Palliative care in nursing homes: Podcast with Caroline Stephens

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

Alex : This is Alex Smith.

Eric : And Alex, we have a couple more people in our room today.

Alex : We have a crowded room today. We’re even out of microphones, we’re going have to share. We have a guest whose article we’re going discuss, and that’s Caroline Stephans. She’s an Associate Professor of Nursing at the UCSF School of Nursing. And she first authored the article we’re going talk about today, “Palliative Care Eligibility, Symptom Burden, and Quality of Life in Nursing Home Residents”. Welcome to the GeriPal Podcast, Caroline.

Caroline : Thank you, it’s exciting to be here.

Alex : And senior author on that study is Sei Lee, who’s a frequent host. And today he’s hoguest? Ghost? Guest host?

Sei : I like ghost.

Alex : We also have Lynn Flint in the room, who’s Associate Professor of Medicine and palliative care physician here at the San Francisco VA and UCSF. Welcome to the GeriPal Podcast, Lynn.

Lynn : Thank you.

Eric : So we start off with all of our podcasts with a song request. Do you have a song request for us, Caroline?

Caroline : I do. I put Alex on the spot and I asked him to sing the song called “From His Window” by John Smith. It’s from a film “The Life in the Years”. It’s just a beautiful story about a son who had to watch his father slowly deteriorate from Alzheimer’s disease.

Alex : We’re just gonna do a snippit to start. [Singing]

Alex : We’ll stop there and listen to the rest.

Eric : So, what movie was this from?

Caroline : It’s a film called “The Life in the Years”, and it’s just a … It’s part of a community initiative to improve care for older adults.

Eric : The topic that we’re gonna be talking about today is your JAMA IM paper that Alex mentioned in the beginning, “Palliative Care Eligibility, Symptom Burden, and Quality of Life in Nursing Home Residents.” Which is a really GeriPal topic. We’re integrating nursing home care, and palliative care … How did you get interested in this subject?

Caroline : I think I was meant to go into geriatrics. I was a very young childhood caregiver. Both my parents were in their late forties when I was born. They were part of the World War II generation. My mother was institutionalized when I was six, and my father, who was this World War II generation guy, had to raise this young girl by himself. And he ended up developing dementia when I was in middle school. I was a very young caregiver for a very long time, and then later become the conservator for both of them as they were both institutionalized. And I watched both of them slowly decline from dementia, and also get stuck in the revolving door of the emergency room, because they couldn’t get the care they need when they needed it.

And palliative care was in its infancy at the time. This was 25, 30 years ago, and really, no one knew the conversations that needed to be happening about what goals and values and preferences that they had. So, I’ve since been a clinician, a geropsychiatric advanced practice nurse, and gerontological nurse practitioner. I’ve consulted in over a hundred nursing homes in three states, and this has just been a passion of mine. So this was a wonderful opportunity to conduct the first prospective evaluation of nursing home resident palliative care needs.

Eric : And what got you interested in actually doing this study? Because, I mean, it sounds like you’ve been to a lot of nursing homes. Everything is going swimmingly, right, with geriatrics and palliative care in these nursing homes?

Caroline : Definitely not.

Eric : No? Lots of integration of palliative care?

Caroline : No, definitely not.

Eric : No?

Caroline : No, not at all. It’s actually been … My original focus was on vulnerable populations at high risk for poor care transitions. So, people that get stuck in the revolving door of the emergency room, like my parents. You know, they have a simple urinary tract infection, and land in a hospital, and our care system is so focused on … More care is often perceived as better care, and that’s not necessarily the case with older adults.

I’m part of a community collaborative of nursing homes and health systems on trying to reduce emergency room use and hospitalizations, with the Medicare focus on reducing hospital re-admissions. And we found that so much of the hospital re-admissions were focused on unmet palliative care needs. Even as I was talking with this group of 14 nursing homes about, so, how many palliative care-eligible residents do you think you have in your facility? Many of them thought, eh, maybe 15, 20 percent.

Alex : Oh.

Caroline : So this was an opportunity to actually do a deep dive and figure out … And when I said, “Well, actually,” Diane Meyer at Mount Sinai says, “Almost every nursing home admit is a palliative care admit.” And there was this gasp in the room as we started talking further. And they said, “Oh, well, they’re not all dying. They’re not ready for hospice.” And I said, “Well, there lies the knowledge gap.” And so that’s what prompted this palliative care quality initiative. We screened all 228 residents in these three nursing homes, just to see who was palliative care-eligible, what their symptom burden was, what’s some quality of life issues that they were facing, and also what the family members were facing.

Alex : And how … Let’s get a little more detail about your sampling. These are three nursing homes in Northern California?

Caroline : Yes.

Alex : Can you say anything more about these nursing homes? Community, academic? What kind of nursing homes were these?

Caroline : These are all community-based nursing homes. One was a not-for-profit facility, part of a larger continuing care retirement community. And then two were smaller for-profit facilities.

Alex : Great. And tell us how you … You said you screened people to see who was eligible for palliative care. How did you determine which of these nursing home residents was eligible for palliative care?

Caroline : That’s a real challenge. There aren’t any standardized tools out there, so we pulled from the Interact Toolkit, from Joe Ouslander’s great work. And we used a tool called the “Identifying Residents Who May Be Eligible for Hospice or Palliative Care” comfort orders. We feel that this is actually a really conservative estimate, because these are actually getting folks that are really sick. And through interviewing the directors of nursing, and the minimum data set coordinators, as well as reviewing all of the charts for all 228 patients, that’s how we came up with our determination of who was palliative care-eligible.

Eric : And can you give us an example, or describe a little bit about this tool? Who are the patients that get identified by this tool? Or what kind of questions are in it?

Caroline : It’s based on disease severity, diagnoses of dementia, heart failure, diabetes, cognitive status.

Eric : In general, do we have an idea of how long … What the prognosis is for somebody who screens positive for this tool?

Caroline : No.

Eric : Or is it needs-based? Like, they have certain symptom needs, and that’s how they screen positive?

Caroline : Some of it is symptom needs. Some of it is based on being sent back and forth, having multiple emergency room visits or hospitalizations. Being on dialysis. So, there’s a variety of different characteristics that would make someone eligible based on this tool.

Eric : Great. Can we link to it from our website?

Caroline : Sure, that’s part of the Interact Toolkit.

Eric : Great. We’ll have a link to that from our GeriPal website.

Alex : So, you screen these residents in these nursing homes to see who is palliative care-eligible. How many people were palliative care-eligible? They said 15 percent, or some people and nursing home directors said 15 percent. Diane Meyer says everybody. What did you find with the screening tool?

Caroline : So we screened all 228 residents in these three facilities, and found that 157 of them, or almost 70 percent of them, were palliative care-eligible. And that really blew the group out of the water when we revealed that.

Alex : Right. That’s a large proportion.

Eric : Did any of them disagree when you told them that?

Caroline : I think we’d been working on improving quality of care processes, and just discussing the importance of unmet palliative care needs. So when we presented our findings to the work group, they … I think it resonated. Some of them were pretty surprised, but I think a lot of them were coming around and understanding the difference between palliative care and hospice.

Alex : Yeah, so, 70 percent palliative care-eligible in these nursing homes. At least probably 50 percent of them were already getting palliative care consults. Is that right?

Caroline : No.

Alex : No?

Caroline : None of them were receiving any form of palliative care consults, or any kind of palliative care services.

Alex : Zero? None?

Caroline : Zero. And only two were on hospice.

Alex : Wow.

Eric : So there was absolutely no palliative care going on?

Caroline : The only palliative care that any nursing home resident was receiving was if they were in the hospital, and they were seen by a palliative care consultant in the hospital.

Alex : That’s bad.

Caroline : But I think it speaks to the lack of services, and the lack of providers available to provide this service.

Lynn : What does palliative care-eligible, or what did palliative care-eligible mean to you in this study?

Caroline : It meant that they had some form of serious illness, or high-level symptom burden, that required some additional support and conversations about goals, and values, and preferences.

Lynn : So, really, this is a person who could benefit from a palliative care consultation?

Caroline : Absolutely.

Alex : Well, okay, they may not have had palliative care. But at least they all had advance directives or POLST forms completed?

Caroline : There lies a very interesting finding. We found that … We looked at all of the POLST, the Physician Orders for Life Sustaining Treatment. We wanted to see what was the completion rate of the POLST, and we found that virtually 99 percent of all of our residents who were palliative care-eligible had a POLST.

Alex : Ah, there we go. There’s hope.

Lynn: Done.

Alex : Good. That’s the end of the story?

Caroline : No, not exactly.

Alex : No?

Eric : It’s like you read the article beforehand, Alex!

Caroline : But what was interesting, because we did conduct some interviews with families and residents, just a smaller subsample. And what we found was that very few of these individuals remembered ever completing this bright pink form, or having a conversation-

Alex : Is that because they have dementia?

Caroline : No, because we were even asking family members, and they said, “Oh…” Some of them, when we triggered them with, “Do you remember that bright pink form?” “Oh, I think I remember signing something.” But, again, there was just … It spoke to the fact that a box was being checked, because there was a huge push in California to complete the POLST. But I think the process is getting lost. And so there was this valiant effort to make sure that preferences were being documented. But I’m not sure that the process of actually having multiple conversations, ongoing conversations about goals and values and preferences was actually happening.

Sei : So, is this like, you get admitted to the hospital, and they put this mound of paperwork in front of you, and they’re like, “Sign here. Initial here. Check this box. Sign here. Congratulations, you’ve just completed a POLST.” That’s sad.

Caroline : Exactly. And what we were also finding is that not only was the bright pink form part of a large admissions packet that was just part of an assembly line of papers that needed to be completed, it was also just speaking to the fact that, oftentimes, these conversations might have actually happened in the hospital, prior to admission to the nursing home. And the palliative care team in the hospital might have spent five hours having a conversation and clarifying goals.

But then, unfortunately, when the person got admitted to the facility, the need to have, again, these regulations, or the perceived regulations to have to have a POLST … It almost unraveled all five hours of conversation. And that wasn’t the norm, per se, but the few instances where there were residents that had a palliative care consult in the hospital … Sometimes it was getting unraveled when they got to the nursing home.

Eric : Well, it’s really fascinating that you mention that, because a couple podcasts ago, we had Kara Bischoff on looking at how we are doing with POLST completion in our palliative care services. And what she found is that we are being consulted for a whole lot of goals and care discussions, but we actually rarely complete POLSTs.

Alex : It’s like the opposite for us, right? We’re having all these conversations in depth, but we’re not completing the POLSTs. The nursing home were getting the POLSTs done, but they can’t remember ever having a conversation. So it must not have been a very detailed conversation.

Eric : So, if only we could combine the two-

Alex : Right. Sei’s got a question.

Sei : So, I was just looking … My new favorite thing about this is Campbell’s Law. I don’t know if you guys have heard about it.

Alex : No.

Sei : It’s from a social psychologist from the 1970s, and it states that the more any quantitative social indicator is used for decision making, the more subject it will be to corruption pressures, and more apt it will be to distort and corrupt the processes it is intended to monitor. Now, this is brought up in terms of school testing. So, when you start measuring … If you use testing to monitor how things are going, that’s okay. But if you actually put teachers’ pay involved in it, and make it very high stakes, it will be much more likely to corrupt what it is being intended to monitor. And here, it feels like that’s the same thing that’s happening with the POLST completion forms. If we are just using it to monitor, then its okay. But when actually people are being graded on it, it is corrupting the process of the advanced care planning that it’s supposed to do, and thereby actually distorting what we are trying to measure, observe, and improve.

Eric : I guess the question for you, Caroline, is, in California, what is the regulations around POLSTs for nursing homes? Is it that they just have to present it to families? You can’t be forced to complete a POLST.

Caroline : No, there’s just a huge quality improvement push to have. But some of the nursing homes have taken that to heart – that every single resident needs to have a POLST. And not every single person needs to have a POLST. But-

Eric : I’ve actually heard that before from other nursing homes. “Oh, everybody has to complete a POLST.” And we have to inform them that, no, if somebody doesn’t want to complete a POLST, they don’t need to complete a POLST.

Caroline : Right. And I think what was fascinating with us is that, when you think our population of palliative care-eligible folks, 47 percent, almost 48 percent of them, preferred full treatment, 28 percent requested selective or limited treatment, and 25 percent desired comfort-focused treatment.

Eric : On the POLST?

Caroline : On the POLST. So when you think about the population that we were dealing with, and almost half of these palliative care-eligible folks were wanting full treatment, and if these conversations were actually happening, how would these numbers have changed?

Eric : I guess, going back to the larger question, the eligibility … We’re talking a lot of about goals of care, but were symptoms a big issue in this group?

Caroline : Yes. When we asked residents, almost 70 percent of nursing home residents in this population, usually or always experienced bothersome symptoms in the last week, and 82 percent of them reported that symptoms were severe, or very severe.

Eric : Do we have any idea of what kind of symptoms they were dealing with?

Caroline : It was ranging from pain, shortness of breath, constipation-

Alex : So, if a resident couldn’t respond, then the family responded?

Caroline : Correct. Right.

Alex : So, these weren’t nurses rating. These were either patients or families.

Caroline : Exactly. And what was an interesting finding was that the symptom burden was perceived differently between these two groups. Which is not necessarily unexpected, and we know this from the literature. But I think, when you think about 64 percent of families thought that there loved ones usually or always experienced bothersome symptoms in the past week, but it was much higher when the residents answered that question.

Alex : So you had the same group answer the same questions?

Caroline : Right.

Alex : So, patients and their family members?

Caroline : Yeah, and a higher proportion of residents than families also rated symptoms as severe or very severe. So, 82 percent of residents rated very severe symptoms, whereas only 60 percent of families.

Lynn : It’s a good thing the surveyors weren’t there at the same time.

Caroline : True, true.

Eric : Why is that?

Lynn : Surveyors look at similar metrics when they’re coming in and doing their inspections in nursing homes, and a particular measure is pain. And there’s a huge focus from state surveyors and other surveyors on how well is pain being managed. And this is sounding very different than the results that I hear of nursing home surveys.

Alex : So, several of us have worked in palliative care and nursing homes, and I’m just interested to hear what your perspective is on palliative care consultations in nursing homes versus primary palliative care in nursing homes. Where do we go from here? Are we ready? Should we have consultative services in all nursing homes for specialized palliative care?

Caroline : Good question, and that’s actually the area of my current focus research. We’re looking at how we can improve access to palliative care using technology, because we don’t have enough providers to do it. And we’re actually trying to improve to the primary palliative care skills of the nursing home staff, but also providing Just in Time consultation, and additional supports to families and the residents, using a palliative care consultant like Dr. Lynn Flint here.

Alex : Aha.

Eric : Lynn, are you doing this currently?

Lynn : I will be, yes, providing video consultations with patients and/or families.

Alex : Video consultations?

Lynn : Yeah.

Alex : So how does that work? You wheel in a computer?

Caroline : Yeah, a computer. An iPad.

Alex : An iPad. And then you have Dr. Flint on the iPad talking with a patient and their family?

Caroline : Yeah, and the family can be in North Carolina, they can be at home, or they can be right there at the bedside.

Alex : Wow.

Caroline : Also engaging with the nurse there at the facility, and there’s the ability to share documents, so you can bring the POLST up and have a guided conversation. And we’re in the pilot phase right now of testing this intervention, so it’s, I think, been really instrumental in helping to clarify thoughts and perceptions and reducing the anxiety of families, because one of our earlier studies found that families, oftentimes, shoot from the hip, when they panic when there’s this major change in crisis.

And because that anticipatory guidance hasn’t happened in terms of understanding what the natural trajectory of the illness is, and what to expect when someone’s dying from dementia, they oftentimes think that they need to send the person to the hospital, because that’s the best thing for them. And when they can actually see the power of the visual through the video, and seeing how Mom, who’s had three hospitalizations for pneumonia, is really deteriorating, it changes their perception on, perhaps, what they want to do.

Alex : That’s fascinating. I imagine that in-person palliative care consult would be the best, and the video consult, you lose something, right? Because you don’t have the person there, human, in the room, you lose the opportunity for a therapeutic touch. You still can have eye contact, which is an advantage of video over an audio consult. And certainly you can do it over distances, it’s more feasible, this, that, and the other. But, it’s probably … I assume it’s better than no palliative care consult. But I wonder how much is lost in that shift from in-person consult to video consult.

Caroline : That’s a good question. And we’re certainly … There’s really no way to assess that at this point, because there aren’t enough palliative care providers to be on-site in the nursing home providing this in-person … There’s certainly advanced practice nurses and physician assistants who tend to be more on-site in facilities who have some background and training in having these conversations.

But having the palliative care expert who can … We’ve had some great stories of a resident who was supposed to meet with the palliative care doc, and had to go to dialysis before we could schedule the visit. We actually followed the resident to the dialysis center with the video, and the family member, this was the first time the family member had ever seen their loved one getting dialysis, and to watch them slowly get tired as the process went on. But then, transportation showed up, and we had to end the consult. But, he went back to the nursing home, the doc was able to have a conversation with the family about goals, and values, and preferences, and then the patient patched back in when they got to the facility. So, in some respects, if this had been just an in-person visit, it would have never happened.

Alex : Yeah.

Caroline : So, the flexibility of using technology was really helpful, and you had people in four different locations being able to provide services that wouldn’t have otherwise been received.

Eric : Yeah, it reminds me of the podcast we did with Michael Fratkin, who also suggested there … It’s not just drawbacks, but there’s some potential pluses, including that it gives this sense of … Or it gives the control to patients about where they want to have this consult. Is it in their bedroom? Is it in their room in the nursing home? Is it in some other room in the nursing home where they feel more comfortable? Again, giving them that sense of control.

Caroline : I think that control piece is really important. We do have a high level of cognitive impairment in the nursing home setting, and this ends up being a major support for the families who are really struggling watching their loved one die from dementia. Hence our choice of song that Alex sang at the beginning. But, I think what’s really important in this population is that, oftentimes, it’s very difficult to get families and doctors or providers in the same location at the same time to have these discussions. And it’s sometimes held just over the phone, if that. And so, having this ability to have a video visit, and also, families that live at a distance. And I’ve been a long distance caregiver before, and you feel like, oh, can you just treat them as much as you can until I get there? That’s oftentimes, you know, the daughter that’s in … Or there’s family conflict. So you have the daughter that sees Mom on a regular basis, who lives here in the Bay Area, and the other daughter that lives on the East Coast. So, when they can both get on the same page, and see Mom, and see what she looks like, and have a better understanding of what the symptom burden that the individual is facing.

Eric : So, we have a lot of different people who listen to our podcast, but let’s say there’s somebody from a nursing home listening in. What three things, based on the research that you’ve done already and what you’ve experienced, what three things should we work on?

Caroline : I think, as clinicians, it’s really important to understand who this individual was prior to the dementia, or the serious illness taking over, and understanding what is it … And helping families understand, what is it that their loved one would want if they were able to step back and look at their current situation? Number two, understanding what’s the trajectory of the illness, and what’s their prognosis, and how can we best support them. And part of that support is also making sure that we are managing their symptoms properly.

Eric : Good. And the third?

Caroline : And the third, the POLST isn’t the end all and be all in terms of being completed. And recognizing that it’s a process, it’s not just a check box.

Eric : Great.

Alex : Lynn, I think you had something to say in addition.

Lynn : As a nursing home doc, and the reason I sort of raised the survey issue, is that it does make me think about the challenges that are inherent in doing community-based participatory research – that you are uncovering things that constitute areas for nursing homes to improve. And I wonder how you’re planning to present these results, and engage with the nursing homes over this.

Caroline : We’ve actually presented the results to the nursing homes, and it was very well received, and it was just an eye-opening experience. And they have since made substantial changes to assessment processes, and even how they complete the POLSTs, or not complete the POLSTs, if that’s the case.

Eric : So, can you give us an example of what they’ve done differently in the nursing homes?

Caroline : I think one of the things that the nursing homes have done differently is recognizing the fact that, clearly, while many of these people may be there for sub-acute rehab, many of them have a lot of symptom management needs, and many of them, more care isn’t necessarily better care. Or putting in a feeding tube in someone with advanced dementia is not necessarily the right thing to do. We’ve shared the Choosing Wisely campaign, and talking about that. There’s been a big shift, and so the hospice referrals have gone up, for instance.

Eric : Good. Thanks.

Sei : I think it’s important for us to realize that when we are able to provide better palliative care in the nursing home, one real benefit may be that there are fewer unnecessary, inappropriate ER transitions. But, equally likely is that we’ll find this huge reservoir of unmet symptom needs, which will actually require more services, more palliative care docs, more nurses, more nurses’ aids, to really take better care of our patients. And until we do the hard work to figure out what those needs are, we really won’t know what we’ll find, and how we’re going to fix that problem.

Lynn : I wonder if you think that these palliative care questions should be added to the MDS.

Caroline : Well, it’s interesting. There’s actually a question on the MDS that asks, “What’s the person’s prognosis in six months?” Or “Whether they have a prognosis of less than six months”. And in this population, we found that only 3.8 percent had a prognosis of less than six months.

Alex : As reported.

Caroline : As reported. And I think this is purely a regulatory issue, because if that box is checked, they have to be referred to hospice. And if-

Eric : They have to, or they should?

Lynn : I think they have to make a recommendation, or notify the provider. Correct?

Caroline : Exactly. So if the conversations aren’t happening, they don’t check that box, even though it’s clear that this person has less than six months to live, because that cascade of other services, and the challenges of how hospice is organized, financed, delivered, in the nursing home setting. A lot of families have to make a difficult decision to have to pay room and board, because, you know, and it just costs too much money. So they’ll opt to stay on Medicare rehab for the next 20, 90 days, even though, clearly, their loved on is dying. So there’s a lot to be fixed.

Eric : Well, thanks for joining us today.

Alex : Thank you, everybody.

Caroline : Thank you.

Eric : Alex, do you want to end with a little bit more of that song?

Alex : Sure. I’m just gonna pick it up and do the chorus here. [Singing]