Rehabbed to Death NEJM Perspective: Podcast with Lynn Flint

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

Alex: This is Alex Smith.

Eric: And Alex, I spy someone in our room with us.

Alex: We have a frequent guest, who has been a host in the past and is now a guest host. This is Lynn Flint. She’s associate professor of medicine in the division of geriatrics at UCSF, and a palliative care physician.

Lynn: Hello.

Eric: Welcome, Lynn. It’s good to have you back.

Lynn: Thanks. Thank you.

Eric: And we’re going to be talking about a paper you guys just published in the New England Journal of Medicine. NEJM – I’ve heard of that, it’s like a small, little East Coast journal?

Alex: Small medical society of a small state on the East Coast. I think we made that joke before.

Eric: We did.

Alex: I think we’re recycling old material.

Eric: Dang it! We’re going to be talking about your paper, called ‘Rehabbed To Death’. Did I get that title right?

Alex: Rehabbed To Death.

Lynn: You got it.

Eric: Rehabbed To Death. But before we talk that New England Journal paper, can we get a little song request, Lynn? You know the drill.

Lynn: Yes. So, I’ve been thinking about this ever since I was invited to be a guest on here. And last week on the radio they announced that this week is the 20th anniversary of the release of Hit Me Baby One More Time by Brittney Spears. And I thought, that’s it.

Alex: That’s it. And this marks the first time that we have had a request for Brittney Spears on the GeriPal podcast; and the mark of the decline of the GeriPal podcast as we know it.

Eric: May I just say it was my first year in medical school when Hit Me Baby One More Time came out, and one of my classmates loved the song. So we listened to it everywhere.

Alex: Everywhere.

Eric: Everywhere.

Lynn: So you might be able to sing along.

Alex: We look forward to hearing about your sing-alongs in the car.

Eric: I will add some, not in the beginning verse, but later on in the show.

Alex: There will be a little bit of – what is it? “Still believe”

Eric: Alex, maybe you can just give us a teaser and a little bit more at the end.

Alex: Teaser. Okay. [Singing.]

Eric: You loved that, I could tell.

Lynn: I’m so glad we have the video of this. That was amazing.

Alex: Yeah.

Eric: Britney would be proud.

Alex: Britney. Yeah. There you go.

Lynn: And so many geriatrics topics in those lyrics.

Alex: So, tell us, please, draw it up for us. What are the geriatrics topics?

Lynn: Well, we discussed about loneliness, and there’s something about loneliness and death I think. But also hit me baby one more time just felt like the story that motivated me to write this piece. There are so many patients coming into the hospital, and you’re just like, oh my gosh they got hit again.

Alex: Again.

Eric: Over and over and over again. We had Joan Teno talk about the churn that happens to older adults at the end of life. So let’s jump in. Can you briefly describe the case that motivated this? Was it a case that motivated this?

Lynn: It was more like a whole bunch of cases together. I think for me, my motivation for this piece actually came a long time ago when I first jumped into practice. I was fresh out of a palliative medicine fellowship, and I actually took a job as a primary care physician in a short-stay rehab unit. And it was a shocking experience for a lot of different reasons. But the biggest thing was that I looked all around myself and saw these people cycling in and out of the hospital, and I thought, oh my gosh, this is actually palliative care. This isn’t strictly rehab. And so it just really got me thinking about that from the get-go in that first job. So this has been a lot of years percolating in my mind.

Alex: Right, you worked in a skilled nursing facility for a period of time there, and saw this issue first hand, of people coming in to the skilled nursing facility from the hospital, and then heading out to the hospital again, and then coming back to skilled nursing facility, and then eventually ending up in long-term care as they’re spending down their savings, and they never get back home. Right?

Lynn: Right. And so it felt like I was dangling this carrot in front of people, of home, and in the end, even though I was their doctor during interrupted points in their course, I would end up following people all the way in and out of the hospital, through a decline, and ultimately for many of my patients, through the end of their lives. So to me it felt very, very relevant to palliative care. And I thought, jeez, how can we bring more palliative care concepts in here, into this space?

Eric: And before we get to solutions, I think people have seen this from all different sides, and one of the things I like about what you did in this article, is you talk about these unspoken conversations that people are having. And in the hospital, what are the hospitalists saying as they’re trying to – they have a patient who is older or disabled, came from home, seriously ill, multiple conditions.

Lynn: Well let’s think about, maybe we can start with the case that we talk about here. So, we came up with kind of a hypothetical case – an 87 year old woman who has a little bit of dementia, living at home with some help, and then ends up in the hospital with pneumonia. So, fairly straight forward issue, but she becomes deconditioned, has to go out to rehab. She’s told, you’re going to rehab to get stronger. Then has some different complications including delirium, a fall, a c-diff infection, and that causes her to go back and forth to the hospital until ultimately she ends up in long-term care until she dies.

And in talking to lots of different providers on all different angles, you hear different things. You hear from the hospitalist or the folks taking care of the person in the hospital, I don’t really have anywhere else to send this person, they’re not safe to go home. The SNF doctor is thinking, this person isn’t going to benefit from rehab, they’re not going to get home, let’s face it. And then the patient and the family are thinking, how did I end up in a SNF? I was living at home.

Alex: Yeah. How’d I end up in SNF? And then when they come back again, how did I end up back here again? Again and again.

Lynn: And each time a little bit less independent.

Alex: A little bit less independent. Catherine Aragon who used to be a fellow here in palliative care and was a resident here, back in 2012 published a paper in the JAMA Internal Medicine, Use of the Medicare SNF Benefit in the Last Six Months of Life, and found that a nationally representative sample of older adults who died, about a third of them used the SNF benefit in the last six months of life. So, people are going to SNF, and then a substantial proportion never make it back home, and end up dying in the nursing home. Much higher than those people who were in the hospital and then were discharged home to hospice.

Eric: I think that’s the big challenge is, so, you have this person who is – I don’t want to say unsafe to go home, because we often don’t know fully how things are. And often times they were living at home before okay, well, marginally. But you have this person who you feel like shouldn’t go home, but there is no mechanism to pay for their long-term care. So, really the only option is, can PT say that they are rehab-able so we can send them to a SNF for rehab in the chance that they’ll get strong enough to go back home.

And I think it’s for sometimes – because I’m often in this situation. Do I really know they’re not going to get stronger? Maybe a little bit of PT may help. And especially if it’s aligned with their goals. And especially if they’re not within that six months hospice timeline.

Lynn: Yeah. And it’s also a little bit of, what else are we going to do with this person?

Alex: Yeah, this is where we get to the need for policy changes. I don’t know if you want to talk a little bit about the current policy issues that sort of perpetuate this churn and this cycle of patients in and out near the end of life.

Lynn: Well you talked, Eric, a little bit about the idea of getting PT to say, this person is eligible for SNF. And I think that’s a key piece, that the SNF benefit covered by Medicare Part A is intended for rehabilitation, for improvement of a patient’s condition. So they’re supposed to continually be getting better during that time that they’re in SNF. When really, I think, many times patients are developing these disabilities kind of as part of their expected decline from whatever comorbidities they’re dealing with, and whatever illness they had. So, the purpose of the legislation doesn’t really match what ends up being a significant chunk of the population who’s using the benefit.

Eric: Right. It’s kind of set up for how medicine look like 40 or 50 years ago, where people didn’t have a lot of comorbidities, used it for let’s say a hip fracture or something-

Lynn: Absolutely.

Eric: With the goal of getting stronger and going back home.

Alex: Right. And if a person wants to go to the skilled nursing facility on a hospice benefit, then they have to pay out of pocket, right, for the room and board in the skilled nursing facility, because Medicare will not double pay. They won’t pay for both the SNF benefit and the hospice benefit at the same time. So, patients are often stuck in the middle. Do you want to get stronger to be as independent as possible? Yes. Do you want to focus on quality of life and spending time with your family and staying out of the hospital? Yes. But we have no mechanism to support the multiple older adults who have those dual priorities right now. Our system is broken, it doesn’t fit those needs.

Lynn: Right, right. Especially for people who need hands-on help with their activities of daily living. So, when you talk about that hospice population, there is no Medicare benefit that exists that provides both in-patient, hands-on custodial care and hospice care concurrently.

Eric: Maybe before we go in to ways we can fix the system, what are the other barriers to, or what are the other factors that lead to this Rehab To Death phenomenon?

Lynn: Great question. So, I think the other piece that we talk about in terms of policy change, is this important subset of these patients. And these are the people already living in the nursing home. So they’re paying, many times through Medicaid their day rate to that nursing home. If they go to the hospital and come back, and they’ve “earned” a skilled need, like IV therapy for example, or maybe a brief period of physical therapy to bring them back to their prior level of functioning, they can actually come back on their Medicare benefit, and that nursing home can get a much higher day rate for that person.

Eric: Do you know – and it’s okay of you don’t – but if the nursing home decides to keep them in the nursing home without sending them to the hospital, and start IV antibiotics for let’s say, “urinary tract infection” or “pneumonia,” do they get the same benefit? No? They stay at the same low rate.

Alex: Right, so the incentive-

Eric: So, there’s a financial incentive to send this individual to an ED and then the hospital?

Alex: And the hospital.

Lynn: That’s right.

Alex: So they will come back on the higher rate. And that is a financial stimulus to perpetuate this churn of patients in and out of long-term care facilities, hospitals, and back to the nursing home.

Eric: Well that just seems all types of screwed up.

Alex: Oh, it’s all types of screwed up. I mean, yeah. We get fired up about this.

Lynn: It’s totally screwed up.

Eric: What other factors are all screwed up?

Lynn: I love these technical terms. Well, those were the key policy pieces that we thought about. I think another big piece is this concept that I’m sure you guys are talking about all the time on GeriPal, and I know we’re talking about it all the time in geriatrics, in that there just simply isn’t enough coverage for older adults to have their physical functioning needs, their ADL help needs paid for so that they can remain at home.

Eric: Yeah. So if you have a lot of money you can hire 24 hour caregivers, but if you don’t you have to really spend all of your money to qualify for Medicaid so you can get some in-home support services? Is that right?

Lynn: Yep. That’s exactly right. And so this is speaking mostly to that group of people where you say, I don’t have anywhere else to send this person because I don’t feel comfortable sending them home because they can’t do these things for themselves every day. So Medicare does have a home health benefit, and that may offer some limited assistance with ADLs, but that doesn’t last forever, and it certainly doesn’t cover 24 hours a day.

Alex: Right. And it’s only if they have a skilled need at home, like physical therapy at home, IV therapy at home. Some sort of skilled nursing or therapy need that provides some assistance with activities of daily living for the duration that that person needs that skilled need at home. And it is very limited, it’s not continuous. So, many of the issues, there’s this big mismatch between the daily functioning needs of older adults and the services that are provided by way of the largest providers, Medicare and Medicaid.

Lynn: I think a key thing also is that because both the home health benefit and the inpatient skilled nursing benefit, they’re time-limited, and they’re really based on the person continuing to improve in order to continue receiving that benefit. So, people get to the end of their SNF stay, they’ve reached a plateau with physical therapy, but maybe they’re not back to where they were before, and there’s really, there aren’t a lot of resources for those folks to get that additional help once they go home.

Alex: We should talk about hospice too. Let’s say that this patient who was cycling in and out of the hospital did go home. There is currently no, hospice will provide some limited assistance, well, to what extent will they provide assistance with activities of daily living?

Lynn: The way I usually describe it to patients and families is that it’s about once a week, maybe an hour or two of personal care.

Alex: Yeah.

Eric: So, what I’m hearing is, when this older adult, living marginally before, or an event takes them out of them – for the one that you described in your case this was a case of hospital associated disability. So, got some disability from just being in the hospital, and this spiraled downward from there, being discharged to SNF, coming back to the hospital, being discharged to the SNF, coming back to the hospital until her death. Did you identify any other factors that we should talk about here before we go on to other treatments that we haven’t already discussed?

Lynn: Well those were the main policy factors that we-

Eric: How about non-policy?

Lynn: So non-policy, what can the practitioner who’s out there on the front lines do, the same person who on the hospital side might be saying where the heck am I going to send this person, or the person who’s in the skilled nursing facility saying, this person is declining, how am I going to rehab this person. What I’m arguing for is enhanced communication at these time points, at each of these decision time points when somebody is transitioning from one place to another, to just have a little bit of an increased awareness that this isn’t just a mundane we’re going to send you to rehab to get stronger, if you’re speaking from the hospital side. It’s a big deal for someone who’s been in their home, living with chronic comorbidities, and now they can’t. It’s a huge deal. And it signals for so many people a major change in their everyday life, in their health status, and potentially a transition towards approaching their final months to years.

Eric: So it’s like breaking bad news?

Lynn: Yeah.

Alex: Yeah, this is an opportunity where we as clinicians could, the easy way out is to say we want to send you to rehab to get stronger so you can get home. The harder way is to recognize that this person is likely on an end of life trajectory, and that this disability that they’re experiencing in the hospital is likely related to that trajectory. And to talk to them about, I’m worried that you may never get home, and that all of this stuff that’s going on, part of it is a sign that time may be short for you.

And we should be thinking anout, and if time’s short for you, do you want to really push for getting stronger in a rehab facility? My concern is, you might not ever make it home. And if home is really important to you, and being at home with your family is really important to you, then maybe we should start thinking about other ways to try and get you home now. Or set up some sort of services that are designed to meet those needs, rather than just the easy, mundane, everyday conversation. I hear it all the time – I’m going to send you to rehab to get stronger.

Eric: I’m going to push back a little bit. I’m trying to remember, I think Ken Covinsky, he wrote a great paper on hospital associated disability, is it a third get worse, a third stay the same, and a third get better? Is that right?

Alex: Something like that.

Eric: Does that sound about right?

Alex: Yeah, that sounds about right.

Eric: So do I really know that they’re not going to be in that third that gets better? Is it worth a shot?

Lynn: Right, I think that’s a great question. And I think actually that’s a huge piece of what makes it so hard, this conversation. It comes back to uncertainty. It’s just another one of those really uncertain situations. We don’t know, sometimes, if someone’s going to get better. So I would argue still for having this conversation, and maybe the person is still going to go to rehab, but we’re going to give them some language around speaking up for what’s important in case things don’t go the way that we all hope for them.

Eric: Alex, you wrote a paper I believe in this same small East Coast journal called New England Journal, on uncertainty. Was it, I can’t remember what the conclusion was. Was it avoid any conversation about uncertainty?

Alex: That’s right. [laughing]

Eric: Because it’s hard.

Alex: Because it undermines patient confidence in the physician! You have to appear like you know everything!

Eric: You are God.

Alex: You are God. That’s right. Yeah, we need to acknowledge uncertainty. Like, I’m not sure what’s going to happen here. But it’s so much different than that statement of we need to send you to rehab, we’re going to send you to rehab to get stronger. There is no uncertainty there. It’s, you are going to get stronger, and that’s why we are sending you to rehab, when in reality it’s, one option is to go to rehab in hopes of getting stronger. And maybe that’ll work out and I hope it does. But for somebody like you, I worry that it might not. Right?

That’s the harder conversation to have with folks. And that the incentives are not aligned to have those sorts of conversations with folks currently. And if we could change the incentives it’d be better. And if we had more options for folks both in the skilled nursing facilities in terms of combining hospice and rehabilitation, as well as at home in terms of having more support for daily needs at home, then we would have a much richer palette to choose from when we’re having these discharge conversations with patients.

Eric: Are there any other things that we should be doing either from a policy or local level to fix this screwy-up system?

Lynn: The screwy-up system?

Eric: Yeah.

Alex: Technical term.

Lynn: Well I think, just echoing what Alex said, my biggest hope in terms of the front line clinicians on the hospital side and on the nursing home side, is to acknowledge the uncertainty using that word – we’re going to send you to rehab in the hopes that you’ll get stronger. And even if you’re not getting into a giant, prolonged discussion about goals of care, offering that opportunity, just giving the offer to talk a little bit about what might things look like if this doesn’t go the way we hope. Some people might say, no thank you. But I would argue that it only takes a couple, and maybe it doesn’t take any more time actually, to reframe the conversation from great news you’re going to rehab to get stronger, to we’re thinking about rehab because we hope it might make you get stronger. Or maybe even, here’s where we’re at, you’re not as strong as you were before you came into the hospital. What are you hoping for now in that context?

Alex: Lynn did a great job in this piece. It’s not just the responsibility of the people in the hospital. There are folks in the nursing home who should be having these conversations as people are coming in to the skilled nursing facilities, the SNF-ists, reassessing goals. People are coming back into the hospital for the readmission the second time. Like, huh, that’s a sign, right? When they’re coming back from the nursing home, things aren’t going well, and you’re seeing this spiral happen right in front of you. So there are multiple points along the pathway where you have an opportunity to intercede. Primary care clinicians can get involved in the way that I haven’t seen my patient, so, oh, well here’s what they’ve been doing. They’ve been bouncing back and forth between x hospital and y nursing home.

Lynn: Right. And rather than rehashing the same conversation over and over, really documenting what conversations you have, making sure to be communicating with the next provider. All the basic transitions of care best practices really apply to these sorts of conversations too, so the next person can pick up where the last person left off.

Eric: And we’re still stuck with this system though, that’s in place. Maybe give me three fixes to the system that we should institute. We talked a little bit about that before as far as barriers. But what other fixes?

Lynn: So I think three fixes. One fix would be to continue working towards rebalancing the services that are offered, both by Medicaid and by Medicare. So, there have been some movements to focus long-term supports and services that are covered by Medicaid out of the nursing home and into the community. And I think that’s really important and should continue to be worked on. So that’s a big policy change.

I think someone’s go to tackle this problem of no inpatient options, no inpatient nursing home options anyway, for hospice care, that are covered by Medicare. I’ll restate that. Medicare covers hospice at home, does not cover inpatient custodial care for people who are getting hospice services at the same time.

Eric: So Medicare will cover the hospice service while they’re in a nursing home, but not for the nursing home room and board.

Lynn: That’s exactly right. So the person who does not have Medicaid does not have coverage for the nursing home daily care.

Alex: Unless they’re in the VA.

Lynn: Unless they’re in the VA, which provides a great example. Every veteran is eligible to receive nursing home care if they’re receiving hospice services.

Eric: But we’re still stuck with a little bit of a terrible choice in the VA, because nursing homes get paid more if the patient’s getting rehab in their nursing home than if they’re getting hospice in their nursing home. So you’re still stuck with this choice – what should I do with this patient? Should I send them to rehab with the hope maybe they can get them stronger, versus send them to a nursing home with hospice where they’re not likely going to get rehab. The system is still not really well-functioning to meet people’s goals.

Lynn: Not at all. I think it doesn’t match, you know, one of the main goals of older adults is trying to preserve independence. And for older adults with comorbidities, hospice, actually globally whether it’s happening at home or in a nursing home, doesn’t universally offer services to help people maximize their independence, like PT.

Alex: There was an interesting article, it was written up in the New York Times, about intensification of rehabilitation of services for people in nursing homes in New York state near the end of life. And this is just like rehabbed to death. And there’s a downside to that, like what the heck are we doing, doing all this intensive rehab to people who are dying. On the other hand, for some people it might actually fit within their goals to want to have some sort of physical therapy to preserve and potentially recover whatever function they can toward the end of life. So there are kind of two sides to that story I think is really interesting.

Lynn: Yeah.

Eric: What about other systems, like redesigning the system? I’m just thinking about Program of All-inclusive Care for the Elderly, or PACE programs. Is that a solution?

Lynn: Well it’s been discussed in the literature, we cite one piece that discusses putting together actually a whole new end of life care benefit through Medicare Part A, that would help match people facing a limited prognosis their goals with the treatment they receive. And that would include potentially an inpatient skilled nursing facility service, if that’s what that person needs for their end of life care.

Alex: Yeah, another option is in the community setting, like adult daycare settings, like PACE programs. These are great, creative solutions to help people remain in the community as much as possible while still getting transportation to the services that they need, rather than putting them into a skilled nursing facility where they’re at greater risk of never making it back home.

Eric: Anything else that you guys talked about in your paper that we should talk about? No?

Lynn: I think those were the big points. Did you have any other points, Alex, as the ghost?

Alex: I think those were the main points, yeah.

Lynn: Okay.

Alex: Right, the guest editor/host.

Lynn: I think actually, one last thing that I want to argue, or not argue, sorry, is earlier as we discussed this issue, one of our hospitalist colleagues talked a lot about, I’ll use this word, the burden of asking hospitalists to have this enhanced conversation at the time of discharge. And actually I expect and welcome that response to this commentary. And we do try to address it here, but I want to acknowledge that this is really asking for a change in day-to-day practice, that might take a little more time, and might put providers, clinicians in a situation where they’re flexing certain clinical muscles that they’re less used to flexing, having these more complicated conversations around uncertainty. It’s not always a comfortable place to be with a patient and a family.

So I would argue first of all that it doesn’t just have to be the hospitalist or the nursing home doctor, it could be any number of professionals on the team who can be starting to have these conversations with patients. And there are opportunities now if the physician is the one having these conversations, this totally counts as advance care planning and spending time talking about goals of care can be billed with an advance care planning code.

Eric: Great. And it just reminds me, for many of these folks, they’re in the hospital for two or three days, and the system is perfectly designed to get the results that we’re getting right now.

Alex: Yeah it is. Right.

Lynn: Right, yeah.

Alex: The incentives are aligned for shorter hospital stays, moving people to rehabs rather than these – you know we used to see like 30 days in the hospital.

Eric: Nobody really knows anybody, and we have these cogs in the system, and it’s hard to deliver patient-centered care in the system that we’ve designed.

Lynn: Right. So it goes back to the original quicker and sicker conversation.

Eric: Just hit me baby one more time.

Lynn: Wow. What a good segway.

Eric: Do you like that?

Lynn: I loved that.

Eric: That is about 70 podcasts of learning on how to segway. Well Lynn, and I guess Alex too, thank you for joining us on this GeriPal podcast to talk about your paper. Really I love the title by the way, well done.

Alex: Well done Lynn.

Eric: A perfect title is, people underestimate the impact of a really good title. Speaking of which, Hit Me Baby One More Time, another really good title. Alex, do you want to finish us off with a little Hit Me Baby One More Time?

Alex: Alright. I expect a little back-up singing too. [Singing.]

Alex: Yeah!

Eric: Thank you for everybody who actually pushed through the end of the podcast. We look forward to having you with us next week. Lynn, again, big thank you for joining us. And if you have a moment, please rate us on your favorite podcasting software.

Alex: Thanks folks. Bye.

Lynn: Thank you.