Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, who do we have with us today?
Alex: Today we are delighted to welcome Ann Henshaw who brought this podcast idea to us. Dear listeners, if you have a podcast idea, feel free to reach out to us. Ann Henshaw is an occupational therapist who works clinically at Georgetown and teaches at GW. Ann, welcome to the GeriPal podcast.
Ann: Thank you. Very excited to be here.
Alex: And Tamra Keeney is a physical therapist and research scientist and Director in the Division of Palliative Care at Massachusetts General Hospital and Harvard Medical School, and is also a former JAGS Junior Reviewer. Tamra, welcome to the GeriPal podcast.
Tamra: Thanks for having me here.
Alex: And Sarguni Singh, who’s a hospitalist researcher, Assistant Professor of medicine in the division of Hospital Medicine at the University of Colorado. Sarguni, welcome to GeriPal.
Sarguni: Thank you. Excited to be here.
Alex: And as a guest host today, Lynn Flint, who’s been on many times. She’s a palliative care doctor and director of our GeriPal Fellowship. Lynn, welcome back.
Lynn: Thank you for the invitation.
Eric: So we’re going to be talking about palliative rehabilitation or really the intersection between palliative care and rehabilitation. But before we go into that subject, Ann I think you have a song request for Alex.
Ann: I definitely do. Sweet Caroline.
Eric: And why did you choose Sweet Caroline?
Ann: Well, I think teamwork is key in this space and I am a big baseball fan, big Red Sox fan, which is not a good thing to be right now, but I really think it’s indicative of how we should all be working together on this team to help our seriously ill patients.
Eric: And probably, you didn’t have to twist Alex’s arm for a Neil Diamond song.
Ann: No, he was very excited.
Alex: We have done this one before, but we’re going to do it again. And this time everybody’s joining in. Here we go. (singing)
Ann: Great job.
Eric: Not sure about the Zoom effect.
Ann: Love it. I’m in the mood for ball games.
Alex: It was perfect in every way. Perfectly synced [laugher]. Yes, thank you.
Lynn: We all have our red Dixie cups down here.
Ann: I’m at Fenway.
Eric: I was telling Alex today when he said that we were going to sing, Neil Diamond is the one song, group of songs I can sing, but I usually have to have several beers in me.
Alex: That’s right.
Lynn: We did not have any beers today at work. [laughter]
Eric: So Anne, thank you for requesting this podcast. I’m wondering, I think we’re now close to 300 podcasts. Why did you push for this podcast, Ann?
Ann: I guess I’ve been a clinician for almost 40 years, believe it or not. But really I think that the impetus for this is personal. I lost my brother at age 46 and within a five-year period had a bunch of other loss, both my parents and a child of a friend of mine. And each time I went through the process of, the honor really of helping somebody decline with as much dignity as we could muster, which as you all know is not easy. There was no therapists at all. There were really very few therapeutic interventions by OT, PT, and Speech at any point. And I had to dig deep into my OT toolkit to help each of these people in different ways. And OT is very varied as a profession. I’d be happy to share those things we can do, but I really wondered where they were.
So when I went back to work and I went back to get my doctoral degree later in life, just recently graduated, and I went around looking for the palliative care team at Georgetown. And let me tell you, I met some of the best people in the world. They’re incredible. They’re my friends, they’re incredible people, but I didn’t know they exist. They were working in this incredible interdisciplinary team, which I now know and love, but I didn’t before. And we over on the rehab side. We’re working together with the PM&R doc and maybe the hospitalist and maybe our OT PT and Speech, but we were working in parallel universes. We really honestly were occasionally connecting, but more in notes. “Yeah, I’ve read your note.” Well, that’s not the same, right?
So anyway, that was really why when I went back to get my doctorate and looked at what I wanted to work on was less about what OT can do or what rehab can do or what the value is. And I could talk to that because I think it’s very important, but more the intersection, using IPEC core competencies to try to bring us together. We’re both in my mind, and I’m biased, great team players, the palliative care team, the chaplain is a great, everybody’s super. We’re super over here, but we are just not connecting. So that’s probably longer story than you wanted, but that’s the impetus of why I started this whole little journey for me.
Eric: I want to just thank you for suggesting this, because we got a lot to go through and go over, including potential benefits. Love to hear more about even before you started integrating with the palliative care team, what were some of the barriers to do that. But before we do that, Tamra, I wanted to get your experience too. How did you get interested in this intersection between palliative care and rehab?
Tamra: Yeah, I’m an accidental palliative rehab person, really. So I’ve been a PT for about 12 years, which is hard to believe. And I started my career at Barnes-Jewish Hospital in St. Louis where I was embedded within the advanced heart failure service. So I’ve always worked in coronary care units and cardiac step-downs. And at Barnes I worked across a number of floors. So it gave me the privilege and opportunity to take care of patients from the point of their first hospitalization for heart failure throughout readmissions, LVAD implantations and subsequent transplant or bridge therapy. And so I found myself really struggling with figuring out what the role of rehab was at different points in the continuum, and feeling very frustrated by a lack of language or skills to help deal with it.
I moved to Boston in 2015 to start my PhD and I’ve always worked clinically at MGH during the process, but I was very interested in this notion of measuring function and frailty. And so I did all of my research training in health services research, health policy, and then was very grateful to be recruited by Dr. Christine Ritchie when she transitioned here to MGH in September of 2020. And so I knew that I wanted to do something related to palliative care because I work with people with advanced and serious illness. But it was having the opportunity to really be embedded in the division and be thrown into a group of really amazing interprofessional colleagues to help me hone my thinking, have introduction to what palliative care actually is, and to think a little bit more deeply about how that actually can be integrated into rehabilitation has been something of a journey that has evolved over time. But that’s how I have landed here today.
Eric: And Sarguni for you coming in as a hospitalist, as a researcher, probably a lot of hospitalists have never actually walked into a skilled nursing facility before. Having read at least some of your research articles there’s a lot of focus around this intersection between what happens to people after the hospital stay post-acute, especially in the cancer patients. I’m wondering how did you get interested in that subject?
Sarguni: Yeah, definitely. I work as a hospitalist at the University of Colorado, and I primarily work on two services, our ACE service, which is acute care of the elder, so 72 and older patients with multiple comorbidities, and then our inpatient oncology service. And I think I became interested in SNF outcomes just by seeing the distress that I was seeing in my patients that I would send there. And it was much more noticeable on the cancer service. Just there’s a lot of intense decision making that happens after patients are discharged to skilled nursing facilities.
And then really just sending them there thinking this is not the right place for them. Understanding the decision-making and discussions that happen in the hospital that get them into the SNF in the first place and then seeing them a few days later come back with a lot of worsened symptoms, a lot of distress for the patient and their family. And being part of this cycle of being rehabbed to death from the hospital side, I think is really morally distressing.
And so that’s how my interests kind of came about, especially with the cancer focus, just because I was seeing such a different experience in patients and their families on that service compared to ACE. And so I became more interested in what are the outcomes of patients with cancer when they do go to a nursing facility? Why do we not have more palliative care access in nursing homes? And that’s led my research interest to where it is now.
Eric: Well, maybe we could talk about what is the, oh, go ahead.
Ann: Well, Sarguni, it’s interesting you say that because one of the patients that really spurred my interest even more was a failed SAR. And we talk a lot about these failed SAR patients, which I just hate that whole terminology.
Eric: What is a failed SAR?
Ann: They fail at SAR. They’re already dying of cancer.
Alex: What kind of rehab is SAR?
Ann: Here, SNF maybe failed SNF for you. I don’t know what you…
Lynn: Subacute rehab.
Ann: Subacute rehab. I think it’s state-based, right?
Ann: But the palliative care team and the rehab team got together and we talked about this problem and it was all this one patient who had colon cancer with mets to the spine, very anxious in a lot of pain. You folks understand. And we were called in rehab. PT and OT went in on a Friday afternoon and neurosurgeon saying, “We got to get them out. We got to get them out.” You all know this scene, right?
Lynn: Oh yes.
Ann: He couldn’t stand. He was too anxious in too much pain. He did have a partner who was willing to help, but I can’t train that partner and get all the equipment and do everything on Friday. That’s going to take some more time. Neurosurg wants him out the door. So he goes to SAR, and guess what? I come back Monday and there he is again. And as you said, Sarguni the moral distress, the dehumanization of this poor man. He happened to be a music professor and it was horrible. And that’s really one of the cases that we talk a lot about when we’re talking about how we can do better for these patients. And maybe that means an extra day. Don’t tell my administrators.
Sarguni: I hear what you’re saying and I struggle. It’s very challenging from a hospitalist standpoint because I think there’s definitely a population of people who are not educated well about what are the outcomes when people go to subacute rehab, who benefits from that. Largely the messaging I would say is you’re going to a nursing facility to get better and stronger and then you’ll go home. So we’re setting a false expectation there. And then for the people who you do have the time and discussions with about, “I’m worried that going to a nursing facility is not going to help you have the outcome that you want.”
From a cancer perspective, oftentimes what is pitched to them is, “Let’s see how you do in SAR. You’ll follow up with your oncologist in a month, and then we’ll decide if treatment is an option, what treatment it is.” And I think that is also challenging because all of the claims data, larger data sets that studies that we do suggest that most people do not go on and get more treatment. They have high mortality, high readmission rates. But then when you’re talking to the patient in their bed, you’re thinking about, well, what about hospital ability? And then the patient themselves is saying, “I’m going to SNF. I’m getting stronger. My goal, my values are more treatment.” And so some of it is acknowledging this is what patients are also advocating for. And so how do we honor that? As we think about palliative rehab and
Eric: Sarguni, some of your research is you have these patients, many of them don’t receive future cancer treatments, these cancer patients that are going to SNFs. Many of them aren’t enrolled in hospice before they die. And a lot of them never actually improve their ADLs once they’re sent to SNF. So this idea of let’s send you to SNF, see if your function improves, your nutrition improves, and then we can consider chemotherapy from a population perspective. That doesn’t seem like it happens often. Is that what…
Ann: But we have nothing else to offer. That’s the problem. What are other options? Home with a 75 year old mom who can’t really move them? It’s a bigger picture.
Sarguni: And I think the inadequacies of the Medicare hospice benefit really come into play here because a lot of times people are not sure if they want to get more cancer treatments. Sometimes they find benefit from the blood transfusion they get once a month or the fluids they get in clinic. And so I think a lot of it is we have no place else to send them, and so we just keep sending them because they’re not ready for hospice.
Lynn: And I think mean when you think about the payers too, there’s this huge key piece, which is that if they go to SNF for rehab, that’s paid for.
Lynn: If they need to go somewhere and receive ADL support and supportive care at the same time, there’s no mechanism to pay for that.
Ann: Even though that would be cheaper.
Lynn: Even though that would be cheaper. Right.
Lynn: Exactly, yes.
Eric: Well, Tamra, I was reading about one of your articles and it was talking about part of the goal of the hospital is sending people out sicker and quicker. I think that was one of your lines, if I remember correctly. You said something that was really interesting. In recent years, pressures to decrease hospital length of stay and increase throughput, the rate at which patients are moved in and out of the system has contributed to a culture in many acute care environments where physical therapy functions primarily as a consultation service for discharge planning.
Tamra: I wrote this…
Eric: Thinking that the perceived role for inpatient physical therapist is a discharge consultant.
Tamra: So that was written, I must confess, and in very angsty white-hot rage during the pandemic.
Eric: I felt that reading the article. We’ll have a link to that article on our show notes.
Alex: It’s good stuff.
Tamra: So at that point, I was a postdoc at Brown, and I always worked per diem one day a week at MGH, and I just took the commuter rail to Brown for my postdoc. And so I worked full-time on the weekends. And because I’m a cardiovascular and pulmonary specialist, I worked in all of the COVID units consistently, and I had of colleagues around the nation who were sidelined or not working or relegated. And so a lot of that has always been, and people who know me pretty well are probably listening to this and they’re like, “Oh my God, she’s on this soapbox again.” Undervaluing the contribution of rehab clinicians in health systems is kind of endemic. And part of it is because just like palliative care, we are still a young kind of profession. How do you clearly articulate the value in what you deliver when we can’t even fully document it in our notes so that we can sit at tables and boardrooms and say, “Look, we’re more than just mobility training. We provide critical education. We provide critical conversations with colleagues and families to coordinate transition planning.”
So that’s something that I think a lot about. But I do think that part of the interesting thing that I’ve been thinking a lot more about lately is to Sarguni’s point and Ann’s point, we can have conversations with patients about what they value and perhaps there’s a lot of prognostic uncertainty around functional recovery for any given patient population, whether you have advanced cancer, advanced heart failure with COPD, with CKD on dialysis, et cetera. But one of the things I’m really interested in is people have agency and autonomy, so we can present them with the scenarios of best case, worst case, and they will always choose what’s most important to them. But really how are we talking about that as a team? And how do we kind of stop this kind of throughput in hospitals at discharge rounds or having actual conversations with colleagues about what we’re seeing and what we’re worried about from a functional recovery perspective versus what it looks like in the context of that patient’s medical trajectory.
I think we’ve all been in conversation with colleagues who are well-meaning, and they have 18 patients on their list. They’re a junior resident. They’re just trying to make it through the day after they’ve been overnight on call the night before. And you’re trying to tell them that, “Oh, I’m worrying about Mr. Smith because he’s been hospitalized four times in the last month. And oh, guess what? When he went to SNF last week, he hasn’t walked in two months.” And so I think this problem, in addition to the policy context and lack of payment and community-based supports for people, it’s just really how can we bring better interprofessional collaboration and conversation to this, which I actually think might bring the humanism back into medicine and help a little bit with burnout and that feeling of churn that, I don’t know if you guys feel it, but I feel it when I’m in the hospital on Thursdays.
Sarguni: And I think just to add to that point, sometimes I think it’s hard with all the shift work and the transitions and care teams to realize that your patient is in that cycle where you’re going from the hospital to SNF, maybe home for a few days back to the hospital. It really requires looking in their chart, spending time, understanding what their experience has been last three months or so. And if you are just admitting someone on a swing shift or are just on service for a couple of days, you might not realize that this is the cycle your patient’s been on. And so having those discussions as a team would really maybe help with knowing when that’s happening.
Lynn: Thank you so much. I wanted to also highlight, Tamra, you mentioned a couple of things I wanted to just follow up on. Number one, you started listing all the great things that rehab professionals can bring to teams and how it doesn’t seem like everybody knows what those things are. So I think it’d be really helpful to hear about that. I’m also curious about your ideas around education to improve this communication that you’re speaking about.
Tamra: For sure. And I know Anne has a lot of thoughts on this too, so feel free to supplement or rebut as well. So I think that there are a lot of different ways that OT, PT, Speech Language Pathologists bring to patient care. I’ll speak a little bit to the PT side, but really, and I hate the false dichotomy of people say like PT, OT, which really we are all trained to take care of both upper and lower extremity things. It’s just the lens that we see the patient through. And so for pt, we’re generally focused on assistance with transfers, providing assistive devices to help people maintain independence with ambulation, doing stairs, leaving their homes, getting into the community, but really focusing on symptom management. So pacing strategies for breathlessness in different patient conditions, repositioning and different pain management modalities for pain and different end stage disease.
But I think part of the interesting thing about thinking about education in this field is thinking about what the actual goals of communication are, or education are. So I think about this in a few different buckets, and I alluded to this in conversations before, but I am enamored with this concept of primary versus specialty palliative care skill training for rehab clinicians and thinking in terms of the bio-psychosocial needs that we observe among patients and how we can appropriately address them.
So we actually have a national needs assessment that we just finished conducting, and I just need to analyze the data, but we surveyed PTs, OTs, and Speech Language Pathologists who work in hospitals, home-based care and SNFs. And we had about 215 clinicians that responded. So we had them identify the bio-psychosocial needs that they observe among patients, their confidence in addressing them. And then we took primary palliative care skill domains and asked for whether or not they perceived a training need so that we could try to tailor programming for educational purposes there.
But in terms of communication training, I’ve been fortunate to do a lot of communication training through a couple courses here at Harvard. And I’m embedded within our continuum project, which is our serious illness communication project at MGH as a new member and thinking about how it pertains to rehab. But we’ve tailored the serious illness communication guide to focus on discharge planning and serious illness. And so we recently pilot tested this in a cohort of three PTs, three OTs, three Speech Language Pathologists, and in the first module, we just introduced serious illness. So we used a lot of rehab to death. Alex, we used your Prognostic Uncertainty article that you published, I think in NEJM a while ago to introduce serious illness concepts and help therapists think about the role that they play in serious illness, how to identify some of these patients at the bedside since we don’t really have a good flag or indicator to do so in most of our health systems.
And then the second and third module is focused on communication training. So the second module focused on therapist communication at the bedside with patients, tailoring the sick guide to focus on function and worries and hopes about function and discharge planning in general. And then the third module, we created an interesting new SIC skills map that is useful hopefully for rehab clinicians to then go to interprofessional providers at interdisciplinary team meetings, ask for permission to share what they observed with the patient, and then take a step back and ask the other provider, what do you think about this patient’s medical trajectory? And then give them space to use the hopes and worry statement to talk about what they’re worried about with discharge to SNF and provide space to have a different conversation around what the alternative strategies might look like. So that’s some of the work that we’ve been doing here.
Eric: So very much focused on the physical therapists and occupational therapists. Speech therapist too?
Ann: All three.
Ann: And we’re doing something very similar on a smaller scale. And one of the barriers that we identified at Georgetown was that some of the therapists lack some confidence, or maybe not even confidence, but maybe tools. I think as palliative care physicians and hospitalists too, you have all these tools that you can use when the conversations become challenging. And I’m old, so I have some just I think by virtue of learning and personal experience, but there are so many great things out there, whether it’s VitalTalk or so many other just tools and articles to look at. So we are doing that training now at Georgetown.
Some of the palliative care docs are doing focus groups. We decided to do it at a small group session instead of a didactic one big thing, just so we had room for practice. Additionally, with another PT, we founded an organization called the American Palliative Rehabilitation Alliance, and we are having a guest lecturer next month just to share basically some tools on difficult conversations. It’s not the depth and breadth that you folks can do it at, but just so that we feel more skilled and really can get to the goals of our patients. And then…
Eric: Ann, I got a question for you. So you’ve done a QI project.
Eric: Which you just got published, I think a couple of months ago. We’ll have a link to it or our show notes. But part of that is really working with both the palliative care team and the therapists together to figure out how to integrate them closer.
Eric: So far, we’ve talked a lot about what we’re doing from the rehab standpoint, and I wonder even when you first started working with the palliative care team, what deficiencies in knowledge, you can generalize, so you don’t have to call anybody out, but what do you think palliative care teams are missing about their knowledge about rehab?
Ann: I don’t think they know what we can do, what we can bring. I rounded with them and I attended, I went both on their Zoom rounds. They do rounds every day like this, but I also rounded with them on the floors. Some of the patients that I would see, we have unique lenses. It became very clear how I’m looking at that patient versus how they are. So I would say, well preparatory, for instance, somebody that’s in a lot of pain that doesn’t want to get out of bed, anybody have those patients? We all do, right? Pain limits mobility, so we can do some mindfulness based interventions and occupational therapy. These days, they’re easy to do. There’s apps all over the place to try to do some preparatory work to help that patient maybe mobilize if indeed that’s a goal.
I’m never pushing my agenda. It’s always obviously patient-centered. And the palliative care doc was like, “You can do that?” I’m like, “Yeah, we can do that.” And when I’m going into a room, I’m looking for, are the slippers there? Has this patient been out of bed? They’re really great, the palliative care social worker and chaplain. I mean, our chaplain is fantastic, man. She can work miracles in my mind, and sometimes you need her much more than you need me. But that lens is different because when I did a visual perceptual assessment of a patient, she’s like, “Wow, I had no idea.” She didn’t know. So you miss things. We miss things. So the working together piece is necessary. If you’re talking to a patient that’s in bed, you got pain down, you’ve got existential distress down. Sometimes functional mobility, if the patient says, “Oh yeah, I’ve been getting up,” you might want to ask again, it is not always accurate. It’s not always right on. It takes…
Eric: Well, I feel like in palliative care training, there’s a lot of focus on function, but on a very crude standpoint, even if you look at the scales that they use, it’s usually not in-depth ADLs like ECOG or Karnofsky, which really are not that helpful from a functional standpoint.
Alex: Palliative performance scale I’d throw in there as well.
Ann: Can they work the TV in their room and find the show they want? You know what I mean? There’s some OTs all about the minutiae, and we’ll talk to them about if we’re trying to get them home, which is always the goal if possible, how far is the bathroom? Where’s the bedroom set up? Let’s really get granular on is this really look like something that would be safe? And sometimes safety be damned as you know, but for the most part, trying to make a really calculated decision about what’s the best course of action. I don’t want to send, to Sarguni’s point. I don’t want to send people to SAR. That’s not the ideal.
Eric: Well, go ahead, Lynn.
Lynn: Well, I was just going to say there’s such an amazing breadth of things that rehab can provide. As a side note, I recently transitioned into outpatient palliative care, and my most satisfying intervention that I have provided for my patients has been getting them scooters, getting them to the OT Mobility Clinic because people can get out. And somehow nobody along the way has thought, it hasn’t been on the agenda along the way. One thing I’m wondering about though is that we have all these wonderful services, and as we educate teams, both hospital medicine teams, primary care teams, palliative care teams about these services, there’s still that push to get people, if we’re talking about inpatient, get people out. It’s really hard to push the pause button and slow things down. So I’m curious if any of you could talk a little bit more about those barriers and any suggestions in that area.
Ann: My palliative care doc is great. She can slow the ship down better than I can. So my first thing is literally there’s a little box at the end of the OT of L would benefit from a palliative care consult, and I check that box a lot.
Lynn: Oh, that’s cool.
Ann: Or I make oftentimes we now go on, one of the things that came out of our QI project that wasn’t expecting is just a teams chat between palliative and rehab. So I will shoot a patient name, patient medical record number, having a little bit of existential crisis, not sure it’s being managed well by ortho or neuro or whoever, not throwing them under the bus. My husband’s an orthopod, but sometimes they’re not as holistic as maybe is needed and try to get them involved. So I’m sorry, that’s not an answer to your question, but it’s what I do.
Lynn: I really think about it also in the realm of the short stay SNF, where once people are not skilled anymore, the coverage is ending really soon. Even though I’ve always firmly believed that complex discharge planning is actually a skilled need.
Lynn: How do we stop that train?
Ann: Yeah, I think that’s a policy issue, more than, I don’t know. Yeah.
Sarguni: Yeah. I think it’s so tricky from the hospitalist side, it’s very challenging because as soon as there’s no acute medical need that you’re treating, then you have these dilemmas of, well, the patient could medically go, but do I keep them another day or two for a PAL care consult? But then if the patient is saying, “I want to go to SNF to get stronger and try to get more treatment,” I know your goals, I know your values. I’m uncertain about what a palliative care consult would do at that juncture.
And so I think that it’s tricky because if we keep them there longer, I don’t know how that would necessarily help them given what their goals are at that time. Sometimes it feels like you just have to wait until they get sick enough to change their mind. And I hear how bad that sounds, but it’s hard because at some point it feels like you’re trying to encourage people to change their mind. And so then I think that feels also not necessarily great.
Eric: And It’s hard, Sarguni because in a perfect world, you can say, “Oh, let’s discharge this patient to the skilled nursing facility, and they’ll have the palliative care team over there see them.” But through a lot of what you’ve done too, there isn’t a lot of hospice care and definitely not palliative care integration into most skilled nursing facilities
Ann: Or communication. Once you discharge them. It’s like the communication is between those two settings, at least for us, can be really poor, if at all.
Sarguni: It’s always really remarkable to me. I always tell the residents and med students I work with that as soon as a patient changes their mind, the way this stops is when the patient says, “I’m done. I want to go to hospice.” And it’s remarkable how quickly it happens. In the morning, we can be talking about let’s do chemo, and then at noon a patient will say, “You know what? I’m done. I want to go to hospice.” And then everything is just flipped and we’re like, let’s enroll them. Let’s get them home later today. It is really dramatic.
So what I try to do when I discharge these patients to SNF who I worry you’re not going to do well. I first try to introduce uncertainty, and I say, I try to get the idea that things might not go the way you’re hoping, and that’s always tricky. You want to try to preserve hope, but also plan for what might realistically be happening, and then try to give patients and their family members the words and the tools to advocate for themselves when they’re floating between SNFs and home health and back to hospitals, seeing different teams. And that’s what my approach has been while I’m working in this system that is not ideal.
Eric: And Tamra, is there a pressure amongst therapists to actually make particular recommendations like skilled nursing facility for rehab?
Tamra: I think the pressures are felt by everyone. So I’m a very different human though, so I can’t comment for all of the therapists out there. But again, to my point about white-hot rage, I always feel kind of empowered to politely collegially speak my mind. And so I don’t feel pressured. I think I myself end up feeling frustrated, to Sarguni’s point and Ann’s point about how broken the system is and recognizing the distress that’s present amongst case managers, nurses, hospitalists, whomever is taking care of the patient. It’s interesting Sarguni talking about the language that you use to talk about this with patients and introducing uncertainty. We have had a couple of patients in the past couple of months where we haven’t necessarily had PAL care consulted, but we talked about not a time limited trial of rehab.
Let’s see how it goes, but it might be the case that in two weeks you look lovely and you’re walking to Duncan down the street and hanging out with your friends. Or maybe I worry that it might not necessarily go as well as we’d hoped, and then you’ll be discharging home and you still might need help. But I think the problem is you have these conversations and then there’s nobody to carry it through. So even in integrated systems where maybe you have an MGB affiliated SNF that we could talk to, there’s nobody to pick up the ball and carry it home across these settings, which I think is also an interesting thing for future studies. How can you actually coordinate that?
Alex: MGB being…
Tamra: Oh, Mass General Brigham.
Ann: And in my mind, Tamra, to that point, if we can’t do that, communicate across settings for our most vulnerable, our most seriously ill patients, then this stinks. Seriously. It just makes me angry. We send them off and then they come back and we’re upset that they have had a horrible time, their pain’s worse, and that they’re just anxious as all heck. Now we need to medicate for that. It really is frustrating. We oftentimes don’t want to send patients to SNF, but I don’t know that I feel pressure. I agree with you, I’ll speak my mind, but we sometimes need that one extra day for training or something, but sometimes in the therapy lab, we don’t know enough about prognosis. So that just comes back to speaking to the whole communication piece. I can read the PAL care notes and sort of read between the lines sometimes, but it’s sometimes hard to dive that deep for every patient. If I’ve got 10 I’ve got to see that day. So it’s a challenge.
Alex: You said the word prognosis. I just want to pick up on that. And we’ve talked quite a bit about uncertainty in prognosis and the need to have a better understanding of the overall patient’s prognosis. Likely we’re talking about mortality there. One thing that it would be incredibly helpful to have is some prognostic tool for function. If they go to rehab, are they likely to get stronger, their goal? Are there any tools? Do we have any data? I know that from Sarguni, we have some population level data, but are there any individual tools that you could use like an e-prognosis for function for hospitalized older adults?
Ann: Yeah, I’ll let Tamra speak if you want. There are definitely assessments we can do, but I’m not sure if there’s any predictive ones. Do you know those?
Tamra: It’s incredibly complicated because to date, there’s not really a validated tool that’s mandated to be used across all settings. So there’s a lot of colleagues of mine who do work in this at Brown. And with the CARE tool being implemented by, I forget the name of the act, the Impact Act, there is a unified measure of function now across SNFs, home Health and IRF or inpatient rehab facilities. But the problem is there is no functional assessment mandated for hospitals to collect and report. And then you have a problem with missing data always based on utilization patterns and trying to identify what that might look like.
I think that there’s a lot of really amazing patient reported outcome measures out there, like the promise physical function, and a couple that are rehab specific that are good at identifying change over a long period of time for heterogeneous populations. But until they’re actually collected in a standardized fashion, it might be difficult to be able to create something like that.
Alex: Yeah, that’s too bad. That’s a major deficit in our system. We need that information. This information is so vital. Hospitals should routinely collect functional information in the same way. SNFs should routinely collect functional information the same way. This is so important to patients, so important to their healthcare, so important to their quality of life. This is a change that needs to happen.
Eric: Well, I was shocked by reading some of your stuff Sarguni, that even ADLs are sometimes poorly captured in the skilled nursing facility and they have to document this stuff.
Sarguni: Yeah. We looked at four different cancer types, and we were doing this measure called the MDS ADL score.
We were looking at changes in activities of daily living for patients with cancer discharge to a SNF. And about half of the people, there were about, I think 4,000, 5,000 claim beneficiaries, and only half of them had ADL scores documented. And so it was challenging to then measure changes if we didn’t really have all of the functional status measures in the dataset. So yeah, I agree. It’s a big problem.
Ann: And as an OT, ADLs are great. If it’s important to patients to complete their own ADLs, then it’s important to me to help them. If there’s family members or friends or hired care or whoever that are willing to do that, and that’s better for the patient, I am good with that too. When I worked in hospice, it was more a matter of really, what do we want to do here? As to your point, it’s freeing when we decide to go that way, because you can go a whole different route and you can start talking about things like, can we take that trip? Can I get to that ballgame, to baseball.
Alex: Life’s so much more than being able to toilet by yourself.
Alex: Or transfer from bed to a chair. That’s not what fills our lives with meaning and purpose. It’s these activities that you’re talking about, these goals, these trips, these events, these meaningful activities.
Eric: Ann, how many hospices actually have an occupational therapist, or for that matter a physical therapist? You said you worked with a hospice agency?
Ann: I worked with hospice patients at a private pay. You know what I mean? Patients that I had known that went on hospice that wanted to continue with me. Now, I will say there are some OTs making inroads in hospice. One actually in Seattle that’s running a hospice in Providence. So I believe hospice patients would benefit incredibly from occupational therapy because we’re very creative around the how, the minutia, as I said before, of how do we make that trip and how do we make that whatever that, or maybe it’s just getting into the living room to play with the granddaughter, whatever it is, those activities that bring meaning and joy. If there’s any left, that’s what I’m all about trying to make that happen. And to make go full circle. That’s what I had to really try to do with my brother as he was dying or other people. And doing that informed this whole process much more than learning anything clinical in a book.
Eric: I also wonder, thinking about solutions going forward, I just looked up the NCP guidelines for palliative care and what constitutes an interprofessional team and includes physicians, nurses, advanced practice providers, social workers, chaplains, and clinical pharmacists. And then there’s, also IDT may also include other folks. So it’s therapists are not part of that, as per the NCP guidelines. I think probably most palliative care teams don’t have an integrated therapist involved.
Eric: You’ve done something differently at Georgetown, that there is…
Ann: We’re trying, and I will say it’s hard. With me acting as the liaison, it’s somewhat clinical champion driven. So if I’m there, then yes, that’s happening.
Alex: And just to say.
Ann: But institutionalizing this.
Eric: Ann, when you say you’re there, you mean you’re there with the palliative care team, rounding with them?
Ann: Right. But if I’m not, I was working while I was in school. Institutionalizing this, what I would call the concept of a rehab a liaison on that team, on the IDT institutional operationalizing that is challenging productivity standards. So it’s really challenging. And that be the goal would be to at least have some level of communication, even if it’s not every day that we’re attending rounds, because I don’t know about your team. We round early and that’s when we’re seeing patients. But even if we could have some consistency with that, but it is challenging. I will say. There’s lots of barriers.
Eric: How about you, Tamra? What are some ways forward from here?
Tamra: I love the work that Ann is doing because I’m really interested in embedded and integrated practice. Here, some of the issue is the way structures are aligned in figuring out billing. How do you create integrated practice units with clinicians that are generally not included in the type of billing that’s produced? And then also too, to be honest, rehab services we bill, but we’re just covered by a percentage of the DRG payment that goes to the hospital. So it’s a little different than how physician and advanced practice provider RBU’s work.
But I actually think just being curious and being willing to try different things. I think that there are a lot of different people in this space outside of both Ann and myself, and people in the UK and the Netherlands, Denmark, Australia, are doing all sorts of cool programs. So I think part of it is partnering with people when you can in the clinical setting, when you have the opportunity to have conversations. And then if you’re feeling activated in this space, sorry, it’s the afternoon. I just get progressively less intelligent as the day goes on. Just take a chance and see what you can do with a small group of people.
Eric: How about you Sarguni?
Sarguni: Yeah, I just wanted to comment about, I think there needs to be a culture change around serious illness communication and who can really engage in it with patients and their families. I think maybe this is unspoken, but at least in the hospital, oftentimes it’s the primary team leading these discussions. And so I don’t know how my hospitalist colleagues would take it if physical therapy came and said, “Hey, we were talking to the patient and family while they were working about hospice and what’s important to them, and this is what they’re thinking.”
I think that would require a culture shift, which is very needed because right now, these patients who are very sick are being cared for by physical therapists, occupational therapists who are largely, it seems like hesitant to talk about prognosis or have these discussions. You don’t have the information, but I think it’s a missed opportunity. And so I think as long while this education is very important, we also have to educate other clinicians that other people can and should be having these discussions.
Yeah, I’m personally very interested in palliative care transition of care models. The work I’m doing utilizes palliative care social workers who are really wonderful at having these discussions while also helping with multiple care transitions. So I think there’s a lot of opportunity to incentivize that in our system too.
Ann: And just an aside, I’m working with CAPC as well on some OT, PT Speech standards. And this is coming up exactly this. Not to encroach on anybody’s territory, but training people so we can all at least have the same messaging and the skills for the same messaging. So it is interesting.
Eric: And Lynn, last question for you. It’s been now several years since your New England Journal rehab death article.
Eric: Have you noticed any difference since then? Or is it still a lot happening?
Lynn: In my overarching broad view of the world that I automatically have? Well, I mean, it’s amazing to be a part of a conversation like this and have people reach out to me and say, “I got interested in this topic,” and this is something that I see happening every single day. So it’s really so cool to see this conversation happening. I think PT, OT, Speech, our rehab professionals have always been wearing a palliative care hat. It’s just people didn’t necessarily call it that. They’re palliative services, especially for frail people with functional limitations who are in nursing homes, it’s a palliative job. So it’s really cool to see language around that.
Eric: Is it really cool or is it so good? So good. So good. [laughter]
Lynn: So good.
Ann: Great job. Nicely done. Alex.
Alex: Thank you.
Ann: Thanks so much.
Lynn: What a segue, Eric. Yeah.
Eric: Did you like that? Ann, Tamra, Sarguni, thank you for joining on this GeriPal podcast.
Ann: Thanks for having us.
Tamra: Yeah, thanks for having us.
Eric: And Ann, a very big thank you, and also for the idea to have this podcast topic. And to all of our listeners, thank you for supporting the GeriPal podcast.