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If you develop dementia, odds are you will spend the last months to years of your life in a nursing home or assisted living facility.   While we like to think about how our goals and preferences will influence what that life looks like, including whether you will get potentially burdensome interventions, your fate is probably influenced more by factors like where you live and what nursing home you happen to end up in. 

On today’s podcast we dive into drivers of invasive procedures and hospitalizations in advanced dementia by talking to some pretty brilliant nursing and nurse practitioner researchers focused on dementia, geriatrics, and palliative care in nursing homes: Ruth Palan Lopez, Caroline Stephens, Joan Carpenter, and Lauren Hunt.

We start off discussing the findings of Ruth Palan Lopez’s publication in JAMA IM on the ADVANCE study.  This study explored nursing home organizational factors and staff perceptions that are associated with the variation in care for residents with advanced dementia.  Now when I say variation, I’m not talking about small little clinically questionable variations.  I’m talking about some nursing homes with no residents with advanced dementia being tube fed, and some with nearly half of their residents with advanced dementia being tube fed.  

We go on to talk about other findings of this study including that staff in all nursing homes expressed assumptions that proxies for Black residents were reluctant to engage in ACP and preferred more aggressive care, issues with the skilled nursing facility benefit (“rehabbing to death”), the palliative care needs of nursing home residents, and so much more.

For a deeper dive, check out some of these other studies and resources we talked about in the podcast:

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

Alex: This is Alex Smith.

Eric: And Alex, we got a full house today. Who do we have with us?

Alex: We have a wonderful full house today. Our first guest is Ruth Palan Lopez, who’s a geriatric nurse practitioner and the Jacques Mohr Professor of Gerontologic Nursing at the Massachusetts General Hospital Institute of Health Professions. Welcome to the GeriPal Podcast, Ruth.

Ruth: Thank you. Thank you for having me.

Alex: And we’re delighted to welcome Joan Carpenter, who I just did the State of the Science with at the AAHPM HPNA meeting. She’s a geriatric nurse practitioner specializing in palliative care, and assistant professor at the University of Maryland School of Nursing. Welcome to the GeriPal Podcast, Joan.

Joan: Thanks. I’m delighted to be here.

Alex: And we have Caroline Stephens, who’s a gerontologic nurse practitioner and geropsychiatric advanced practice nurse and the Helen Lowe Bamberger Colby Presidential Endowed Chair in Gerontologic Nursing at the University of Utah … I had to take a breath there. Welcome to the GeriPal Podcast, Caroline.

Caroline: Thanks, Alex. I know it’s a mouthful. It’s exciting to be here.

Alex: And welcoming back to the GeriPal Podcast for, like, her 10th time, we have Lauren Hunt, who is nurse researcher and assistant professor at the UCSF School of Nursing. Welcome back to the GeriPal Podcast, Lauren.

Lauren: It is so great to be back. Thanks, Alex.

Eric: So we’re going to be talking about nursing homes and advanced dementia. This came from a JAMA IM study that Ruth just published, the Advanced Study of Association of Nursing Home Organizational Culture and Staff Perspectives with Variability in Advanced Dementia Care.

Eric: We’re going to dive into that study and others. I just want to say, one of my favorite studies. Ruth, it was like, what, 10 years ago you published a Archives paper?

Ruth: I did, yes, I did.

Eric: I love that; I quote that study all the time.

Ruth: Aw, thanks.

Alex: That is like, there are two studies that I give out as exemplars of outstanding qualitative research. One of them is Karen Steinhauser’s Annals of Internal Medicine paper on, In Search of a Good Death.

Alex: Then the other is your paper on feeding tubes and nursing home culture associated with nursing homes with high rates of feeding tubes and low rates of feeding tubes.

Ruth: Oh, thanks.

Eric: I will have a link to it on our Show Notes. But I love how it just paints a picture. And I think the same is true for this JAMA IM study.

Eric: But before we talk about all that, I think somebody has a song request for Alex.

Caroline: Yes, Alex, I am requesting Kenny Chesney’s While He Still Knows Who I Am.

Caroline: As a very young caregiver myself for my parents who had advanced dementia, as a teenager, this was just a really powerful song that just hit home as a caregiver. Just the living with someone who has dementia and knowing what’s on the horizon.

Caroline: This topic, and Ruth’s work in particular with feeding tubes, was a decision that I had to make for my father many, many years ago; 25, 30 years ago. Bring it on.

Alex: Thank you for the song choice, Caroline.

Alex: (singing)

Caroline: Thank you, Alex.

Eric: Pretty song selection. We usually ask why somebody chose it, but that one spoke for itself.

Eric: So let’s dive into the topic. Ruth, we were talking about some of your past work, too. Can we go maybe back in time and just, how did you get interested in this as a subject to focus on your research career?

Ruth: Sure. Well, I’m a geriatric nurse practitioner and I provided care to over 800 nursing home residents in 11 different nursing homes. I was really struck by the difference in care provided to people with advanced dementia.

Ruth: There were some people who got comfort palliative care in the nursing home at end of life. And there were other residents that got sent back and forth to the hospital frequently, that had invasive procedures like feeding tubes and blood draws and blood transfusions, to make sure that their hematocrit looked really good in the record.

Ruth: And I was really interested in the drivers of those decisions. Why do some people get comfort and some people get sent back and forth to the hospital with invasive procedures? And that really put me on this career path to conducting research to figuring out why it happens, and then how can we make it better?

Lauren: Ruth, you recently published this really fantastic paper in JAMA Internal Medicine: The Association of Nursing Home Organizational Culture and Staff Perspectives with Variability in Advanced Dementia Care at the Advanced Study. My question is, why this study, and why now? How did this project get launched?

Ruth: Sure. That also goes back a little ways. Many years ago for the first study; I believe it was in 2009, 2010; I met with Susan Mitchell at the Institute for Aging Research, and told her that I wanted to study the use of feeding tubes for people with advanced dementia.

Ruth: She said to me, “You can’t study that here.” And she pulled out this map that Joan Teno and she had produced, that showed the variability in feeding tube use for people with advanced dementia.

Ruth: And what we saw was that the South used feeding tubes 10 times more frequently than the North, and African Americans were fed with tubes twice as often as whites.

Ruth: She said to me, “If I could do anything, I’d go down there to one of those Southern nursing homes and see what’s going on.”

Ruth: And I said, “I can do that. I’m a qualitative researcher, and I know how to do ethnography.”

Ruth: So together, we found two nursing homes in the South that were very close to each other, down the street from one another. One had a very high rate of feeding tube use, and the other had a much lower rate of feeding tube use.

Ruth: I camped out in those nursing homes for about a week, 10 days in each one, really asking myself, “What is the difference in the culture of practice between these two nursing homes? Why do we see these differences? What might be contributing?”

Ruth: And what we found in that study was four domains of culture. We found their physical environment was drastically different; where those with low feeding tube rates had really a rather beautiful physical environment. The other nursing home had wallpaper peeling off the walls and a strong smell of urine.

Eric: I remember the one that had the nice environment. They had an ice cream parlor and-

Ruth: That’s absolutely correct.

Eric: There was a food contest or something.

Alex: Yeah.

Ruth: Every day, they had a different cooking contest so that there was food throughout the facility, and all day long.

Eric: And the smell of food, right?

Ruth: Yeah, the pleasant smell.

Eric: The environment; when we think about what makes us hungry. When we go to a restaurant, it’s not just like the food comes to you; it’s like the smell and the experience-

Ruth: The smell and the environment and the nice table setting and nice dishes, and all kinds of things that would make you want to eat more.

Ruth: We also saw the decision-making processes were different. Whereas the home with the low rate of feeding tube use involved families in decision making. We didn’t see that in the high rate nursing home.

Ruth: We also saw care processes were different. You think the number of staff available to feed people; feeding for people with advanced dementia is very time consuming, and takes a lot of hands and a lot of time.

Ruth: Then finally, we saw that their implicit values were different. We saw that the nursing home with a low rate of feeding tube use really valued comfort, and valued keeping people in the facility.

Ruth: Whereas the nursing home with the high rate of feeding tube use were more concerned with regulations, making sure that they didn’t get any dings on their surveys, and were really concerned about maintaining people’s weight. That led us then to expand this study to include both hospital transfers and feeding tubes.

Ruth: I do have to also say that it’s important to remember that feeding tube use and hospital transfers for people with advanced dementia has no demonstrated clinical benefit. So when we talk about intensity of care, we’re talking about intensity of care that’s not benefiting people.

Lauren: You have a very interesting methodology to this study; I wonder if you could just touch on that. I know we want to spend a little more time on findings, but just because it’s a very unique setup with figuring out the high-use facilities within the low-use regions, and the low-use facilities within the high-use regions.

Lauren: Just how you thought about approaching that, and what was surprising or not surprising about how those system level factors interacted.

Ruth: Yeah, it’s a tongue twister. And to try to explain it can get your tongue all in knots. But what we wanted to do was to control for regional … what’s that called? Market factors that may influence hospital transfers and feeding tube use.

Ruth: We wanted to control for those regional factors. So we looked at hospital referral regions, and we looked at high- and low- intensity regions. Then within each region, we looked at high- and low-intensity nursing homes.

Ruth: So we picked two high- and two low-intensity regions. And within each region, two high- and two low-intensity nursing homes. And we used MDS data to find that. Which is a little odd in qualitative work, because we used quantitative data to actually identify and purposely recruit our nursing homes. Then we went about conducting a qualitative study.

Eric: So I got a question … it’s about wording. I think the previous one you used “high use,” and now we’re talking about high intensity.

Ruth: Mm-hmm (affirmative).

Eric: Even when I look back to your Archives paper, the high-intensity nursing home seems like the one that has low use of feeding tubes. They’re providing really intense care; it’s just not feeding tubes and other things. It’s meals and intense hand feeding.

Ruth: Mm-hmm (affirmative).

Eric: How did you think about the wording when we were talking about low intensity, high intensity?

Ruth: Yeah. I think that when for this paper and when we talk about feeding tube use and hospital transfer, we use the word “intensity of care.” But it’s the wrong kind of care.

Ruth: I’d like to say, and I think that that’s the paradigm shift that I’d like to recommend, which is that we have high-intensity care that’s focused on comfort.

Ruth: Because it’s not that we care less. It’s not that we’re providing less quality care when we choose not to do hospital transfers and we choose not to do feeding tubes. It actually is a high-intensity form of care.

Ruth: But I think that we have to be very careful. I think what we’re really getting at in this study is high use of low-value care.

Eric: Yeah. Because it’s also not just about comfort, because there’s no demonstrable survival or other meaningful benefit for feeding tubes. Yeah, it’s a challenging concept to define and to put in a simple phrase.

Ruth: Mm-hmm (affirmative). Yeah. And to keep it short work for an article.

Eric: Yeah.

Ruth: With a minimal word count.

Ruth: Something that we did find surprising, although we shouldn’t really be surprising, is that the nursing homes were very segregated. And we wanted to be sure that we had at least four African American residents with advanced dementia in each home, so that we would be able to find family members to interview.

Ruth: But the nursing homes were so segregated that we really did have a hard time finding nursing homes with a lot of black residents, especially in our low-intensity nursing homes.

Eric: Can we jump to the results? What did you find in this study?

Ruth: Also in a few short words, we found similar to our initial study that there were differences in physical environment.

Ruth: Again, we included 14 nursing homes. So we didn’t see a clear pattern where we saw all high homes one way, and all low homes another way. But we did see a trend where the three highest nursing homes were the most unpleasant.

Eric: What does unpleasant look like?

Ruth: Very strong odor, devoid of furniture, broken screens …

Eric: So it was the physical environment and …

Ruth: Physical environment.

Eric: … there was care processes.

Ruth: Yes. Care processes, insufficient numbers of staff to feed. If people got sick on off shifts, or they didn’t have an RN on staff if somebody with advanced dementia got sick, then they were transferred to the hospital. So we saw care processes influencing hospital transfer and feeding tubes.

Ruth: Decision-making processes, we saw the lower nursing homes tended to have a clear process for advanced care planning and for decision making to include families in an informed decision. Whereas the high-intensity nursing homes tended not to have a process or did not include families.

Ruth: Then in their values … interesting thing was that we found that all nursing homes, regardless of intensity, wanted to keep people with advanced dementia in the facility, and provide end of life care in the facility. But not all homes were staffed to be able to do that, or had the resources they needed to do that.

Ruth: One of the other findings was that there was across all nursing homes, a belief that black families did not want to engage in advanced care planning. There was a hesitancy to engage black families. So we see a disparity there that needs to be tackled.

Caroline: And I think, Ruth, your work really highlights just the social determinants of health and how it’s not necessarily race as a factor that’s doing this. It’s kind of the environment in which they’re receiving care. And I think you really highlight that and dispel some of the myths out there.

Caroline: And I love how you highlight the importance of these staff biases, perhaps implicit bias that is driving some of these healthcare decisions. I would love to hear you unpack that more, because it’s really such a hot topic right now.

Ruth: Absolutely. I think that when I first began doing this work, there was discussion about, and reviews of grant applications that said, “Well, can you really call this a disparity? Isn’t this just a difference?”

Ruth: Yes, you could say that if somebody had all the information they needed and chose a form of treatment, then yes, that’s a difference. But if people aren’t given all the information that they need, they’re not even provided with a choice, then that’s a disparity. Then that’s not a difference.

Joan: Well, and I think Ruth, you also mentioned this earlier around the policies in some of these facilities: that they were more worried about adhering to their policy and to their meeting whatever their goals are for the facility, not necessarily for the resident goals.

Joan: It reminds me of the skilled nursing facility benefit, and how the policy behind that runs what the care looks like for the residents. And more of the concern is on the policy and the payment models, as opposed to the care of the residents. Is that something you saw within some of this work as well?

Ruth: We did see some nursing homes that were concerned with their hospital transfer rate and their return, their bounceback rates. So they wanted to keep people in the facility because they didn’t want that return to the hospital rate to be high, because that doesn’t look good. Which, if they’re getting high-quality care in the nursing home, that’s great. But to be looking only at the numbers, to me, is concerning.

Lauren: And that was a pretty recent policy change, where they started measuring 30-day re-hospitalizations. Caroline, I remember when you were getting your IMPACT study launched, and all of a sudden there was just a lot of interest in how to integrate pal care so you could reduce these 30-day admissions.

Caroline: Right. Yeah. Nursing homes finally had skin in the game, and they had to be accountable for those outcomes. It wasn’t just needing to be a good player with the hospitals who were worried about their 30-day re-admissions.

Caroline: Now I think that the alignment of the policies, but I think Ruth highlights … and Joan and I were on a paper together with Mary Ersek as the lead author in JAMDA recently that is putting forth a new framework for high-quality nursing home care. And basically saying that high-quality nursing home care and palliative care are one and the same.

Caroline: Part of what we identified is exactly what Ruth is mentioning, in terms of aligning these measures. Because oftentimes they’re so concerned about weight loss, but not necessarily recognizing that weight loss is a natural part of the dying process.

Caroline: But yet, from a quality improvement perspective, or QI perspective, they’re dinged for weight loss. Not necessarily having a palliative care lens through which those quality measures are being taken into consideration.

Caroline: Joan, I don’t know if you want to highlight some other comments from that paper as it relates to Joan’s work?

Joan: Yeah, well, I think it also goes to not every re-hospitalization is a bad re-hospitalization. What we don’t do enough of is focus on what the goals of care the residents are.

Joan: We focus on what the policies are, what the reimbursement structure is, how are we going to keep our ratings looking good, as opposed to thinking about what a resident wants. This is what keeps me up at night.

Joan: The skilled nursing facility benefit absolutely keeps me up at night, because I see many people with advanced dementia admitted under the skilled nursing facility benefit, who are unlikely going to be able to recover to a previous level of function … or even maintain the same level of function.

Joan: There’s very little bridging between rehabilitative and restorative care and palliative care. That’s where goals of care, and slowly … and concurrent care, thinking about hospice concurrent care with SNF care. There’s a lot of work to be done in this area, for sure.

Ruth: Mm-hmm (affirmative). Mm-hmm (affirmative). I think, Joan, you’re right. You see some people, I think it’s been termed “rehabbed to death,” where-

Lauren: Alex wrote that paper … actually …

Ruth: I love that!

Alex: And we’ll link to that on our podcast

Ruth: No, it’s true, because the rehab … as long as you’re increasing your numbers of steps every day, is reimbursable. But what if we reimbursed for comfort care? Of making people comfortable? Of intensively hand feeding?

Ruth: It’s not incredibly expensive. It’s not nearly as expensive as a feeding tube, but it improves quality of life. It improves symptom management. That’s what nursing and nursing homes should be really, really good at: is providing nursing care that creates comfort.

Ruth: And if that is considered a skilled intervention, it could be reimbursed. Then we wouldn’t play that game of being rehabbed to death.

Joan: A lot of my work comes out of my clinical practice. And I wrote a paper a couple years ago, entitled Forced to Choose: When Medicare Policy Disrupts End of Life Care. And it’s focused on exactly this; on how we don’t have-

Alex: Could you say the title again?

Joan: Oh, sure. It’s Forced to Choose: When Medicare Policy Disrupts End of Life Care. It was in the Journal of Aging and Social Policy.

Joan: And it really came from a resident who I worked with whose family, their goal was to get him back to his home environment, which was an ALF; an assisted living facility.

Joan: But that he could not reach the goals that he needed to within skilled nursing facility care to do that, and how we could not find a way to slowly de-intensify the rehab and intensify the palliative care, because everything was so focused on the skilled nursing facility benefit. And this person did die; he declined and was transferred to an inpatient hospice unit, and died the same day.

Joan: So we abruptly changed care based on something we saw happening over time. But yet the changes we saw, the transitions we saw, but we didn’t transition the care. We didn’t respond. And there’s really no reimbursable system for that. That’s a problem in our healthcare financing system.

Caroline: I want to throw in a geropsych aspect, where this kind of Venn diagram between geriatrics, palliative care, nursing home care; as a geropsych consultant in over 100 nursing homes in three states, I found this issue all the time where the staff are just like, “This person with advanced dementia is pulling out their feeding tube. Give them Halidol, give them restraints, do all of this.”

Caroline: And I said, “No. I think that we need to stop re-inserting the feeding tube.” And I too was just drawn to … from a clinical perspective, from a research perspective, just this revolving door through the emergency room. And how oftentimes the perception that this is supposed to be good quality care.

Caroline: And I think the Choosing Wisely brief that came out about use of feeding tubes, I think really helped change some of the conversation in our nursing home collaboratives and working with hospital re-admissions. We’ve used that Choosing Wisely campaign brief to help nursing homes recognize.

Caroline: Again, just further educating on the front lines and families in particular, I think is really important as well as these policy implications.

Ruth: We did find really interesting differences in knowledge or understanding about those Choosing Wisely.

Ruth: We found in the low-intensity nursing homes; those who did not use a lot of feeding tubes; in low-intensity regions, that there was really good understanding that feeding tubes don’t prolong life or improve quality of life in people with advanced dementia.

Ruth: In our middle nursing homes, we saw not the same understanding. We saw that they believed that feeding tubes prolonged life, but that the quality of life of people with advanced dementia should not be prolonged. Because their quality of life is so poor, their life shouldn’t be prolonged. That was the middle world.

Ruth: Then we saw at the other extreme where people thought that feeding tubes prolonged life, improved quality of life, made it easier to give medications, which it does do, and that they should be used.

Ruth: So we saw this sway between one end, it shouldn’t be used, and the other end, where it should be used, then this in between.

Ruth: If there is a perception that feeding tubes prolong life, and one decides against feeding tube, that could potentially equate with shortening your loved one’s life. What a horrible decision to have to make!

Ruth: Some nursing homes even had people sign a withhold/withdraw treatment form. Who, as a family member, would ever want to withhold care or kill a loved one by not inserting a feeding tube? Should we not make it totally clear that feeding tubes for people with advanced dementia don’t prolong life?

Ruth: And then maybe we shouldn’t even be offering it to people. We don’t offer them chemo. We don’t offer them dialysis. So why we offering a treatment which we know doesn’t benefit people?

Eric: Why do you think people think it does all these good things? When the messaging out there, at least from the ivory tower academic places, is it doesn’t?

Lauren: Yeah, that was my question. I was like, how do you disseminate this knowledge out to these community nursing homes in rural Georgia so that people know about this?

Joan: I don’t have the answer to that, but I have a hypothesis on why.

Joan: I mean, we think food is love. What do we do with food? We have meals together with friends and family, and we have rituals around food. Food is such a big part, and I think that really, there’s that cultural piece.

Joan: And I think until you’re able to have that discussion with someone in a way that you understand, in a way, what food and nutrition means to that family or that person …

Joan: Some of it, I think there’s pieces there. I’m not sure if it’s a one size fits all; that we can do a … what is it, a public service announcement about feeding tubes, right?

Joan: I don’t know. What do you think about that, Ruth and Caroline?

Caroline: I’ve had a lot of n of one experiences, or just clinical experience one on one, where I’ve had to, as the geropsych consultant, encourage families and providers to stop the feeding tube. Because this revolving door in the emergency room was basically assault and battery, if you will.

Caroline: And what ended up happening was this pulling of the feeding tube, and encouraging family to engage in hand feeding and getting the staff engaged in hand feeding. We got rid of all these psychotropic medications and this person … one individual had had a vascular dementia.

Caroline: It was just the treating of him as a person, and removing that high-intensity care of the aggressiveness with which we were using the feeding tube. He ended bouncing back and he just came to life.

Caroline: The family at first was really hesitant, because they felt that they were going to kill their loved one by pulling the feeding tube. But it actually brought quality of life to both of them. She could more meaningfully engage in the actual encounter.

Caroline: And he ended up having a good quality of life, relatively speaking, for a good year, which was much longer than was expected. But she was able to be with him, and be more engaged.

Eric: Well, I think the challenge though, too, is that’s a lot about thinking about their values, what’s important and decision-making process.

Eric: What I liked about Ruth’s paper is there are all of these structural issues. And even somebody’s values may not matter as much as … and we’ve learned this from a lot of things … where you live, how intense your facility is regarding feeding tubes.

Eric: People’s own thoughts and decisions may value less than what nursing home you happen to be in. What does the physical environment look like? What does the care process look like when you don’t have enough staff?

Eric: I’m reading from Ruth’s paper; “There are several high-intensity nursing homes reported difficulty hiring, staff are exhausting in work and low wages.” One nurse had to go to a vending machine to get food.

Eric: Ruth, where do we go from here with these pretty … it’s not just, “Let’s educate family and staff. Let’s bring in palliative care into these environments,” when the environment is part of the problem.

Ruth: When I look at that big picture, sometimes I feel really small. And I sometimes want to throw up my hands and say, “Well, what can I, one person, do about this?”

Ruth: But as I look at all of your faces on our call, and realize that I’m not working on this alone, I’m not by myself here. I think one of the things is really to get the word out.

Ruth: This is a movement, right? This is the baby boom generation. These are the people who started the Beatles. They’ve started women’s rights. They started civil rights. It’s going to be this generation that rises up and says, “No, we’re not going to take this. We don’t want to put our loved ones in dumpy nursing homes.”

Ruth: And the payment mechanism has to work. Nursing homes are subsidized by their Medicare, by their rehab patients. And Medicaid doesn’t pay enough to pay for long-term care. That doesn’t work. Once a nursing home gets a bad reputation and they can’t attract the rehab patients anymore, they’re in big trouble.

Ruth: People, society, those that need nursing home care, need to speak up and say, “This isn’t right. This doesn’t work.”

Ruth: Really, it’s a systemic problem. It’s way more complex than an educational program. We can teach people, “Feeding tubes don’t work.” But if there aren’t enough hands to feed people, it’s going to be a problem.

Alex: Caroline and Joan, interested in your thoughts on what is it going to take to move the needle here? We’ve talked, you’ve touched on lack of integration of palliative care in nursing homes.

Alex: I should mention that we did a podcast with Lieve Van den Block about her international trial of palliative care in nursing homes in Europe, which was a negative study.

Alex: We talked about how it’s such a tough place to integrate palliative care with high staff turnover. Physicians often not present except for an occasional monthly visit. Many residents dying with untreated symptoms, often after multiple high hospitalizations, life prolonging treatments, and very little specialty palliative care.

Alex: What hope is there? What efforts are you doing, and what are you seeing out there for integrating a more palliative approach into nursing homes? Caroline, maybe start with you?

Caroline: Sure. I think that this is obviously a major challenge. We have done some, I think one of my first GeriPal Podcasts was the work that we had published a while ago in JAMA. It was talking with nursing homes and asking them, “How many people do you feel in your facility are eligible for palliative care?”

Caroline: And they’re like, “Oh, maybe 15, 20%.”

Caroline: I said, “Well, Diane Meier at Mount Sinai argues that every nursing home admit is a palliative care admit.”

Caroline: And there was this audible gasp in the room. There’s 14 facilities: administrators, clinicians … and there was this audible gasp in the room. And they said, “Well, they’re not all dying. They’re not all eligible for hospice.”

Caroline: I’m like, “Well, therein lies the knowledge gap.”

Caroline: So we have done a multi-pronged approach using some of that information. We did a palliative care quality initiative. We went in and did a deep dive to figure out who was eligible for palliative care.

Caroline: It was very conservative estimate, found 70% of residents were eligible for palliative care; none were receiving it. And spoke with staff to figure out what their educational needs were.

Caroline: We have an intervention called Improving Palliative Care Access through Technology. It’s a multi-component intervention that not only builds capacity through staff education and support, but also brings in external palliative care consultants, because we don’t have the workforce to meet the demand.

Caroline: Through our pilot work, we’ve definitely been able to demonstrate that it’s acceptable, feasible. It can help improve quality of life, reduce symptom burden and transfers, and help support families in goals of care conversations.

Caroline: Certainly, the pandemic has certainly catalyzed the use of telehealth. And so I think just getting creative and lobbying Medicare to make sure that palliative care is included and part of their permanent telehealth measures, I think will be a key aspect.

Joan: Caroline, that’s such a succinct and great way to improve palliative care nursing homes. I think going back to what Ruth was talking about; and Caroline, I think we really need to reorganize the way nursing home care is reimbursed and delivered. I mean, those things need to happen right at the top level.

Joan: In regards to palliative care, I think we need to be looking at each nursing facility has different needs. Some nursing facilities feel they can deliver palliative care internally, which is great.

Joan: Some nursing facilities really need specialty support from hospice agencies and from external palliative care specialists. I focused a lot of my efforts on looking at the organization and saying, “What is it that you have, and how can we help?”

Joan: In one particular study, we’re providing primary care geriatric nurse practitioners with palliative care skillset so that they can conduct goals of care conversations on their own, and symptom management and assess psychosocial and spiritual issues, which they weren’t doing before. Some of them have told me that that’s the best part of the training: is that they now ask about spiritual needs.

Joan: Then like Caroline, in other work, I’m using a telehealth modality to deliver specialty palliative care services to a facility that doesn’t otherwise have access.

Joan: So I think there are different modalities of delivering palliative care within each facility. But ultimately, until we really focus on how nursing homes are organized and how all care is delivered; like Ruth talked about, I mean, we’ve got to be able to pay nursing home direct care workers and nurses at a rate that’s sustainable and livable.

Alex: Hear, hear.

Caroline: A living wage is key.

Joan: A living wage, for sure. For sure.

Ruth: And that was something I also found uplifting about this research and doing this research. Even in the most under-resourced facility, when I asked people, “Why are you here?” Because literally across the street was a highly resourced nursing home. They could walk across the street and work somewhere else.

Ruth: And they were so dedicated and said, “If I wasn’t here, no one else would be.” Their dedication is really monumental. And we need to support people who are doing this work.

Eric: Well, then thinking about where do we go from here, how do we do that? What do we do? What should we advocate for?

Eric: We’ll do the magic wand. Ruth, if you had a magic wand right now, what one thing would you change?

Ruth: … Wow. One thing … the one thing that I’m focused on right now is encouraging staff and supporting staff to provide comfort care, what I’m calling advanced comfort care, which is focusing on quality of life and on making people comfortable. I believe that most nurses and nursing homes know how to do that, and they can do that. And it’s not super expensive to do that.

Ruth: If we know what’s most important to people, what they like to be called, the food they like to eat, what makes them comfortable, what makes them smile in a day? And we can do that for people and ensure family members that staff are going to do that, then I think we’ll establish trust all around. And that we’ll be able to accommodate people’s needs.

Ruth: It’s not rocket science, and it doesn’t have to be super expensive.

Eric: That’s great. I mean, it just also reminds me of our podcast on structural, institutional, interpersonal racism with Deep Ashana and Deborah, the importance of trust.

Eric: When we think about the disparities of care and how people think about advanced care planning. If you haven’t listened to that episode, really encourage you to all of our listeners.

Eric: Joan: your magic wand?

Joan: I’ve thought about this a lot, and I’m trying to decide what my answer should be. It might be a little bold, but I think it’s to reorganize the way skilled nursing facility care is delivered for post-acute care patients. Just completely reorganize it.

Joan: Focus on goals of care, allow people who are not able to participate in rehabilitation still be covered under the Medicare skilled nursing facility benefit for the first two to three weeks to determine next steps, without being penalized for not being able to participate in restorative and rehabilitative care.

Alex: I like that.

Eric: Caroline?

Caroline: Yeah. I concur with Joan. And I again, reference the readers back to this JAMDA article where we proposed a concerted coordinated framework for achieving an integrated model of palliative care in nursing homes. It was this three-pronged approach focusing on accountability, resources, and expertise.

Caroline: But also, we’ve been doing interviews with nursing home staff in six different states about their experience during the pandemic. I think staffing has just become even more profoundly a problem and a challenge, and people are leaving in droves.

Caroline: One of the powerful quotes was, “Your heart goes black.” THey’re getting beat down. Those folks, Ruth, that you were saying that were just so proud to be there, they’re like, “I can’t do this all myself. My heart’s going black because we’re just losing people left and right.”

Caroline: I think not only how we need to fundamentally change how long-term care is organized, financed and delivered, but the framework of empowering staff and empowering nursing homes; right now we have a very punitive stick approach to whipping nursing homes into obedience, if you will.

Caroline: There’s also a strong financial for-profit component to the nursing home industry that we haven’t really spoken to. But what can we do to incentivize doing the right thing?

Caroline: The carrot approach, and a little bit more of a balance between, “Okay, we’re dinging people for weight loss,” and I get where the historic piece came from there.

Caroline: But we’re not actually looking at who’s in long term care now, and who’s dying in long term care, and how that might actually be a perverse financial incentive to do the wrong thing.

Caroline: So I think, again, those quality measures are key.

Eric: So, “The whipping will continue until morale improves” [laughter].

Lauren: I’ll just chime in.

Lauren: I just think we have to increase Medicaid payments. I mean, Medicaid is the primary payer for nursing home stays, and they’re just clearly not paying enough for the amount of services that are required to care for these patients in the nursing homes.

Lauren: That seems like something that could really help: actually just pay people what it costs to take care of these patients.

Eric: I want to thank you all. Before we leave, Alex, a little bit more of … what was the song’s name?

Caroline: While He Still Knows Who I Am.

Eric: While He Still Knows Who I Am.

Alex: (singing)

Eric: Thank you, Alex. And thank you, Lauren, Caroline, Joan, and Ruth for joining us on the GeriPal Podcast.

Ruth: Thank you.

Caroline: So much fun.

Joan: Thank you.

Eric: And as always, thank you Archstone Foundation for your continued support, and to all of our listeners.

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