Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, we’re live in person, at least part of us, and we got some people on Zoom. This is a hybrid.
Alex: The first time in person since the pandemic.
Eric: Who do we have with us today?
Alex: We are delighted to welcome Sheryl Zimmerman, who’s a professor at UNC Chapel Hill, and co-directs a research program on aging there, and is also co-editor in chief of JAMDA. Sheryl, welcome to the GeriPal podcast.
Sheryl: Hey, I’m really glad to be here and to be able to see you all first time in person for a long time.
Alex: And we’re also delighted to welcome back to the GeriPal podcast Kenny Lam, who’s assistant professor of medicine at UCSF in the Division of Geriatrics. Welcome back, Kenny.
Kenny Lam: Thank you so much, Alex.
Alex: And our most frequent host / guest on the GeriPal podcast, Ken Covinsky, Professor of Medicine, UCSF Geriatrics. Welcome back.
Ken Covinsky: Great to be back at GeriPal Studios.
Eric: So, we’re going to be talking about assisted living facilities. We’ve almost had 250 podcasts, and we have not directly talked about assisted living facilities, so I’m kind of excited. We’ve got a, Sheryl published a great article, and Kenny and Ken published an editorial for that article. And which journal again?
Ken Covinsky: JAMA Network Open.
Eric: JAMA Network Open. Okay.
Kenny Lam: Yeah, yeah. JAMA Network Open.
Eric: But before we do, we have a song request. Luckily, it’s not going to go to Ken Covinsky, because he would do a Chicago Cubs song. [laughter]
Alex: Kenny Lamb.
Eric: Kenny, do you have a song request?
Kenny Lam: Yeah. I have a song request. I’d like to request How to Save a Life by the Fray.
Alex: And why?
Kenny Lam: Well, I was trying to think I wanted something a little contemporary. I was listening to some of the other podcasts, and I know people have been giving you a lot of challenge songs, but this one I think is a little bit easier to play. And I also think it’s a little bit topical. The songs about how saving lives is actually a pretty complicated business. And even though you can enter into it with the best of intentions, it takes a little bit of thought in order to do it well.
Alex: Good choice. All right. Here’s a little bit.
[singing] “When you say we need to talk, he walks, you say, sit down, it’s just a talk. He smiles politely back at you, you stare politely right on through. Some sort of window to your right, as he goes left and you stay right, between the land of fear and blame, you begin to wonder why you came. Where did I go wrong? I lost a friend somewhere alone in the bitterness, and I would’ve stayed up with you all night had I known how to save a life.”
Ken Covinsky: That was beautiful.
Alex: Thanks, Ken.
Eric: What was that, mid-’90s? ’93?
Alex: ’90s. Yeah.
Ken Covinsky: Or later. I think a little later than that.
Alex: Yeah, I was going to say aughts at least.
Ken Covinsky: Yeah.
Eric: aughts ?
Ken Covinsky: aughts.
Eric: Wow – I’m losing track of time. Well, let’s dive into this subject. Assisted living, I can’t even say the word. Facilities. RCFEs, boarding cares, nursing homes. Sheryl, what the heck is the difference between all these?
Sheryl: Oh, and I love that you stumbled over that word because people who’ve been working in this field, assisted living facilities, and I mean this seriously, they call that the F-word. These places no longer like to be called assisted living facilities because that’s kind of got that institutional feel. So, their preference is to be called communities. So, I’ll try to resist correcting you during this podcast, but I try to be really diligent to using the word community. That said-
Eric: Just community? Or a retirement community or what? Community seems a little bit too vague and over-broad.
Sheryl: Well, the difference between a facility versus a community is meant to be, the facility really does have an institutional connotation to it, whereas assisted living began, it was supposed to be and presumably still maintains a good part of a social model of care as opposed to healthcare model of care, which is why we’re here talking about this in the first place. And so, the facility was not the way that these places wanted to be represented or conceived.
Eric: So, it’s an assisted living community. Oh, I get it now, because I was just thinking it was just community, so it’s not an ALF anymore. It’s an ALC.
Sheryl: If you were going to shorten it, that would be a preferred shortening. That’s correct.
Eric: And how is assisted living community different than a nursing home?
Sheryl: Two key ways. One is they’re not licensed as a nursing home, and they’re not federally regulated. Another key way is that broadly speaking, they don’t have to have a nurse, whereas nursing homes pretty much have to have a nurse. And those would be the biggest differences. I mean, of course there’s a whole host of others, and I will point out, even though they’re not federally regulated, every state does regulate them with a whole lot of variability. As you just pointed out, board and care. I mean board and care, domiciliary care, there’s memory care names that go along with them. They’re licensed very differently. There’s about 350 different flavors, if you will, of what assisted living looks like across the country. Biggest differences, not licensed as a nursing home, don’t have to have nurses.
Eric: And who pays for assisted living communities?
Sheryl: Largely the people who live there as opposed to government funds.
Eric: Yeah, Ken, it’s a big business nowadays, isn’t it?
Ken Covinsky: Yeah, I mean one of the things that I worry about with assisted living is that it seems more and more of them are taken over by these big chains, and they’re for-profit models. And I’m going to propose a math equation, Sheryl, that poses one of my concerns about assisted living. So, you have the most vulnerable people in our community who are now subject to the whims of these for-profit companies. And that’s why I think your article is so important is that we need standards. So, here’s the math equation.
Profit equals rent and fees from the residents minus cost of services. So, you have these people who can’t really defend for themselves and argue for themselves. And there’s this huge financial incentive to extract as much resources from them as possible and give them as few services as possible. And I know there’s many communities where there’s people in charge who have ethics and principles, and that’s what guards you and protects you. But when you have corporate offices running these places that are often detached from the people they’re caring for, I worry a lot about that equation.
Sheryl: And of course that’s the same equation in nursing homes as well, isn’t it?
Ken Covinsky: Yes.
Sheryl: Yeah. Maybe one of the checks and balances here is that for the private pay market, people are choosing where they’re staying and where they’re not staying. So, they’re voting with their dollars. I mean, I will say that it’s a small percent, but I think the majority of states now, there is some Medicaid support for assisted living for the services. Still, it’s very fair to say that over 80%, it is a private pay industry. But yeah, it’s a market for sure.
Eric: So, let’s get into that. So, we have these places, assisted living communities. They’re private pay. It sounds like over the last 10, 15, 20 years assisted living facilities have basically become something like a nursing facility often for people who have means. So, if you have money you can pay more and more, right? At these facilities to get additional, additional support, and support that starts looking like a nursing home. Is that right?
Sheryl: To a certain extent, that’s right. The state regulations will state who can live there and who can’t live there, because the regulations still are putting some parameters around maintaining safety and looking out for people who are vulnerable. And in some cases-
Eric: But you can start off, right? You can start off let’s say bare bones. So you have your room and board, very little help. You’re independent, drive in and out, and the more help you need, so for example, now you need somebody to help with medication administration. That’s an additional fee. Is that right?
Sheryl: In some cases. In some cases it is an add-on. There’s so many different ways that this is done. But yes, some people could use, some communities could use it as part of the basic services of there’s, it could be an add-on.
Ken Covinsky: I think often, if a good analogy, Eric, might be Spirit Airlines, so that you have your base fair, and then that carry-on bag. And if you want to talk to somebody at the airport counter. I mean, I think there’s some where essentially every little thing you get is extra.
Eric: That is my own personal and professional experience, at least here in California, where you have your base rate. And every additional support that you need is extra. It sounds like some places do a maybe not that, but my experience with the vast majority are you pay extra for every additional support structure that you need, because again, that’s the structure of how these are made, where the more help you have or you need, the more you’re going to have to pay. Does that sound right?
Sheryl: I think some things certainly can be bundled. But there are different models, and you are right. Many of them do have, I mean, some have tiers, some have based on single services, some have intensity of services. So, that old mantra that goes for a lot of things. You’ve seen one assisted living community, you’ve seen one assisted living community. But your point is well taken. Often there are extra fees for extra services.
Eric: Yeah, because that matters When we start getting into questions around if we’re going to go with this, the market decides, so people will use their money to decide where to go to. Is that by the time they’re often needing additional support in these assisted living facilities, it’s very hard to move to another home in another location. You’re kind of, in some ways, kind of… What’s the right word, Ken?
Ken Covinsky: You are a little stuck.
Sheryl: A captive audience?
Ken Covinsky: Moving is very hard. So, it’s not easy for somebody who, part of the reason you’re in assisted living is because you’re immobile. And Kenny, I know you’ve thought about this issue, and I mean, I’m interested in your thoughts about this, is to what extent is it an economic model of free choice?
Kenny Lam: Well, I wanted to start also by saying that I really relied a lot on some of Sheryl’s other work explaining that it’s very hard to define assisted living. And I think we have to be careful about painting it all with one brush, because there are definitely some very good organizations out there that are doing well. And I did put that at the end of the commentary to point out that there are a lot of groups that are doing very hard and diligent and valuable work, and there are also bad actors thrown into the mix.
And I think I relied on that when I was thinking a little bit about how to frame this that, yeah, it was a matter of choice. But I also feel like it’s really, it’s a weird market, because when you are going to assisted living, more often than not I feel like it’s not your first choice. The first choice almost invariably across most of the population, you look at sort of survey data, over 80%, 90% of people would rather stay in their own communities or their own homes if they could.
And so, when you’re making this choice, it is already a second choice. And that’s where I feel like these market forces become very difficult to… They don’t work so well, because in some ways you’re not getting the thing that you want. You’re navigating this phase of life that you never necessarily were prepared for or maybe you didn’t want to go in the first place. And that’s why I thought Sheryl’s paper was so interesting, because then you’re now asking the experts who have seen this happen again and again, what are the things that should be important or shouldn’t be important for at least your health and your wellbeing?
That was the impression that I got was the overarching framework for this Delphi panel. So, wrangling a really complex topic down, but trying to explain or help people understand what is this phase of life that they’re going into.
Is that fair? I mean, I only read your JAMA commentary after I wrote my editorial. And I was like, “I think I did justice to all the things that maybe you wanted to say that you didn’t have a chance to say obviously in this Delphi method paper.” But…
Sheryl: No, thank you for that. And it is really important to understand the differences between assisted living and nursing homes, to understand the variability within assisted livings, to understand some of the same worths that we have in nursing homes we have an assisted living, but there’s also a lot of really well-intentioned people who are working there for a reason, because they actually care about providing good care. And there really are people who need this level of care, who don’t need nursing home level of care. So, we do need to be careful not to disparage a whole industry just because it’s got some inherent problems that are inherent. I was about to say with our system of long-term care, but we do not have a system of long-term care. If we had a system of long-term care, things would be a lot more organized, but we should not disparage this segment of long-term care just because of the challenges that exist.
Eric: Sheryl, can I take a step back? How did you get interested in this as a kind of research focus, policy focus, career focus?
Sheryl: So, I’m a health services researcher. I got a background in [inaudible 00:15:46], a background in public health, background in social work. And when I was getting my PhD, I wanted to find something that spoke to me, and I had been doing clinical work in nursing homes. I wanted to find something that really spoke to me and that I felt like I could really try to have an impact on. And really, not just think about looking at a little piece but understand the large system and the different pieces of the system and how they worked together.
And at that point, which is what? 30-ish, 35 years ago, assisted living as we know it, as a market kind of driven phenomenon was really just starting to get going. We had other types of assisted living. We had domiciliaries, we had small mom-and-pop homes. But all of a sudden way back then, now again maybe 30, 35, almost even 40 years ago, it was a market-driven phenomenon. People saw that there were people who needed to have supportive care, didn’t need to have the level of nursing that was provided in nursing homes, and there was money to be made.
So, you had a market, you had money, and I just found it fascinating. I found all the different moving pieces of it fascinating, and continue to, because we continue to just keep talking about unfortunately some of the same things but some new things, which is kind of this why we now need to be talking much more about medical and mental health care than we used to, because that’s not where the model started 35 and 40 years ago.
Eric: And how did you dream up about doing this Delphi study that you published in JAMA Network Open?
Ken Covinsky: And also what’s Delphi?
Eric: I’ll get to that, Ken. It’s Oracle?
Ken Covinsky: Sounds very Greek, yes.
Sheryl: Especially because people do expanding that term around with, because actually a Delphi is a real thing when it comes to research. But why I decided to look at medical and mental health care and assisted living. Well, we’ve got geriatricians here. I mean we know medical care has been really important to people who live in assisted living communities. We’ve been saying people live in assisted living communities today look like people who are in nursing homes 10 years ago. The acuity level has gone up, right? I mean, people who used to be in hospitals are now with quicker DRGs. They’re going into nursing homes, and we’re just kind of playing and putting those needs further down the level of care. Maybe even level of care isn’t the right terminology.
So, we’ve been seeing that there’s this increasing need for attending to the medical and mental health wellbeing of people in assisted living more so than before, because it’s not really just a social model of care. With rich, white people who want to have their medications given to them. Sure, those people are still there but it is more than that. And there’s a whole lot of reasons that it’s more than that.
So, that’s why we did this project, the Delphi panel, to say what really should be recommended for medical and mental health care in assisted living? And Delphi panels, it’s a group of experts with a very specific methodology and people who are purposefully selected, often, I mean, to develop consensus recommendations. It’s what happens in lots of different fields, including geriatrics. Many different medical care recommendations have been derived through Delphi panels.
Eric: So, you get all of these experts together in the Delphi panel. I can imagine what recommendations they’re going to come up with depends on which experts who bring to the table. Is that right?
Sheryl: That would be right. And that gets to where there’s actually some rigor behind a Delphi. This particular Delphi panel in this paper that was published in JAMA Network Open, we had 19 different panelists, and they represented geriatrics. They represented nursing, they represent an industry, they represent an advocacy, they represent consumers. Of course, we had researchers there and probably seven, eight other different constituency groups I didn’t name. So, there’s that.
The other thing that’s really important about a Delphi is you don’t want the loudest voice in the room to be the one who’s helping to say, “This is what really matters. Everybody listen to me. I’m really wanting you to understand my expertise and make sure that there’s some sway.” Everything that’s done in a Delphi panel is done anonymously. And also with research oversight and expertise so that we’re making sure that when we’re asking questions, if we get back data, so the Delphi panel, basically we had 183 different items that we derived from numerous different sources about things that could potentially be important for medical and mental health care and assisted living.
And we had the panelists rate these different 183 items, each item one at a time, to basically say how important they thought it was to quality and to outcomes in assisted living, and how feasible it was. And here’s where the researcher comes in, is that if we saw as we did that after round one, between round ones, two and three, because there’s usually more than one round and usually not more than three, we were getting very little endorsement of the importance of advanced care planning, the way we had asked the question. And that made no sense as researchers and people who also knew the field. We’ve got a lot of clinician researchers, myself included. And why is it that people wouldn’t be endorsing on any level the importance of advanced care planning?
And we realized it was because the question was just worded the wrong way, and people were understanding it differently. So, that’s where, as part of the group you also bring in the researchers, and then why you also have more than one round. And you have objective people. Those of you who can’t see, I’m making air quotes. Objective people looking at the data and saying, “Hey, this doesn’t fully make sense. Let’s reword it and ask again and see if we get different results.” And indeed we did.
Eric: And kind of big picture, what were the big findings?
Sheryl: The big findings were you get 19 people representing different constituency groups. You ask them 183 different questions about what might be important. You use established cut points, which basically mean on a rating of one to nine of importance, they had to rate it seven, eight, or nine. And also we had questions about feasibility, and also another standard cut point is at least 75% of the people. So, if at least 75% of the people rate something seven and above, that basically, that’s where you have consensus.
The biggest finding that I think surprised all of us was that there was consensus. More than 75% of people rated 43 items seven, eight or nine. That was a big deal. That’s a lot of consensus. That’s a lot of people representing different areas saying… We can all pretty much nod our heads and say this is a slam dunk.
Eric: Can you give me examples of maybe a couple of those things that rose to the top, at the tippity-top of these 40-something items?
Sheryl: I sure will. We grouped them in five different areas. And I will give you one of the areas. Some of these, this will sound, it’s like, well, yeah of course they should do that. One of our categories was resident assessment and care planning. And 10 of the recommendations fell within this area. So, the top two were that assisted living communities, in those communities the resident should be present during assessment and care planning. The second highest rated one of 10 of 43 that were in this category was that communities should conduct formal cognitive assessment as part of resident assessment. Seems pretty straightforward.
Eric: Do they currently do that?
Sheryl: Not all of them, no. Until now, no one was saying, “Hey, think about these things. You can do them if you’re not already.”
Let me give you one more example, and then I want to say one more thing about that reality part of it. Another one had to do with the category of medical and mental healthcare providers and care. Three of the recommendations were within that area, and the one that rose to the top-top was that the recommendation is that all offsite medical and mental health care visits should include a post-visit note with findings, so that if a resident’s leaving the community to get medical and mental health care when that person comes back, the people who work in the assisted living community are going to know what came out of that.
So, when you said are places, are they actually doing these things? Well, again, no they’re not. We had data. We’ve been doing research in this field, as I said, for over three decades. A recent seven-states study that we’re doing, a current study we’re doing, we did have data about 26 of the 43 recommendations. And for 26 to 40 recommendations, three-quarters of those were being done in about three-quarters of the communities. So, are all of them doing it? No. But can all of them do it? Probably. I’d say all except maybe two of the recommendations when we looked at them kind of critically, they probably could do them, maybe between two and four of them. Now they know what they should be doing. Though again, air quotes.
Eric: Kenny, when you saw the results of this Delphi process, what went through your head?
Kenny Lam: I mean, I can go back to sort of a story. It’s so helpful to hear Sheryl’s vantage point as someone who’s studied this area for longer than I’ve been alive, maybe. And I wanted to, what it made me think about was these rounds that I used to do with a geriatric psychiatrist back in Toronto. Her name’s Carole Cohen. And she had started this practice following her mental health patients as they got older, and invariably over decades of her practice, her practice became an assisted living practice, because all of her patients ended up moving into assisted facilities.
And I would round with her in these places. And I guess the recommendations reminded me of those rounds. We went around, and I remember we met with some of the nurses or LVNs or LPNs who were staffing the floors in these places, and they were totally overwhelmed caring for 15, 20 persons with dementia. And we were asking them, “Do you have any experience dealing with this?”
And they’re like, “No, I went into this job to care for older persons, and I don’t know the first thing about dementia. I barely know what it is.” And the requests from management were to ask her to prescribe antipsychotics to try and sedate some of these behaviors away. And that’s really what it reminded me of, because I was like, “I didn’t see assisted living at that phase of its evolution.” I only saw assisted living for what it had become. And hearing my mentor’s vantage point, it was so helpful to hear that’s not how it always was. This is what it has become as our population is aged, and there hasn’t been enough long-term care available for other people. And everybody is just poorly equipped to deal with this problem, because no one expected it at this scale or this scope or the challenge of some of these cases.
And that’s where I worry a lot that we’ve misunderstood the nature of the problem. It’s a deep and complex problem, and it still gets branded as a nice facility with just old-style furniture and meal service. I think that’s the thing that I realized happened from this Delphi panel. That’s what people think they want, but if you talk to the experts, that’s not what people need.
Eric: Does assisted living facility, is it the same thing in Canada as it is in the US?
Kenny Lam: Oh, yeah, sorry. I’m not sure if I’ve mentioned this, but I’ve done all my training in Canada. So, all this was done in Toronto. And it’s interesting there because long-term care is covered by the government, but still assisted living has emerged as a private market to try and accommodate some of this demand for supportive services. And it’s very hard to even estimate what that demand is, how much is needed, how valuable is it? How valuable is it for people’s health? This is all frontier questions, I think, in the domain of geriatrics, because we all, I think in the room as geriatricians, we’re all aware that there are a lot of these needs as people get older, the inability to care for oneself is obviously something everybody is worried about.
But how you structure that and how you organize that, that’s why I share your sentiment, Sheryl, that assisted living, it’s a very interesting frontier with a lot of different solutions. And I don’t know which one works well, and it’s really hard to even establish the science to figure out what works well. It’s very confusing. Yeah.
Eric: How about you, Ken? What are your thoughts when you saw this?
Ken Covinsky: Yeah, so first I admired the Herculean task you did, Sheryl. So, thank you, because you know did something. I think you put together something that’s important, and started the process of thinking about something, bringing order to a care model that really needs some standards.
But I had another reaction too. So I think on the one hand, the recommendations made sense, and they would improve care, but I wondered a little bit about do we have some lower hanging fruit to come at first? So, the basic standards of humane treatments, so that I… I fully agree with you that there are many good people in this industry, but the people who are users of this industry are also really subject to a number of bad actors.
And here’s an example of this. So, recently in the Bay area there was this widely publicized episode where at one particular chain, two assisted living communities, there were four residents across these two communities where persons with dementia ingested cleaning fluid. Three deaths.
Eric: Two separate communities?
Ken Covinsky: Two separate communities. And you look at this, and it’s just hard not to get emotional and angry even thinking about this. It smells of inadequate staffing, and it smells of almost negligent, inadequate staffing. So, how do we establish standards so that you even get the basic care you need for your cognitive or physical functional issues? Just basic things that if you’re entering an assisted living, because you need help getting to the bathroom, when you need to go to the bathroom, is there any standard out there that you don’t have to sit and wait for a half hour while you’re waiting to go? If you fall that somebody’s going to attend to you right away?
So, I’m wondering, how do we… I feel that what this Delphi panel did was the step after the basic standards are met. And I worry that we haven’t even met these basic standards.
Sheryl: Well, your point is well taken. I think some of these can be considered basic standards. I’m thinking about some of the staff training recommendations, about training staff on infection prevention and control. Right? I mean, that was one. That feels like that’s probably basic. Training staff on side effects of medications. Those are basic, but you are absolutely right. And that’s the complication here is there’s so many things that the staff can be trained on. We don’t have a sufficient workforce, because we’ve got the same challenges here as we have in nursing homes. And there’s the same kind of turnover and the training problems.
And my concern is that we just start saying, “Well, you have to do this, and you have to do that,” without being realistic about the fact, if you don’t have the warm bodies doing it, what good is it to just say, “This is what we should be doing?” And there’s just so many priorities. So yeah, priorities, we have to prioritize things, but I don’t think the medical and mental healthcare components are really at the bottom of the list. Some of them certainly may be lower down than others, but… They’re important.
Alex: Can I just comment that… ,I just want to read off some of these because some of them are more in the geriatrics domain, some of them more in the palliative care domain, and many of them, most of them perhaps cut across both. So, more in the geriatric side. Provision of routine toenail care on site. That is just an incredibly practical, important thing for older adults, right?
Here’s some that are more on the palliative care side. Staff training on person-centered care. Training for any staff on end of life care, advanced care planning. Right?
And then there are some that sort of get at what you were just talking about here, direct care worker to resident ratio, which is something that we’ve talked about previously on this podcast. I just am interested in our guests’ thoughts about these different areas. And particularly, I noticed, Sheryl, you didn’t mention a specific direct care worker to resident ratio. It was that there should be a consistent or minimum direct care to work resident to worker ratio. Is that right?
Sheryl: Yes. And this was the group we specifically, round two of the Delphi, where they for example, there was three items that I think really speak to numbers, metrics, if you will. The ratios of direct care workers to residents, whether the percent who should not be contract staff, right? Who actually work and are paid by the community itself. And the percent of full-time folks.
The Delphi-ists, panelists, they said, “Yeah, all those things are important, we’re going to rate them all as important, but we can’t.” It’s premature to put an actual number around those for a couple of reasons. One is that the assisted living communities are very variable. The acuity level of the residents is very variable. Some take care of people who’ve got more healthcare needs, more mental illness, more dementia. Others take care of people less so, a more hospitality model, if you will. Although truly, communities really want to get away from those types of names.
And the same thing with even thinking about ratios. There’s the acuity and then the fact that if we don’t have those workers, we don’t really know what the magic number is, given the ratio. So I think the state of Oregon is doing a study on that. But it is definitely premature to say that this community should have this many people, because it depends on who those people are, who the residents are.
Alex: Okay. And then I want to get our guests’ reflections on this advanced care planning in assisted living communities. We’ve talked about this previously on this podcast, Sean Morrison, Bob Arnold, Diane Meier wrote a paper in JAMA saying that we should stop focusing on advanced care planning and advanced directives in particular. And here we have an expert recommendation that these should be a routine part of assisted living communities. Any thoughts from our guests about this issue? This is your opportunity to opine.
Ken Covinsky: Well, Alex, I think assisted living is the chance to bring these two camps with different views together, because whether you call it advanced care planning or just goals of care, this is a situation where I think all would agree that understanding what… Now we’re in a situation, we’re really understanding what residents want and need in real time becomes crucial.
So that whether it’s a pulse form or whether it’s knowing what’s important to your residents and what makes your residents tick of, do hospitals scare you? If something happens, do you prefer everything done to be stay here? Or do you want to go to the hospital if something happens? A lot of assisted livings, it’s acted like it’s not even a choice, that it’s usually the default is you go to the emergency room. So, can we at least, so this is an area where just… I don’t think we have to even get into that debate, that I think this is where I think both camps can agree. Just really knowing your residents and responding and trying to understand what’s important to them is important.
Now, that’s sort of another area though where it’s one thing to say we should involve residents in care decisions. For those of you who do family meetings, doesn’t that take a lot of time?
Eric: Well, that’s my biggest concern is that it would just turn into, “Here’s an advanced directive, let us know when you’re done filling it out.” Sheryl, what do you think?
Sheryl: Well, and here, because that was one example I gave in the beginning of the podcast, that the group felt, the Delphi panelists, and I’m guessing that you all would agree, I know I agree. That people don’t have to necessarily fill out their advanced directives. They may not be ready to do it, for whatever reason. But all that was recommended was that they at least had discussions about that and to document the fact that a discussion was had. I see no harm in that. It’s not dictating that that discussion needs to be with the daughter, the husband, the legally authorized representative, just that at least someone’s paying attention to it. And that’s where I really think these really are very pragmatic, feasible, fair recommendations.
Eric: Okay, I’ve got another question. We’re getting close to the hour. This paper reached Delphi and Greece, and woke up the Oracle. And the Oracle talks with some other Greek gods, and they’re granting everybody one wish in this room on how to improve assisted living facilities. I’m going to turn each one of you. You’ve got one wish from the Greek gods.
Alex: Not 43?
Eric: Not 43. You can pick one of those 43 things. I’m going to put Kenny on the hot seat, so Sher also has some time to think about it. Sorry, Kenny.
Kenny Lam: Yeah.
Eric: Kenny, what’s your wish?
Kenny Lam: I think here, I’d advocate for, there’s this qualitative paper which had this great quote from an older person who stated, “There’s just no class for when you get old.” All of a sudden you get old, and then all of a sudden you need to learn all these things about parts of society that you’ve never had to know anything about before.
And if I were to ask the Greek gods for one thing, I just wish there was better instruction or education for people to know what it is that they’re getting into. I wish we did a better job. That’s the advanced care planning that I think we really need to work on. It’s not just about CPR or intubation, but there’s a whole host of gray that’s actually really complicated, and many people haven’t done before.
I know that there have been some groups that have advocated for these non-partial navigation hubs to help people as they encounter more disability, as they get older, to instruct them on what is available, what the options are. That might be one form of it, but broadly speaking, I just wish as a public, we didn’t hide aging, we had a better understanding of what it looks like and what options were available for people as it happens.
Eric: That reminds me of a podcast we did a while ago with Lee Lindquist, thinking about what the last 10 yards of life, what was her website called again? It was-
Kenny Lam: Plan Your Lifespan?
Eric: Plan Your Lifespan. And we talk about advanced care planning, but really broadening that too is why are we just so focused on, let’s say CPR and intubation? When we think about advanced care planning, it’s really about all of these things, where people want to live, what’s important to them, how do they want to live? Okay, Ken Covinsky?
Ken Covinsky: Oh, boy. I was hoping I’d go last. So, there is a lot on my list, and I think for me, the fundamental thing I would like to see moved to is moving the power structure more so that the residents have more, at least as much power as the owners of the facilities. So, what would that include? That would include a resident bill of rights that would include some sort of process where residents have a third party. And I know we ombudsmen, but there’s no power there and there’s not a regulatory framework to make that work. So basically, starting a process that enhances resident rights in assisted living.
Eric: Alex, do you have one?
Alex: Oh, I’m a host. [laughter]
Eric: All right.
Alex: But I’ll go. I’ll go. All right. Maybe it’s the middle child in me, but I’m going to say that this is a place where advanced care planning makes sense, and that one of Sean Morrison et al’s comments, arguments against advanced care planning, was against people who are planning this way in advance, death over dinner, trying to decide what the last moments of their life would be like.
Eric: As a 25-year-old healthy person.
Alex: Right. Right, right. And they certainly agree that when you’re seriously ill, you should talk about this. And you talk to people who are proponents of advanced care planning, they say, “Absolutely. We should talk about these things.” And that extends to periods in which you’re borderline seriously ill. And this would be one of those places, right? Assisted living facilities clearly are a place where people are nearing the end of their life. They’re in the last quarter of the game or less than that, most likely. And that it’s appropriate to have these conversations, no matter what you call them. Whether you call it advanced care planning, whether you call it serious illness conversation, this is a setting where those sort of conversations should occur.
Ken Covinsky: So it’s like what Lee Lindquist called the last quarter.
Ken Covinsky: Yeah.
Alex: Hers probably extends even prior to that because a lot of what she’s thinking about, where would you like to live? Rather than having moved there already.
Ken Covinsky: Oh, and you’re not getting out of this, Eric.
Eric: Oh, I am talking to the Oracle [laughter]. So, I’ve got to tell the Oracle everything. Sheryl. All right, you get the last one Sheryl, because we’ve got three minutes left.
Sheryl: Yeah, well, I’m a middle child as well, but I’ll tell you. I’m really grateful to have been here, to have been invited and be part of this conversation because this is something that we’ve not been talking about. And I think problem with research is that, great, we publish research, and nothing happens with it. What I’d like to see come out of it, and we’re going to be taking action, doing a webinar, and then trying… Not trying. We will be convening a series of round tables of different groups, including consumers and consumer advocates and providers and owners and operators and clinicians, so people can have the conversations that we just had and say, “Okay, maybe we’re not going to do all these things, but you know what? Out of these 43, let’s be doing this.” Or, “Why aren’t we doing this? And family members should know that this needs to go on.”
So, I think it’s the idea about education. No, clearly things have to change, and change in a reasonable way. So, I would just like to see that we now have a rule book, a code book, and something that we can use to build toolkits. I mean, Kenny was kind of commenting on if people had a better game plan to understand what to do. I think this gives us a nice, coherent way to really work together towards making change, so I see us putting together a coalition of people with different round tables representing all different groups, and having a discussion, making change just similar to what was recommended here.
Eric: Well, that was wonderful. I want to thank all of you for joining us, but before we end, Alex?
Alex: How to a Save a Life, 2005.
Eric: 2005? Get out of here.
Alex: Yeah, 2005.
Ken Covinsky: That just, and maybe one of the things we learned today, saving a life is not just the traditional saving a life. It’s making a life better. Right? Yeah?
Alex: Yeah, it’s a different way of saving a life. Yeah.
(singing) “Let him know what you know best, because after all you do know best, try to slip past his defense without granting innocence. Lay down a list of what is wrong, the things you’ve told him all along. Pray to God he hears you, and I’ll pray to God he hears you. And where did I go wrong, I lost a friend, somewhere along in the bitterness, and I would have stayed up with you all night had I known to save a life.”
Eric: Thank you, Alex. Thank you, Ken, Sheryl, and Kenny for joining us on this podcast.
Ken Covinsky: Thank you. Thank you for having us.
Sheryl: Thank you.
Kenny Lam: Thank You.
Kenny Lam: Thank you, Alex.
Eric: And thank you to all of our listeners for your continued support of this podcast.