In the US, geriatrics “grew up” as an academic profession with a heavy research base. This was in part due to the tremendous support of the National Institute on Aging. Clinical growth of geriatrics programs has lagged academic research, despite the rapid aging of the population.
Palliative care, in contrast, saw explosive growth in US hospitals. In contrast to geriatrics, the evidence base for palliative care lagged clinical growth, in part because palliative care has no centralized “home” at the National Institutes of Health. The National Palliative Care Research Center (NPCRC)and Palliative Care Research Cooperative (PCRC)were founded in part to meet this need.
Today we interview Kate Courtright, a critical care and palliative care physician-researcher who conducts trials of palliative care. Kate’s journey is in a way emblematic of the lack of centralized funding for palliative care: she’s received funding from three separate NIH institutes, the NPCRC, and been involved in the PCRC.
We talk with Kate about how despite how far we’ve come in palliative care research, we still don’t have answers to some fundamental questions, such as:
- Who should get specialized palliative care? Should eligibility and access be determined by clinician referral? By diagnosis? By prognosis? By need?
- If we move away from clinician referrals as the means by which people get access, how do we keep the clinicians engaged, and not enraged? Can nudges help? (see our prior podcast on Nudges with Jenny Blumenthal-Barby and Scott Halpern)
- When should people get palliative care? What does “early” really mean? We can’t possibly meet the needs of all people with newly diagnosed serious illness
- How do we move from efficacy (works in highly controlled settings) from effectiveness (works in real world settings? What’s the role of implementation science? What is a pragmatic trial?
- What outcomes should we measure?
We cover a lot of ground! Working on a mystery. Going wherever it leads. “Runnin down a dream…”
Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, we actually have somebody in person, but we’re doing this virtually because of COVID.
Eric: Who do we have virtually in person with us?
Alex: We’re all in the same hallway here. But we’re recording from different computers so we can record on mask and have high quality audio for you our listeners. We’re delighted that Kate Courtright is here from the University of Pennsylvania. She’s an Assistant Professor there. She’s trained in pulmonary critical care and palliative care. She’s a palliative care researcher. She’s also a member of the PAIR Center, which stands for Palliative Advanced Illness Research Center. And she’s here as a visiting professor for the day at UCSF. Welcome Kate to the GeriPal podcast.
Kate: Why thank you, Alex and Eric, this is an awesome opportunity. I have had such a great day so far. Capping it off with this.
Eric: We got a ton to talk about with you, Kate, about palliative care research into it. Lots of whos, what, whys that we’ll be talking about. But before we do, do you have a song request for Alex?
Kate: I surely do. So I’m requesting Tom, Petty’s Running Down a Dream. There’s a little reasoning behind that today. So I’m in San Francisco for both this visit and the American Thoracic Society Conference. And it just so happened to overlap with the Beta Breaker’s very famous 12K race that I got to do on Sunday. I dressed as a unicorn. You could see me on Twitter. Ran with a very good friend who I hadn’t seen in years, Carrie Quill. Also the daughter of Tim Quill, well known in palliative care. Carrie and I trained together at Penn. It was wonderful to catch up. We are both runners from childhood. So we reconnected at our roots and it was an experience. I’d never done it before, as I shared with Alex earlier today. I saw all sorts of things and some were good and some were not so good.
Alex: There are some things you can’t unsee.
Kate: There are some things you cannot unsee, as I learned. [laughter]
Alex: Welcome to San Francisco and the Beta Breakers. [laughter]
Kate: Yeah, it was great. It was great. And running’s just a big part of my life, keeps me very balanced. I just started ultra running, which is a very California thing. So I’m excited. So running it in.
Alex: Great. Here’s a little bit of Running Down a Dream by the late great Tom Petty.
Eric: Nice, Alex.
Kate: Thank you.
Alex: Love that song. Thank you.
Eric: So Kate, maybe we can start going a little bit farther back. How did you get interested in palliative care research and the stuff that you’re doing right now?
Kate: So it was a little windy path. I was always critical care bound since medical school. But definitely always had the bug to be the one to jump into the family meetings in the ICU, lead them. Constantly like observing the good, the bad that I saw when others were doing it. And palliative care was as a program was just growing at Penn moving from just consult hospice to actually having a team when I was training. And it’s interesting to look back. I have never myself called a palliative care consult as a trainee because we didn’t have one. They were at the VA, but not so much at our main hub hospital where I trained. So when I was in my last year of pulmonary critical care fellowship, we had two week elective. And I was studying advanced directives in renal disease as my master’s thesis, a little bit of a diversion.
Kate: And I kept saying, I want to do end of life care research with Scott Halpern and that’s what I did. And I started to realize in that two year process, boy running this RCT is awesome. And I love my team, but I don’t really love advanced directives. And so I took a palliative care elective in my last two weeks of fellowship with Nina O’Connor an amazing mentoring clinician. And just fell in love, realized I had both, missed the boat a little bit clinically, and it was clearly going to be where I wanted to spend my time doing research. And bringing more palliative care to the living with serious illness instead of dying from serious illness population. That just sparked me a little bit more. So I’ve took on two years of an apprenticeship model at Penn training with the fellows, but not really being one. Because I had grants and it was an interesting couple years. But here I am many years later with an exciting research career. And I practiced both on the palliative care consult team and in the ICU. So I’m right where I want it to be.
Eric: And your research as a critical care doctor and a palliative care doctor is not just on palliative care in the critical care unit. You’re looking at a lot of different things.
Kate: Yes. I think that palliative care in the ICU is an absolute important area. But I just, for some reason, have always come at it from even further back, 30,000 foot view, of all serious illness, cancer, non-cancer not just pulmonary non-cancer, even as a pulmonologist, not just in the ICU. I do tend to focus in the hospital setting. It’s where I practice. It’s what I know. But I take a broader approach.
Alex: Now, you gave a talk earlier today and you talked about how there’s been an explosion in growth of palliative care in US hospitals, primarily in the inpatient setting. But that the large majority of evidence for palliative care is actually in the outpatient setting where palliative care programs are not as well developed. And I know you’re very interested in clinical trials and pragmatic clinical trials. Could you share with us more about how you got involved and what you see the need is for clinical trials of palliative care. Particularly in the inpatient setting?
Kate: Sure. I think where I was talking today about where the need is from an evidence standpoint is. The field before me, many people in the field worked really hard to get at efficacy and show improved outcomes from palliative care. And then it stopped there. And I taking a bigger step back and looking at the population in the hospital or population in the ICU wanted to say, “Okay, if we can do it in this really controlled way, where we have all the levers and we know exactly what we’re delivering and went into whom with this very narrow population. That’s just not how the hospital works. It’s this really busy consult there. It’s all over the place. Patients have all sorts of problems. And does it work if you just pick it up and put it into this complex system and open it up to everyone who may be appropriate.” And that’s where the real world pragmatic eye came from. Can we move from efficacy to effectiveness and still see how we can improve care? It’s challenging, but it’s, I think that’s the only way to scale up what it is we need to do.
Alex: And for those listening, many of our listeners are not researchers. And I think you did just explain this clearly. But just to say it again, if efficacy is different from effectiveness. And that efficacy is when you test something and more of a highly select controlled environment if people are very likely to respond And effectiveness is when you test something in real world settings. Is that-
Kate: You just embed it into routine care and workflows, and you really aim for a broader population,, outcomes that are routinely collected care that can be provided in the course of routine care, and not trying to manipulate and control all of the factors. Because that’s just not, not how it’s done in the real world. Exactly. But you have a trade off. Because you still want to have some selected population that they’re likely to benefit. But you want it to be broader. And so you tend to see maybe less effect, but you’ve affected a broader group as opposed to a greater effect in a very narrow population. So there’s a trade off.
Alex: There are trade offs and you actually criticized prior studies. Well, your own probably included where people attempted to leap too quickly from the highly controlled environment of an efficacy study to like the broad based. Does this work in real world settings and then find out, well, no. But there’s probably because there’s a huge gap in the way that it was implemented. And so many lessons that were missed along the way. We tried to jump from A to Z and skipped all the letters in between.
Eric: So I missed the talk. So you got to tell me. Can you give me a example of one of those?
Kate: Yeah. And it is my own work. Criticized is strong. But I call it lessons learned. I think that implementation research, as a field implementation science, has become incredibly forefront and clearly needed. And maybe it just got a great name. And so now we’re all recognizing its importance. But what I shared is the paradigm of research has gone a little backwards. We all focused on studying the outcomes for patients and families of our intervention and then the processes to get there. Whether it’s the consult rate or documentation of a conversation, hospice referrals, those kinds of things, and then patient outcomes, quality of life, symptom burden. But when you take that from a small efficacy explanatory, traditional randomized trial and say, “My thing works. So I’m in. More people need this.
Kate: So we’re just going to put it in the hospital or my entire clinic or what have. You should all take this up.” You all of a sudden uncover all the ways in which the real world needs to be looked at a little more carefully. We work in an incredibly complex system. And so what are the components of the system that implementation of your efforts and your intervention are going to work well or not work well. And that can be things like sustainability, acceptability, maintenance, appropriateness, which I know hopefully we’ll get into, and many, many more. And so what the implementation science field has really shown is you should be designing for implementation from the jump. So your intervention design, your efficacy trial in a small setting should have implementation in mind. And I don’t think we all realized that earlier on.
Kate: We just designed the ideal thing and then tried it. And instead implementation should not be at the end, like dissemination implementation research comes later. It should really be integrated early on and be a key part of the research along the way of getting towards a scalable, effective intervention. So we have a little bit of backtracking to do was what I was sharing. Very much my own work included.
Alex: And I know that I mentioned the word pragmatic trial before. And I just want to give the opportunity for you to explain to our listeners. What is a pragmatic trial for those who aren’t familiar with that term?
Kate: Yeah. We touched on a little bit it is a rigorous randomized high quality study or evidence generation. But really taking what’s happening in the real world and trying to mimic that as much as you can in every aspect of your design. So your population is more broad. Your intervention might have to be a little bit less ideal and perfect and modified to work in that real world setting. The outpatient clinic and how that’s going to work. Or the hospital, the intervention delivery is by who’s in practice. You’re not hiring trained facilitators. You’re not hiring a bunch of social workers or nurses or docs to do it. You work with who’s there and they, they deliver care. It happens in the course of routine care.
Kate: They don’t come in for additional visits for your intervention. Adherence fidelity is looser, which is why it is lower often. Adherence to the intervention is often lower in pragmatic trials. You certainly don’t want it to be very, very low. That was something that happened in the proven trial with Susan Mitchell and Vince Moore, not for lack of trying, but they had a really hard time getting their intervention actually to the bedside. So it’s hard to then study what happened with it. If many folks didn’t get it.
Alex: So the proven trial was that the video in the nursing homes?
Kate: Yeah, the nursing homes. Yes. And while they identified thousands of patients and enrolled. Actually having the video shown and viewed was very low, I think less than 30% by recollection. I’m sorry if that’s incorrect, but pretty low. And so it’s not that we can’t then look at the effectiveness. But you do wonder what am I really concluding about this? Not to wade into the ACP controversy. I definitely don’t want to do that today. But-
Alex: Well, we go there frequently. But we don’t have to go there.
Kate: Yeah. Adherence to the intervention is more flexible. You might support the team. You’re there for check-ins. But you’re not training on fidelity and high… It’s just not quite. The other thing too, and outcomes are collected in the course of routine care. You’re usually not soliciting thousands of patient reported outcomes. You’re collecting for the EHR. What the clinic already collects from databases, admin claims. That’s purely pragmatic. And then there’s purely explanatory. I’m controlling everything your placebo versus medication trials. The real research is in the middle. It’s really hard to design a pragmatic trial. That’s truly pragmatic in every domain. And it’s pretty hard to have an explanatory trial in palliative care that isn’t slightly pragmatic somewhere. So it’s actually a spectrum. But we talk about them though like they’re vastly different.
Alex: The title of your talk earlier today was let me just pull it up. Improving Palliative Care Delivery Through a Precision Medicine Lens. When you say precision medicine, I’m assuming that you’re saying that we in palliative care, we should be drawing more blood and sending it off for specific biomarkers.
Kate: I know. Maybe we can call it personalized medicine. That’s the new hot term. This has just been at the foundation of my research since I started in palliative care. I was interested in palliative care delivery clearly. And this was just what grabbed me when I learned about the field strain of supply demand for clinicians and specialists. And it seemed like the solution was more consults. We need more consults. And we want a consultant in the ICU embedded. And that clinic wants a consultant in the ICU or in their clinic. Everybody needs more specialists. But that’s just not realistic as a hammer solution to everything. But there has to be a better way to know we are a complex intervention, whether it’s specialist or even primary palliative care delivered by the treating clinicians.
Kate: It’s still complex in terms of what we’re delivering. And so do all seriously ill patients need all components of palliative care at all times in their illness? Or can we start to ask sort of, who’s most likely to benefit from which components of palliative care? Because there are many. And when optimally and where, optimally? And then how do we do that? How do we deliver that in a value health system supported based way? And that’s been the structure, the who, what, when, where, and how that I apply to really any question. The micro question of small population, single setting, or the macro, how do I deliver this in the entire health system?
Eric: So let’s break that down for our audience and me, since I was in at the talk. What’s the who?
Kate: So the who is identifying patients most likely to benefit from, and I’ll say palliative care, but it could be your intervention. Whether it’s supportive care or a social work led intervention, an ACP led intervention, whatever it may be. I think of it as predictive enrichment, the idea of enrolling patients who are most likely to benefit from your intervention and being smarter about how we identify those. Instead of say, all patients with X disease who have an FEV-1 of whatever. Or all patients with cancer. So really being a little bit more, what we call predictive enrichment in clinical trials, to increase the likelihood of benefit. But also minimize risk of harm from treating people who wouldn’t otherwise benefit and minimizing risk of using a scarce resource inefficiently.
Eric: Right. So what do you think the best way is? Because I think a lot of teams are trying to figure out how do we decide or define which patients we should see. And also how do we target specific groups? Should we just use the referrals, whatever’s coming into us, whoever, whatever clinician decides. Should we have like a list of diagnoses or prognosis. What do you think we should do to identify patients?
Kate: Softball question. Thank you, Eric. It’s like you did attend the talk. So you nailed it. I think we’re done here. Obviously-
Eric: I listed everything. So hopefully that’s-
Kate: You did. We’re done. Obviously the usual care, what happens day to day is clinicians refer patients to palliative care. And that works clinicians largely know who’s sick, not sick. And they have a sense about their patients. Maybe they overtly ask but there’s some downsides to that. I tend to use the word haphazard and in a paper I wrote a long time ago with Scott about this Scott Halpern and my mentor about this idea of the who, what, when, where, how for palliative care delivery. We talked about this haphazard approach. It’s clearly led to likely inequities. We know we’ve seen that in palliative care research by many other wonderful teams. Implicit biases clearly play a role in practice. Competing tasks, clinicians are busy and have really important things in metrics they have to do.
Kate: And so palliative care falls down the list a little bit. That’s not very patient centered. Way to deliver this really important resource if they need it. And so it’s not that clinicians should be removed from the equation. No way. And none of our work does that. But they need a little bit of help. They need, they need some, a little bit of information and probably a little more than that, what we like to call an edge. Because we know information provision, I think it was the support trial, even giving them information about poor prognoses didn’t change their practice. So we have to do a little bit more to support our clinicians in identifying who’s likely. And that’s where things like diagnosis triggers, if you will, prognostic triggers, and then the ideal need-based triggers. Where I think the field would all love to go. But we just haven’t scaled that yet. We can do that in a small clinic for a handful of patients. But there’s no real system and systematic electronic way to identify need-based palliative care right now.
Alex: Yeah. I’m thinking of our own practice here, Eric. And do we have entirely a clinician referral-based practice? I believe, right?
Eric: Yeah. We have no triggers in our practice. It depends on the referrals. And honestly, I think we have high referring physicians and clinicians and we have low referring ones. So it depends on who’s on service, I think as well.
Eric: Our outpatient service does have guides around diagnosis and prognosis. I think need is hard without any of those other things. Because we have a pain service here, integrated pain service. We have palliative care who gets what, what goes, where. That gets really complicated as well.
Alex: It gets very local and individualizes as you were saying. That what the needs may be in one institution. When you go to need, palliative care may be best for some needs. But it may be that other services at some institutions are better for other needs.
Kate: That’s right. And I actually think the cool thing about a needs-based approach would allow us to better utilize the service. We are a multi-interdisciplinary group. How do we best utilize the power that we have in a really efficient way that allows us to reach more patients where they are and what they need. But we can’t do that if we just very crudely identify patients, even with things like by diagnosis or prognosis. There’s still pretty crude correlates for need. But I do believe they get us a little closer to at least overcoming the lack of systemization access like we talked today. It doesn’t fix the geography access problem, but you just said, within a clinic, depending on who’s on service is who gets palliative care. That’s a different access problem for patients and that can be fixed.
Eric: What would a need-based service look like? What does that look like?
Kate: I don’t know. I think we’d have to all just decide. I’ve always conceptualized it in, what is it, the national consensus projects, eight domains. I don’t know if that’s real actionable. But some version of domains of need that make clinical sense. Maybe there’s psychosocial needs because maybe I know what I could do about that. Or there’s physical symptom needs. And there’s psychological symptom needs. There’s end of life care needs. That’s how I’ve conceptualized it. But because we’ve not operationalized it. I don’t actually know if that’s what it’ll look like.
Alex: Yeah. It’s more aspirational. I wonder going back to… This is fascinating. We unpack each of these. If you move away from the clinician-based on the one hand you were saying, you don’t want to take the clinician out of it.
Kate: I don’t think patients want that either.
Alex: And patients may not want that. And I imagine that you probably would get pushback from clinicians. I’m remembering at another California institution. They instituted palliative care triggers, auto consults.
Kate: Oh yeah.
Alex: And they got pushed back both from the teams for whose patients were automatically generating palliative care consults. The hospitalists, the attending physicians on those teams were like, “What? I didn’t know, this was hap- Why is this happening? What?” And then on the other end you had the palliative care clinicians sometimes they felt like, “Oh good. I’m glad we’re seeing all these patients.” But other times they said,-
Kate: “This wasn’t really appropriate.”
Alex: Yeah. It wasn’t really appropriate. I’m not sure why we’re seeing every single patient with X condition.
Kate: Agreed. And that doesn’t help our strain problem. If we just open the floodgates, I think we’re obligated to do that in a smart way. If we’re going to systematize it in terms of at least… We can quibble about what the best way to identify. But I think we all agree, it should be more fairly offered to those we think would benefit. However, that may look. But we can’t open those floodgates and not consider the strain and the sensitivity and specificity trade offs, if you will. If whatever that trigger is, have a real impact on the palliative care clinicians.
Eric: So then there’s a question of who is going to get it. And then you also brought out the, when, what and where. So when. When should palliative care? Is that distinct from who? When in their disease course or when in their… How do you think about when?
Kate: That’s a good question. Less of a softball. So when is I, you guys know it’s early. It’s earlier. Early. It’s early.
Eric: Like at birth?
Kate: A diagnosis. It’s early. And that’s my pet peeve with the when is, we’ve said that for a long time early, earlier, at diagnosis. What does that mean? There’s like millions of patients with COPD like at diagnosis. I don’t think so. Or do they even want it? Is that appropriate at diagnosis? Certainly, probably not specialty for everyone. Palliative care, maybe primary palliative care. So I think to your point, the when, even the where, and the what, I had this diagram had you attended the talk, Eric, all of these bidirectional arrows. Because no, they are not isolation. “Oh, if we just knew who, then I can figure out…”
Kate: You’ve got to the who, and the when, and the where, and the what are probably all interrelated. So the COPD and metastatic cancer patient. I’m arguing, might have a different when,, and where and what. And we should figure that out in some empiric way. I think we all have a sense that it’s different. But how? Let’s study it and figure it out. And then tailor interventions and study them that way at the optimal time. And I think we can do that empirically.
Eric: Yeah. I guess one question is brought up. We had I think it was Vicky Jackson. We talked about all these randomized control studies, even looking at lung cancer versus colon cancer. Maybe there’s a difference we have to do randomized control trial for all these different diagnoses. But this also makes me think, how important is it the diagnoses or the overall theme of what’s going on. And the need issue going back to what you were saying before. It’s not really the diagnosis. It just reminds me of like the gem for chronically critically ill patients-
Kate: Oh yeah. The family meeting.
Eric: -in ICU should family palliative care visit once, deliver prognosis and then leave. No, that’s a horrendous idea. It was negative, maybe increased PTSD symptoms. It was the wrong intervention at the wrong time for the wrong people. And should this be based on diagnosis? Should this be based… How do you even think about like running these trials and figure out who gets, what, when?
Eric: I think I asked 17 questions right there.
Kate: No, it’s okay. You hit it though. We’re we’re back to why need would be so aspirational. I don’t love that. We, I’m going to say, pit diagnoses against each other. Because I have to be honest, I think that the chronic, life-limiting illnesses, nonmalignant are going to lose out, especially palliative care is just going to get further shifted towards oncology. If we study it that way, because of the trajectory of those diseases. You’ve all seen those curves. It’s, it’s a prolonged chronic step down. Intervening is almost harder to know when and where in those course of illness. As opposed to the beautiful study by Jennifer Temel in non-small-cell lung cancer in which it was like at diagnosis. And then there’s this clear trajectory. And so I don’t love diagnosis-based approaches. I understand why we do them.
Kate: They are easy to identify. It’s something you can just very specifically and accurately know. And that’s why in the talk I gave it as a spectrum. It’s like clinician, haphazard, bias, disparities, not so great. But they’re an important component. Diagnosis still pretty crude. Definitely doesn’t correlate with need. We’ve shown that certainly in pulmonary disease. Even if you say advanced, you look at their physiology of their lung disease, their symptoms don’t correlate all the time. And then prognosis, I think gets us a little closer. Alex and I, and others talk about, it’s not the prettiest story to talk about prognostic triggers. It gets conflated with end of life care. We’re just shifting palliative care towards everyone’s dying. But prognostic models, don’t just identify dying people. They identify people who are really, really sick and at risk of death in some timeframe predetermined.
Kate: But nevertheless, it’s a hard thing to talk about and implement for that reason and then need. It would be amazing. And I think we should still work towards it. I’m not saying it’s aspirational and we’ve given up. It’s going to take a lot of work to really make it operational on a systems level. So my thing is just justify how and why you’re identifying your population and why they’re likely to benefit from your intervention. And I think as long as we do that, then you can feel good about your match to intervention.
Eric: And if we identify a population of need, do you think there are things that we can do to increase access or referrals from that population? Are you guys doing anything in particular at Penn around this? I know one thing we’re doing in clinic is obviously oncology is an area of palliative care knows a lot of need in. So we attend like oncology huddles, like FaceTime. That’s really going towards the clinician and trying to increase referrals. I think you’re also doing something interesting around nudging. We also had a great podcast with Scott Halpern and Jenny, not too long ago on that. What do you think about that?
Kate: That that’s a lot of where my pragmatic trial research is going. If you look at there’s like a development and progression in my learning through my trial designs. And my first one in hindsight was a diagnosis-based trigger. And we didn’t even call it that at the time Scott and I. But it was. And then our next trial was still diagnosis. But we pulled in severity of illness to get it. That was an ICU based trial. But we both identified people with diagnoses. But also a severity of illness that was quite high in getting at correlating with poor prognosis. And then my third trial, which is something I’ll be launching at Penn is leveraging a prognostic model for six month mortality in our six hospital system embedded in the EHR.
Kate: And we did pilot work and chart reviews to say, “What threshold says, you’re sick enough in the hospital.” And we won’t annihilate our palliative care team. Finding that implementation balance to trigger a nudge in the EHR for, again, moving away from just triggering specialty palliative care, which we’ve done in past trials and is important. But really trying to get towards this collaborative integrated model where we nudge primary palliative care. But it’s up to the clinician. And if that doesn’t feel appropriate or they prefer the specialist the nudge also nudges specialists, if they’re choosing not to provide primary. So like consider something basically.
Eric: So a nudge. So what I think about a nudge, if I’m remembering correctly from our last podcast, which we all have a link to in our show notes, is something that pushes people towards a particular direction. But it’s not a forced choice. They can choose something else, like changing the default. What can you share what nudges you’re using?
Kate: Sure. So you’re correct. There’s a hierarchy of nudges, if you will, that I’m sure Scott and Jenny talked about, where you more strongly push, at the trade off of autonomy. And that once you say it that way, clinicians don’t really like losing autonomy. And you already gave a wonderful example. The automated consult is not going to work. You can’t take away the bedside clinician’s autonomy. They have a lot of information and good knowledge about that patient. But you can nudge them to have the final autonomy to consult or to do it themselves. But they can’t unknow. As I said, you can’t unsee what I saw in Beta Breakers, I’m thinking, you can’t unknow that you told them palliative care is recommended for this patient. And either you should do it or you should call experts, or you should have a reason why you know better, you think this is not appropriate. And no judgment.
Kate: There’s no penalty for saying, no thanks. But they can’t unknow it. So it does work. And so defaults work they increase consult rates. That’s with an opt out. “Hey, a consult’s been ordered. It’s not active yet. You can cancel it. But here’s why.”And then they either cancel it or they don’t. And it becomes active. It works. It increases consult rates. We’ve tried things like accountable justification, which I really like. It’s this idea that as clinicians, we all have reasoning behind our medical decision making and we’re accountable for that. All of it. And so it’s within normal practice to have a reasoning and be accountable for it and document that. Because that’s what we do. And so in the EHR you can say, have you done this practice that’s recommended. So palliative care for this sick person, if they say no, they say and why not? And they offer a free text reason why not. No penalty just offer why not? If they say yes, they’ve done the thing. So just being accountable for that you’ve done or not done the recommended practice and justifying why is actually quite powerful as well.
Eric: And I’m guessing there’s also just it’s less effort just to say sure, just do it rather than having to figure something out.
Kate: Yeah, maybe. Some clinicians may find the path of least resistance. I’m really busy and I’m fine with it. And I think it’ll be fine. And others have on occasion written some really not nice things in their text justification.
Eric: Potentially the social norms. Most physicians would call palliative care at this point, do you want to?
Kate: Right. Exactly social norms. Most clinicians would do that. So all of those, they don’t restrict autonomy. But they are effective in certain cases.
Eric: Are you using multiple nudges in your Ponder ICU trial?
Kate: So the Ponder ICU trial did use multiple nudges. We just finished enrollment during the height of COVID for that used accountable justification. And it used a focusing effect, where we leveraged the very natural tendency, especially for ICU clinicians to be highly focused on specific things. And instead of only being focused on the mechanical ventilation parameters that day, we force them to focus on prognosis. They don’t have to share it. They don’t have to discuss it. But they have to think about it. And we do that by just asking them about it. What do you think the likelihood this patient survives over the next six months? And if they do survive, what do you think their functional limitations? Maybe from bedbound, more bound, to totally fine. And there was some really amazing work by Allison Turnbull at Hopkins and others that showed just having clinicians focus on prognosis and moving them out, taking the blinders off, if you will.
Kate: And focusing on something else changed their willingness and likelihood of discussing recommended practices in critically ill patients likely to not survive. Which are recommended by many of our professional societies, which is to share and discuss prognosis and to talk about alternative options to continuing aggressive care. And just having the discussions, not making certain decisions a certain way. But improving communication practices and clinicians were more likely to do that just by focusing on prognosis. So these silly little harnessing all of our internal biases and mind tricks that we do to get through a busy day can be really effective.
Alex: I want to ask one question. I know we’re running out of time here. So this is like a huge area. But in a quick way, could you let us know what do you think the key outcomes should be?
Kate: Oh, Alex. [laughter]
Eric: I’ll make more time for this question. I want to hear the answer. [laughter]
Alex: The palliative care trial. What are we aiming for here?
Kate: This feels like a setup. [laughter]
Kate: Yeah. Right. Thank you for the opportunity today. So where I’ve landed after not nailing it in my first two trials, I just fully admit is I wish we could get away scientifically from my need a primary outcome. I feel like these trials have to have stories of outcomes. There have to be process outcomes. There have to be if possible patient or family reported outcomes would be ideal. Even if it’s in a subset of a pragmatic trial, which we’re doing in our next trial. Because it’s just so important, even if it makes it slightly less pragmatic. Like I said, a spectrum. Traditional clinical outcomes that are important to health systems and hospitals. I know it’s icky, but we got to talk about it. That’s how we keep practicing. It’s how we get to do what we need to do.
Kate: So you need the whole story. In addition, you need the things that help you understand if palliative care consults or primary palliative care can result in things that we don’t know if they were patient centered. Comfort-focused care in the Ponder trial was an outcome. And was that patient centered was a good conversation had about that. And so like understanding what went on and trying to get at that is where the process outcomes come in. And then qualitative. I lost some opportunities to do really good qualitative work as trials are ongoing. Once you get the quantitative data, if you understood what was happening along the way, qualitatively with different stakeholders, it might help you interpret that slate of outcomes. But I am just totally of the notion that we don’t have a single outcome and likely, never will. We’re too complex of an intervention for that. I know that was a dodge. A whole minute.
Alex: That was a great answer. That was a terrific time efficient answer.
Eric: Well, I got one more question. As I know, you’re not a self-described trialist, but I’m going to call you a trialist, thinking through, and you even mentioned about we have a lot of evidence for outpatient palliative care, great randomized control trials, some inpatient. And we keep on bringing up primary palliative care. We’ve had several episodes on primary palliative care interventions that have been negative, one large one in nursing homes doing primary care. We had another-
Alex: We did one on patient care Centers for patients with cancer.
Eric: Do you think we have evidence, we keep on mentioning, for primary palliative care? Have we figured out, does primary palliative care even work? Because they’re in a system that really gets the results that it gets. Because it’s fragmented, it doesn’t work. And just trying to teach somebody or get champions, doesn’t seem like it’s working.
Kate: Yeah. I think that’s a tough question to answer from a does it work in general perspective. Only because you’re comparing like apples to oranges, to pears, to bananas, to steak. If you look at the primary palliative care interventions, no two are alike. And they’re all quite small studies. Mostly. I can’t say that with certainty. Butut we know there aren’t massive large palliative care trials out there. And so I don’t know if it works. We haven’t even really defined what primary palliative care is honestly. So I don’t think we can say it works or doesn’t work because we haven’t studied the same thing over and over. We keep setting something different and I understand why. And I think people have tried to tailor what they believe primary palliative care to be to their setting or their population. But we’re back to not really knowing then what works because we change it every time. And we’ve not had on it in a broad, large population.
Eric: I also feel like it’s this holy grail thing. Oh, like we will never have enough specialty palliative care.
Kate: Right. So train them up.
Eric: So let’s just do this primary palliative care thing. Now you do this thing. Here’s some time to do it. That’ll solve our workforce issues. When we’re not very specific what we mean by primary palliative care. And we don’t have really good evidence on what really works when we think about primary palliative care.
Kate: I don’t know if you’ve noticed, but most of my work is in specialist palliative care because I find the primary palliative care problem so much harder. I think smarter people should solve it. I like to tackle complex problems. But that one has just alluded me and I think smarter people are working on it. So I stay in my specialist palliative care mostly.
Alex: Well, I love that you’re working on a mystery going wherever it leads.
Eric: Yeah. Maybe we can just run down this dream of primary palliative care.
Kate: Awesome. Thank you so much, guys. This was fantastic.
Eric: Okay. Thank you too. Unfortunately, we’re all in the same place, but not in the same place. Next time when we have you on, hopefully we’ll log in the same place.
Eric: Very big thank you for being on the podcast with us.
Kate: Yeah. Thank you. I’ll see you in three seconds.
Eric: And thank you, Archstone Foundation for your continued support and to all of our listeners.