boyd did this in primary care where she was like, okay, let’s say you have a typical primary care visit for a complex older adult and here are all of the things that guidelines say you should need to.

Cari 36:05

Do and here’s all take two hours to do that.

Alex 36:08

It’s like there’s no way you could do that. And the nursing home staff are similarly like tasked with doing so many different things. Like one of the reasons and the pushback against the primary palliative care in nursing homes is that they just can’t do more.

Eric 36:23

You know, there’s no time.

Alex 36:24

Yeah. They’re so short of time. But some of these things are addressable potentially through education. You know, on the other hand, like we had Lee Vanden Block, remember on that podcast in the way Back machine in Europe, who did that, you know, multi country study of primary palliative care and no difference.

Eric 36:42

Yeah. Is there any evidence for primary palliative care? I mean anywhere but for this talk like in nursing homes does. And you know, that study was a hard. No. And part of it, what I remember is like staff turnover, even the people that you trained, like they’ll go on to something else. Then you got to train more people. Then you got to train more people. And yet nursing homes in the US have, you know, 100% staff turnover over the course of the year.

Alex 37:12

Yeah.

Connie 37:15

Big problem in nursing homes. And that’s why we need to do something to integrate it into workflow so that the new person coming on doesn’t need as much training. So perhaps the EHR identifies someone that flags someone that has palliative care needs and automatic shoots an email to the provider. So I think there’s different ways that we can sidestep around some of that turnover and also sidestep some of the shortages that we see with. They’re just so busy.

Cari 37:41

But the answer is not education, because if you educate this group that’s there today, you’ll have a completely new group two months from now, although they move.

Kathleen 37:49

To other nursing homes.

Cari 37:50

They do, they do.

Connie 37:51

That’s true.

Kathleen 37:51

They move to other nursing homes.

Cari 37:52

But if you wish to improve things in this nursing home.

Kathleen 37:55

I know, I know, but they’re, but they’re often the turnover rates are highly problematic and a fundamental issue in this setting. Often nursing homes, heavy core group of staff that they do retain. And I’ve heard administrators say, I wish you’d focus on retention rates because I, you know, they were always going to have some turnover. But I try so hard to support staff and there are people who stay with me over time. So not everyone needs to be a palliative care expert in the facility. Right. Like, but I think there, there is some, you know, there’s sort of this fundamental knowledge base that’s important around symptom assessment and then communicating that, et cetera. And then there need to be some key people with some palliative care knowledge in terms of how it should look.

It could differ by facilities, I think, Connie, sometimes appropriately. Right. Because we have some facilities whose the medical director is board certified in palliative care. I think the residents there are likely fewer because I think, Alex, you were asking about that. How many people in this building are really need a specialist? I’d say fewer in that one. And so that’s, again, I think this is why. This is why this is challenging.

Eric 39:09

Yeah, it’s a really tough nugget. Primary problem care anywhere is a really tough nugget to crack nursing homes in particular. But I like your point. Like, can we have, like, you know, maybe they’re not specialists, but maybe, you know, a certain few people who are retained longer become more specialized over time. I think what I remember from that European study is that those people were actually heavily recruited away from that nursing home because they have that expertise. And the other problem was the providers, the MDs, the MPs, they’re hardly ever there in the nursing home. And communicating those recommendations is very difficult because you don’t see them around.

Cari 39:51

Right, right. In one of our studies, we screened people for palliative care needs and then we forwarded a consult request to the primary care doc for that patient. And that was the hardest part. And so we eventually just did an auto consult. We said, if we identify that this person needs consultation, can we just do it? And they eventually just let us do it because that back and forth was too clunky.

Eric 40:16

So I love all this discussion about kind of referrals, issues with primary and specialty palliative care, kind of for each one of you kind of how are you thinking about the next steps of what you’re looking at in this population? Kathleen, I’ll start with you.

Kathleen 40:33

So I am finishing a clinical trial of a specialty palliative care intervention called the Uplift study. John Cagle at the University of Maryland is the MPI on that study. We’ve implemented a this palliative care model in 16 nursing homes in Indiana and Maryland. So results to come within the next year from that study.

Eric 40:57

Oh, we’re gonna have to have you and John on.

Kathleen 41:00

I can’t wait. Leave. Abandoned Block is a consultant on our study and it has been really helpful in helping us build on what the work they did in their eight country.

Eric 41:11

Can you describe in a very, if you can describe, if it’s not embargoed, what the intervention actually looked like? You’d have to talk about the results.

Kathleen 41:19

Yes. So the Uplift study is doing a mix of this, educating staff, you know, so they know the difference between hospice and palliative care basics around symptom management, et cetera. Identifying a champion within that building, but and having a structured referral process and then having specialty consultants come in to see residents who are identified and do consults and do follow up consults and follow them over time. A one year intervention period.

Eric 41:48

Oh, that’s great.

Kathleen 41:49

Yeah.

Eric 41:50

Oh, we’re gonna have to have you back, Connie. What’s next for you?

Connie 41:54

So I’m taking this research to the next step. I have a career development award waiting council next month and. Yeah. And then I’m launching the study. It’s called Timely Identifying Palliative Needs in Nursing Homes. Tippin. And so we’re going to build the evidence base for screening in nursing homes and implement it.

Eric 42:13

Oh, that’s fabulous. And Cari?

Cari 42:16

Well, I think the solution really is largely what Kathleen’s doing. You have an external group that’s coming in because of the way that the nursing homes are struggling with staffing and things and helping support them. The models that seems are most successful are where you’re kind of co locating and you’re partnering with specialists and have a relationship there. And as far as the shortage of palliative care providers, you know, we have a program here at University of Colorado that trains non physicians to become, you know, proficient in palliative care.

And it doesn’t always have to be a doctor. Right. It can be an app, it can be a social worker, it can be a chaplain. You know, there’s many things that can be accomplished beyond, you know, what we’re used to seeing with a typical MD provider. And so I think that’s the future is that we’ve got more disciplines involved who can do this type of consultation and do the goals of care discussions and you know, maybe they’re not the symptom management f, but they have the other skill sets. So I think that’s where we’ll see some success.

Eric 43:16

And last question, Kerry, Kathleen, either one of you. I see a lot of research studies out there. Oftentimes nursing home patients are not included in those, maybe explicitly excluded from those studies. It seems like doing research in nursing homes, either people don’t care or it’s too hard. Is there any thought about how we can improve that going forward in the future?

Kathleen 43:43

Absolutely. There are a number of implementation challenges that unless you test it in a nursing home setting, you’re not going to navigate it, you’re not going to figure out those solutions and do that hard work. And the lack of studies in this setting creates delays in getting evidence based therapies and treatments to nursing home residents. And I think we saw that writ large during, during the pandemic. The NIA has invested in a U24 called the Next Steps project which, which I lead out of Indiana University with a large group of colleagues including Cari, who’s a leader on that project. And the whole goal of it is to enhance and expand the number of explanatory clinical trials in the nursing home setting.

We have a pilot projects program that Cari leads that we just had our first round and we’re so excited to review the many applications we got. And we’re, we’re working hard to create all kinds of guidelines, templates and here’s how you set up agreements with nursing homes and directly address those barriers that people have have encountered. I have found it a very rewarding place to do research and I’m so excited that Connie, you’re building your career working in this setting where you have such a passion as well. And I think there’s a lot of good work to be done and we can figure it out.

Eric 45:09

Hallelujah to that.

Cari 45:11

Well, can I add one more quick thing?

Alex 45:12

You should.

Cari 45:13

Eric, can I add one more really quick thing?

Eric 45:14

Yeah, go ahead Cari.

Cari 45:15

So we’ve started a living lab where we have residents at facilities as a part of an academic research advisory council where we bring research projects to them and say, hey, do you think this is appropriate for your community? And we have amazing attendance. The interest from residents on this is over the top. So I will just say that there is an incredible interest on the resident side. And so I think that’s where we have a lot, a lot of opportunity is with the residents. The staff are busy, but the residents would love to engage with research that.

Eric 45:48

Was worth the break to my transition to the Hallelujah song. So thank you for adding that.

Alex 46:01

For your faith was strong but you needed proof. You saw her bathing on the roof her beauty in the moonlight overthrew you she tied you to a kitchen chair she broke your throat throne and she cut your hair and from your lips she drew the hallelujah. Hallelujah, Hallelujah, Hallelujah, Hallelujah.

Eric 46:48

Kathleen, Connie, Cari, thank you for joining on this podcast and thank you for all the research that you’re doing on this.

Cari 46:54

Thank you for having us.

Eric 46:55

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

This episode is not CME eligible.