Nursing homes are a tough place to do palliative care. There is extremely high staff turnover, physicians are often not present except for the occasional monthly visit, many residents die with untreated symptoms usually after multiple hospitalizations and burdensome life-prolonging treatments, and specialty palliative care – well that is nowhere to be found in most nursing homes outside of hospice. So what can we do to improve the palliative care outlook in nursing homes?
On todays podcast we talk with Lieve Van den Block about her recent palliative care intervention that was published in JAMA IM this week. Lieve led a multicomponent intervention to integrate basic nonspecialist palliative care in in 78 nursing homes located in 7 different European countries. Just take a moment to grasp the size of this study – 7 counties, 78 nursing homes. I struggle with just trying to improve palliative care in one site!
We discuss with Lieve the results of the study, her take on why they got the outcomes that they did, and her view on a path forward to improving palliative care in these settings. We also have the authors of the accompanying JAMA IM editorial with us too (that was easy, it was Alex and our recurring guest host Lauren Hunt.)
So take a listen and tell us what you think in the comments below, on social media, or on our GeriPal phone # (929-GeriPal).
Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex we have a couple people in a room and one person is skyping over from across the pond.
Alex: From across the pond, we have Lieve Van den Block, a psychologist and professor of Ageing and Palliative Care at the Free University in Brussels, Belgium. Welcome to the GeriPal podcast Lieve.
Lieve: Hello, good evening for me, good morning to you.
Eric: Thank you for joining us Lieve, and we have a couple other people in our audience. Would you guys mind introducing yourselves?
Lauren: Hi, This is Lauren Hunt. I’m Assistant Professor in the School of Nursing and Atlantic Fellow at the Global Brain Health Institute.
Evie: And I’m Evie Kalmar. I’m a geriatrics and palliative care fellow here at UCSF.
Eric: So we’re going to be talking about your paper that was just published this week in JAMA Internal Medicine on, what was the title? The title was, I got it right here. The effectiveness of a palliative care program for nursing homes in seven countries, The PACE Cluster-Randomized Clinical Trial. Seven countries of palliative care intervention, that’s crazy. But before we talk about that, we always ask for a song recommendation. Do you have a song for Alex to sing?
Lieve: Yes. I would love to hear Aloe Blacc’s song about his mother, Mama Hold My Hand.
Alex: Mama Hold My Hand, now this is a challenge little soul. (singing) Just a little bit of that, it’s a challenge.
Eric: Are we going to have a little bit more later?
Alex: We’ll have more later and we’ll do the last verse. So this is a beautiful song by way. I was playing more of it last night, starts out talking about how as little boy he would hold his mother’s hand and then he grew up and didn’t want her to hold his hand anymore. And then at the end of the song comes back to it. And I’ll just read a little bit of the lyrics here. My mom is near the end of her years and her hair is gray. Sometimes I call her to ask if she would like to spend the day. Mama used to be strong, but she ain’t now and she can’t make her way. That’s why I’m always around when she needs help. And here’s what I say mama hold my hand. I don’t think you can cross this road by yourself. So now he’s reaching out holding her hand.
Lauren: That’s really beautiful.
Eric: Is that why you picked the song?
Lieve: Yeah, it’s very easy song to understand, but still I think it touches a lot of people.
Eric: So before we go into the topic of the JAMA IM paper. I’d love to hear from you, how did you get interested in palliative care and nursing home settings to set us up for this paper.
Lieve: I think it started when I did my PhD. I did my PhD on palliative care in primary care doing epidemiological research, mainly using GP networks to register deceased patients. And in the data that I analyzed, then I was constantly confronted with these underserved groups in palliative care. So people with dementia, people who are aging, and of course, people in nursing homes better to come together. So I think that’s where the seed was planted.
Alex: And you’ve done some preliminary work on this intervention. Maybe you could tell us about that preliminary work.
Lieve: So the intervention originally was developed in the UK and it was called the route to success. And so there was mainly a lot of practice-based evidence and some people looking more at quantitative and qualitative research, but not really in RCT comparing this route to success with standards care. And so a lot of people in practice we really felt this program was doing something in the UK. And a lot of people abroad said yes, we can use this in the setting. So that’s when we started to do the translation in all these different countries and cultures and we adapted the program cross country, and then call it the PACE Steps to Success program.
Alex: I wonder if you could tell us a little bit more about what are the … So my understanding is this is a train the trainer program, and I’m interested in hearing more about why you chose that particular approach to a palliative care intervention in nursing home settings.
Lieve: I think our philosophy comes from the idea that you can have specialists or specialized palliative care services coming into nursing homes at certain moment in times when it’s necessary for people with complex issues, but that you definitely need a more non-specialized general palliative care approach for the settings for all residents living and dying in the settings. And so I think the main idea is that all people in these homes really need some palliative care competencies. That’s the idea behind the train the trainer approach to really get it on the ground with people delivering care every day.
Evie: So this was a multi component intervention training the trainers, so I was wondering if you could tell us a little bit about what the actual intervention was and all the different parts of it.
Lieve: Yes, it’s what you call a complex, I would say a highly complex intervention because we basically said you have to train other people. So you have to do it step wise. And you can’t train everything all at once. So the program was developed around six steps, starting with advanced care planning and stopping on reflecting about this and everything in between. So it had six steps implemented every month, a new step. But we had a preparatory phase before that and a more consolidation phase at the end. And the idea was that a trainer would help people in the facilities to deliver this care and in the beginning, he would facilitate more and at the end, they would facilitate less. And then within the facility, we had these coordinators, we call them PACE coordinators two or three, for example per nursing home, and they really needed to champion palliative care. So they were trained by our trainers, and then they trained other people with the support of the trainer.
Eric: So let me get the train the trainer right because there’s a lot of training of the trainer of the trainer.
Lieve: I know. And we have national trainer too, so sorry, a lot of training going on.
Eric: So you had multi-international trainers that were training country level trainers that were training nursing home level trainers. And those trainers were training all the nursing home staff that was the goal. Train all the nursing home staff in primary palliative care. Did I get that right?
Lieve: Yeah, they started with the care assistance and the nurses, of course on the ward. And the idea is to really have a palliative care culture throughout the whole nursing home. The focus was more on care systems and nurses and the trainer in the beginning and a more intensive role than at the end. So it wasn’t like you do a two day training outside of the nursing home, and then the PACE coordinators need to do it themselves in the facility. No, it was really based on intensive facilitation, you might say. So really going there every two weeks, having phone contacts, et cetera.
Alex: And what were the main topics that they were trained in?
Eric: The six steps to success, Alex?
Alex: What were the steps?
Lieve: So the first step was advanced care planning. They didn’t call it that way, they call the discussions about care and future care. So every step also had tools link to it and a training part. So the first was advanced care planning. Then there was a focus on assessment and review of people’s conditions. So they used a very simple map trying to map how people were doing over the course of their stay in a nursing home in terms of their functional status mainly. But it wasn’t a very difficult instrument. It was more to visualize people’s functional status, whether they fell whether they were hospitalized, issues around family were also sometimes on the map.
Lieve: And then step three was more about the coordination of that care. So these maps were used during multidisciplinary meetings where you discuss the residents, you also discuss their advanced care plans, you discuss wishes important elements of the family, GP orders, DNR, these types of things. The fourth step really focused on assessment of symptoms, but because of the fact that the intervention already was very complex, we set within the consortium, we’ll start with focusing on pain and depression because those were the two that were very important to address. That’s where they started with the assessment and treatment of symptoms.
Lieve: And then step five focused on the last days of life. So identifying people who are really in the last days of their life and seeing what needs to be done. And then the very last step, step six was more if someone dies, can we reflect on that care? Did everything go well or not? And what can be improved in our processes of care for the future, so more reflective debriefings, you might say.
Eric: And you roll this out in seven different countries. And I’m guessing like for some of it like advanced care planning, there’s a variety of different laws and potentially cultures around advanced care planning. How did you get over that hurdle?
Lieve: Yeah, I think that was the main issue when we discussed the cross cultural adaptation. So the documents that we used as step one in the advanced care planning, they were really adapted to the country laws. And so, it was very important that the legal information was correct. And that we also didn’t push people to do things they were not used to doing. For example, in Italy, that’s a country where advanced care planning and especially advanced directives is not that usual. And sometimes staff really is afraid to put things down on paper. So that meant that a lot of the elements of the first step went into the communication element. But you are right. It is very difficult, I think to truly understand what’s happening in the different countries, also as a coordinator, yeah.
Lauren: I just was curious who else was involved in the training? You mentioned care assistants and nurses. And I’m just wondering if physicians or nurse practitioners were involved, especially for advanced care planning.
Lieve: Yeah. I think what’s very important to know is that in every country, there is a huge difference who is actually working and living in these facilities. So you only have one country that I know of that really has physicians on staff, which is the Netherlands. And those were not included in our study. We focused on the nursing homes where GP visited, so there were never really physicians on staff delivery care. You did have countries like in Belgium, where you have these coordinating physicians who are sometimes in the nursing home and responsible for implementing changes, but not really for patient care. It’s always the GP who’s still responsible.
Lieve: So yes, we try to involve them. They are the ones that are invited to these multidisciplinary meetings and nurse practitioners also if they are there in a country, but for example, in the UK, you only get care assistance mainly. While in the Finland, you had a lot more nurse practitioners. So, that’s dependent on the country. But huge barrier, of course, and issue is getting the GPs to these meetings. If your GP was 20 or 30 patients in a nursing home, you’ll come but if you only have one or two, and then you have like 50 GPs coming into one setting, then that’s a struggle, but we knew that beforehand that would be a struggle, but still, yeah.
Eric: And that’s similar to the way nursing homes run in the US by and large, you rarely have physicians on site and most nursing homes are run primarily by the staff in that setting. And just for our listeners, GP is general practitioner and is kind of the equivalent of a general internist, primary care doc in the United States, I would say.
Lieve: And would you also say for the United States that in most facilities, you would have a few nurses but most of them would be less highly educated or not?
Eric: I think we have a face a lot of challenges and I’m guessing you probably face those same things is that nursing homes are staffed and there’s some variety of different staffing models and nursing homes. So you have RNs, you have LVNs, you have a lot of different people. There’s not a lot of physician interaction in most nursing homes. And I think that the staff turnover is incredibly high. So whenever I see educational intervention, a train the trainer model, the biggest challenges that you’ve just trained somebody and six months later, there’s new people that you need to train. And I’m wondering if you saw kind of similar things with high staff turnover in the seven countries?
Lieve: Yeah. Yes. We also knew that beforehand, of course, and we know from talking to people that usually the ones that are trained are the ones that leave the soonest because they’re the ones who get better deals in other facilities. I don’t think that staff turnover was higher or lower in the trial, and it would be when you don’t do an intervention. The hypotheses of some of the consortium members was that they thought it would actually help to increase staff satisfaction and to increase staff well being themselves because they could focus more, they would discuss more the issues that are relevant to residents, which is most of the time, also the reason why they chose the job. So the person centered approach versus the task oriented approach, that’s what most people like.
Lieve: But still, we had a few of PACE coordinators in a few of the facilities leaving or getting ill. So I think that’s something you can never prevent if you do implementation research, or really try to implement into real practice. Yeah.
Lauren: I was curious about doing the study in seven different countries, all these different people. What was that like to try to wrangle all of those players involved? It seems very challenging. So I was just kind of curious, but also really important and as we’re moving forward in this field to think about how we can deploy these big intervention so I’m curious about your experience was like?
Lieve: Yeah, I really think that one of the most important things is the people that are involved in the study. So we had people who in the consortium, in all these different countries, who some of them were geriatricians, some more people from the palliative care field, but every team had people working in the field, so clinicians. And that’s really very relevant or important otherwise you won’t be able to get where you need to be in these countries. But I think the main issue is not the differences between the countries. I think the main issue is the differences between the facilities. So I do feel that every nursing home is a micro cosmos at itself. And it operates according to certain principles. And so the job of the trainer is very difficult because he or she needs to adapt to that context. I think that is more the issue more than the country, the different countries.
Eric: Okay. We got our listeners are left hanging. Did it work? Seven countries, tons of trainer trying to do primary palliative care to all nursing facility staff. Did it work?
Lieve: So our primary resident level outcome didn’t change. We had comfort at the end of life using the comfort assessment well dying skill for people who know that skill. It’s a very, very good, it’s a validated scale to use in these settings, and it didn’t change at all between intervention and control pre-post. We also had a staff level primary outcome, which was knowledge of palliative care. There you did see some difference, but it was very small. You could say it was this basically significant but it was a very small difference. So we feel that clinical relevance of it is too small to say that we really made a difference.
Lieve: Our secondary resident level outcome that was focused on the last month of life and more on quality of care using an instrument called the quality of dying in long term care. And there you did see an effect, which was medium effect size.
Eric: So it sounds like maybe a little bit mix. So when staff reported comfort in the last week of life, we didn’t see a difference, when family members reported comfort in the last week of life, no difference, maybe some small improvements and knowledge from the staff and palliative care, but maybe a little farther outcome or improve quality of care in the last month of life. We’re seeing some benefits. Is that right?
Lieve: Yeah, that was a secondary outcome we had. As you can imagine a lot of discussions on what would be the primary and what would be the secondary outcome?
Lieve: And we thought we chose for the most lethal one, which is the dying in the end. But it was the secondary outcome where we saw an effect.
Eric: So it’s interesting, because I feel like, at least in the US a lot of the focuses on burdensome interventions at the end of life, ICUs, hospitalizations, a lot of utilization data and I didn’t see any of that in your data, in your study. Was there any data? Was there any thought about including that or was that specifically not the focus of this paper?
Lieve: No way did look, we had a lot of data gathered that wasn’t included in the paper yet, but the main reason for not choosing hospitalizations is that in some countries, the hospitalization rates are not that high and that if you would really want to find the difference, then you would have to increase your power enormously. So that would mean a lot of additional nursing homes to include to really find that difference.
Lauren: So I thought it was really great that you guys chose a patient centered outcome as your primary measure, even though you didn’t find in effect. I think it’s really important that we focus on things that are important to patients and families like comfort at the end of life. So I was wondering if you could talk a little bit more about why you think you got the results that you did? And what do you think were the biggest reasons why you had a negative result and what you would have done differently had you been able to do this again?
Lieve: The last question, I don’t know if I can answer that. Maybe I can have your ideas about it, that would be helpful. But in the paper, we tried to describe three main issues that was, first a very complex intervention, a lot of steps to do in one year, it sounds a lot but for nursing home, it’s not a lot of time. Secondly, well because you have such a complex intervention with so many different processes of carrier focusing on, you have to choose one primary outcome. So the match between your outcome and your intervention is very difficult. And then third, really importantly, is the implementation. So we didn’t publish the implementation data yet. It’s a very thorough process evaluation using the RN framework. I’m hoping to get it published in a few months too, it’s in under review. And there you definitely see the variability between the different facilities, not necessarily countries, but also really facilities where we had better or worse in inundation of some of the steps.
Eric: So let’s break part those a little bit. So I forget in this study, do we have any data at all as far as how many of these nursing facilities actually implemented generally the six steps? Do we have an idea of the amount of trainers that every facility have a trainer?
Lieve: Yeah, yeah, definitely. So the basics they were respected in all countries. So we had two or three trainers per country. And each one of them had about three to four nursing homes they attended to and all of them really started to process. But you could see in terms of attendance rates, for example of trainings, that they were better in the beginning than more in step five or six and that the fit between the trainer and the facility wasn’t always perfect. And there you could also see whereas implementation. But there was some training going on in all the rooms but not enough to reach effect on our primary outcome.
Eric: All right. Let’s talk about the outcome real quick. So was there a mismatch between the intervention and the outcome? The primary outcome was comfort in the last week of life as graded by the staff. However, a lot of this intervention was good primary palliative care, which is a lot more than comfort in the last week of life. What are your thoughts that that mismatch? It was there a mismatch in your mind?
Lieve: What do you think?
Eric: I think yes. I think I’m actually much more interested in the quality of life in the last month of life. I’m potentially interested more in how family members kind of viewed quality of life.
Alex: Interested in whether communication preferences were elicited, documented, whether treatments match patients goals, whether rates of depression or pain were reduced generally not just at the end of life.
Lauren: And in the qualitative experience of the staff and the families. And maybe it’s something that’s really difficult to measure in the quantitative scale, but when you drill down and ask patients and families about what their experience was, then you can start to see the effect.
Alex: And if you would have to choose one, which one would you choose?
Eric: The one that was positive. [laughter]
Lieve: But of course, you wouldn’t agree with everything that you were saying. And we did measure a lot of the things that you’re saying too. So it’s always a trade of what would be the best outcome and then you choose one in the end because we felt if we can have an effect on that, that would really make a difference. We also knew that it could differently could be different between countries because we did an earlier study comparing more cross-sectional data collection comparing the Netherlands and Belgium, the nursing homes with the nursing home physicians in the Netherlands and the nursing homes in Belgians with the GP and you did see a clear difference in the outcome measure between the two.
Lieve: The most tricky thing in this cluster RCTs is the fact that you have to choose one primary outcome. So maybe that’s a more methodological discussion, but that’s also one that we are having.
Alex: It’s very important question. I guess one lesson that you already articulated is that this multi component complex intervention maybe that in order to move the needle on A primary outcome, you need to have an intervention that is more clearly focused on that particular primary outcome, rather than trying to sort of lift all boats cross the full spectrum of palliative care equally.
Lieve: Yeah, I agree. And I think some of the studies that you need for example, here listen has also done in our country focusing only on advanced care planning and trying to implement that using a train the trainer approach. But we’re also going to start up a new intervention, only focusing on the last days of life in Belgium only. That’s also where we are trying to say, okay, let’s focus more on one component and then identify a better outcome. Yeah.
Eric: Yeah, but it comes at a cost. But the reason I love this paper, because it’s about the huge need that we see as far as palliative care in nursing homes, it’s that that nugget we haven’t yet cracked in palliative care is how to deliver effective primary and secondary palliative care in nursing facilities. And this is the biggest randomized control trial that we have on it and it still shows despite all this effort, we haven’t moved the needle that much and part of it maybe it’s more of a systems issue than it is a training issue or is it that we just haven’t even cracked the nut on how to actually deliver primary palliative care in any setting?
Alex: Or the thing that our listeners don’t want to hear, nor do we palliative care is not effective in nursing home settings or could it be true?
Lauren: I don’t believe that.
Alex: Definitely not that, any method problem.
Eric: Give me one example of educational intervention focus on primary palliative care that was effective?
Lieve: In the nursing homes?
Lauren: I mean, there have been observational studies that have shown effectiveness.
Eric: Randomized controlled trial?
Lieve: Well, we have one in Belgium, but that’s acute geriatric hospitals, does that count.
Eric: And it was an educational intervention on primary palliative care, that counts, I’ll grant that to you.
Lieve: It focused also on the last days of life. So it really wants to change practice within the hospital, focus on one component, but really on their care and not bring in specialists care. So I don’t know if that counts for you, but that was published in The Lancet, so was a good paper. Yeah.
Alex: And it’s some of these interventions are not billed as primary palliative care, but we would certainly claim them and consider them primary palliative care. For example, Doug White’s interventions in ICU settings, VitalTalk with oncologists and other specialists.
Eric: There one randomized controlled trial, I loved VitalTalk.
Alex: The conversation guide.
Eric: But all of the other ones I can think of whether it be like you talked about, like Rebecca Sudore’s Prepare For Your Care – that’s not just about education.
Alex: That’s patient-focused more. Yeah.
Eric: It’s about focused on the patient. If you look at like, we’ve had navigators on, good primary care intervention. Again, focused on patients, not training staff. We’ve had Randy Curtis on talk about kind of his intervention on priming patients and physicians, but there’s like a larger scope and when we just focus on one aspect, educating healthcare providers, it just doesn’t seem to have that much of a bang for their buck, maybe because we just forget everything once we’re taught. Or there’s some we have to think bigger.
Lauren: I also think it’s about how you pay for it, because I think that if people are paid to do it, then that sometimes moves the needle.
Eric: And we’re measured whether or not we’re actually doing it.
Lauren: Right. Exactly. And there’s quality measures associated with those.
Lieve: Did you want to say more than more about that. So Lauren wrote an editorial that accompanies this paper and JAMA internal medicine about the challenges in this study, the opportunities and also some of the implications for policy, particularly around measurement, mostly within the US, but I don’t know if you want to comment internationally or primarily the US.
Lauren: Yeah. I mean, I think that once you start making these measures mandatory, then the organizations will have to respond. And also, if there’s incentives or disincentives to measure things or change your practices, then people will definitely respond to that. I think the concern is that you end up with the situation where people are teaching to the test to some degree, so their measurement practices are really just to get the A and not so much about the actual quality of care. So that’s kind of the-
Lieve: Yeah. You mean the big focus.
Lauren: Yeah, like a task oriented, which you see comes up with the minimum data set in the United States and some of these other quality measures that are coming down the line with palliative care.
Alex: But what are some concrete examples of quality metrics that could be incorporated into the minimum data set, which is a data set that’s used the United States to sort of administrative used to assess quality and some people use it for research purposes, but they have some measures, which we could call palliative care type measures, but there could be more could you say?
Lauren: Yeah. I mean, well, the VA has a bereaved family survey that all residents of nursing homes in the VA, their caregivers complete after the person has died. And so you could incorporate something like that into all nursing homes in the United States, not just VA nursing homes. And then, the MDS includes a lot of measurements are pain and depression but not so much about end of life quality experience.
Alex: And how about in Europe Lieve, what sort of quality metrics exist or is quality assess broadly across nursing homes? Are there sort of carrots to entice nursing homes to perform better?
Lieve: Yeah, in a previous study as part of PACE, we also met in 29 countries and that was published in JAMDA. What the regulatory frameworks and the financial frameworks are in all of these countries and whether in the countries there are palliative care, frameworks or regulations. And there you see a huge difference. You really see countries where there are things and countries where there’s nothing at all and it’s not because there’s not a lot that the qualities that. So it’s not necessarily linked to each other. Like in Finland, you have highly skilled staff but less focus on palliative care, but often better quality than for example in Poland or in Italy
Lieve: In Belgium, we do have quality metrics, and that’s what I was also wanted to highlight. I like the idea of quality metrics, but I also dislike the disadvantage that it might have of people using it as a tick box. So for example, in Belgium, we have one that’s called Do you have a plan in place for the end of life? And then all nursing homes have to register? How many people have their residents have this plan in place?
Lieve: So what facilities are not now starting to do is when people come in after six weeks, their plan is in place. So everyone is forced to fill in documentation. And that’s the more qualitative evaluation that we have from people saying, why do we get all these documents? So there’s a downside linked to these inspection type of indicators. So I was also wondering couldn’t we think about indicators like, do you have quality improvement initiatives on palliative care issues? And what are these quality improvement initiatives? And once you have these, that might be a good indicator.
Alex: So more focused on process than outcomes.
Alex: I got a question, this my last question. When you think about improving palliative care in nursing facilities, like what do you think is going to move the needle here? What do you think is going to be the big bang for our buck? Or is there one thing or do we have to do all these other studies focused on like small components of it? Or do we need specialized palliative care in nursing facilities and figure that out? Maybe through telemedicine or something like that.
Lieve: In my opinion, we need both. We need a general approach and you need additional specialists care coming in. The number of people with dementia is really enormously rising in nursing homes, the length of state is decreasing a lot. So we do need specialist advice. So it’s probably a model of the two. But really to change the outcome of a trial, I’m thinking that maybe we should learn more from the implementation science fields. There was a really nice review in PLOS One from an author, which I don’t know. It was Lau or Loe and they analyze 60 interventions, not on palliative care, but on infection falls all these types of interventions. And they looked at staff education and does it change resident outcomes, which ones really do and, which ones don’t. And they said there is no magic bullet.
Eric: Darn it.
Lieve: If you look at the effectiveness, the ones that are effective are the ones that are more focused on the delineated elements and not the ones that are focused on broad cultural approaches. Their conclusion was of the review.
Alex: Yeah. So there it is, again, the need for specificity and sort of honing in and targeting on one key element rather than the broad approach.
Lauren: I think we also just need to fully recognize that nursing homes are a place that many people end up dying in, which I feel like is something that most people are in denial about. So I was really glad to see that you had done this work, Lieve, because I think it’s really highlighting this important issue that nursing homes are a place where people die and palliative care is needed in these settings.
Lieve: Yeah, I also fully agree I think even if the trial is not effective in its primary outcome, we did change a lot in terms of highlighting the profile of palliative care in these settings.
Eric: Yeah, I agree.
Lieve: In organizations that haven’t been talking about palliative care they are now. So that’s really one of the benefits that we had from the study.
Eric: Do any of these organizations in nursing homes have access to specialty palliative care? Answer probably would be no here in the US, or the vast majority of…
Lieve: Yes, there is access in some countries. In Belgium, for example, there is access.
Lieve: But not in all, some do. And don’t you have the hospice care in the US?
Eric: We do have hospice care for individuals with a prognosis of less than six months, often kind of underutilized in nursing facilities and there’s a lot of … You actually wrote about that in your commentary. What did you say in your commentary Lauren.
Lauren: So there’s actually a lot of issues around hospice and nursing homes because there’s actually been a huge growth of access to hospice and nursing homes over the past 20 years. And that has brought on a lot of scrutiny, actually from regulators concerned that a lot of these patients they don’t actually need the extent of hospice services that are provided. And so there’s some concerns around fraud and abuse. But when I was thinking about this, hospice has providing palliative care and nursing homes for a long time. So I don’t want to throw out the baby with the bathwater here. It’s more about incorporating palliative care into this continuum, with palliative and hospice care and learning from what hospice has already figured out around providing palliative care in the nursing home setting.
Eric: Yeah, just thinking back to Alex, we had a podcast with Lynn Flint and Alex about their article rehab to death. And a lot of what we see also in the US is people being discharged from hospitals to nursing facilities where they’re going for rehab, but then most people would see that the chances of effective rehab may actually be negligible or they go through this churn through the health care system, as [Joan 00:39:31] Tina would say, where they get discharged back to the nursing facility and eventually over the course of their rehab they die. Is that a good summary Alex?
Alex: Yeah. The cycle in the spiral, I think is what the way that Lynn characterized it. Could you say something about the state of hospice integration or lack thereof, into nursing homes settings in Europe, that’s one. And then the second part of this two part question is, in the US, as Eric was just saying, the population of people within nursing homes has shifted dramatically over time. And it used to be long stay residents who would be in nursing homes for years, until the end of their life. And now there’s a increasing proportion and perhaps the majority of nursing homes which are filled with patients who are post discharged from the hospital. They’re there for skilled needs, often rehabilitation but also other skilled needs. So that there’s been a shift in what sort of nursing home means.
Lieve: Yeah. So your first thing on accessing palliative care, there is no answer for the whole of Europe. So if you look at the JAMDA paper you will definitely see there is a huge variety. In Belgium for example, we have a reference nurses for palliative care operating within the facility, but they don’t always get the time to do it, you have the label, but maybe not the time. And you have access from services from outside coming in. In some countries, you don’t have anything at all. So there’s a huge variety, depending on the tradition in health and social care, probably.
Eric: And there’s no hospice in Europe is more of a freestanding facilities where patients reside near the end of their life. Is it? Or is it also a service that can be provided in the home setting or in nursing homes?
Lieve: Yeah, the hospice that you know, we don’t have in Europe in the same way. If we talk about hospice care, it’s more in the UK, for example, or in other countries, not in Belgium. There are palliative care units linked to hospital more focused on cancer, for example, we have those but I think the model is very different. Also the eligibility to get into hospital is very deep. You still have a clear boundary actually between hospice and not hospice, and that’s less often the case in many other countries. Yeah.
Eric: And then, Alex’s second part of the question. Are you seeing the similar shifts from long stay to a short stay like rehab?
Lieve: Yeah, we did the descriptive epidemiological study as part of phase two in six countries, where we drew representative samples of nursing homes in every country and then looked at the deceased residents and staff characteristics and the characteristics of the facility. The length of stay, on average was between five and 25 months or something like that. So people are staying only for five months in facilities in Poland. That’s very short. While in Belgium, it’s 25. But 10 years ago, it was maybe double.
Eric: Wow, yeah.
Lieve: So definitely see a huge decrease in length of stay. And the numbers of people with dementia if we look in five years In Belgium, they increase from 40% of all people dying who have dementia to 60%.
Eric: Yeah, really seismic shifts and what we’re seeing in nursing home care.
Eric: Well, I want to thank you so much for joining us today.
Alex: Thank you so much.
Eric: I loved your article.
Lieve: Thank you for the invitation. Lovely to meet all of you.
Alex: Good to meet you.
Eric: I don’t think I’ve seen a seven country palliative care study.
Alex: Primary palliative care, that’s a good point.
Alex: Not much anywhere in terms of primary palliative care much less seven countries. It’s impressive.
Eric: Yeah, just incredibly impressive. Thank you for everything that you do for the field. Before we end maybe we can get a little bit more of Alex singing, what’s the songs name again?
Alex: Mama Hold My Hand. Let’s try the last verse here. (singing).
Lieve: Wow, you nailed it.
Alex: Something like that.
Eric: Well again, very big thank you for joining us today. I’m so impressed with your article and what you’ve done here. Thank you to all our guests, hosts, and to all our listeners for your support, especially those who filled out the GeriPal survey and who called our listener call in number for our GeriPal hundredth episode, Alex it’s coming up.
Alex: This is 99. This is 99.
Eric: It’s close. This is 99. You still have time if you’d like to call in 929-GERI-PAL, that’s 929-GERI-PAL, leave your comments about our podcast and if you have a second please on this 99th episode rate us on your favorite podcasting software.
Alex: Thanks, folks.