Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, we have a full house again today.
Alex: We have a full house today. We’re delighted to welcome Kelly Vranas. She’s Associate Professor of Medicine, Pulmonary and Critical Care at Oregon Health Sciences University. Welcome to the GeriPal podcast, Kelly.
Kelly: Thank you so much.
Alex: All right. And we have Abby Dotson, who is a Research Assistant Professor of Emergency Medicine, also at OHSU, and Executive Director of National POLST and Director of the Oregon POLST Registry. Welcome, Abby.
Abby: Thanks for having me.
Alex: And we’re delighted to welcome back Karl Steinberg, he’s a palliative care doc and a geriatrician. He’s been a hospice and nursing home director. He’s President of National POLST and recent past president of AMDA, the Long-Term Care Association. Welcome, Karl.
Karl: Thanks for having me. Hey, it’s National POLST Collaborative now. We changed our name.
Alex: National POLST Collaborative. Thank you. Great. Good to know. And we have Scott Halpern, who is Professor of Medical Ethics and Health Policy and Director of the Palliative and Advanced Illness Research Center or Payer Center at the University of Pennsylvania. And he’s a professional Uber driver for his daughter’s softball games.[laughter] Scott, welcome back to GeriPal.
Scott: Great to see y’all.
Eric: We’re going to be talking about all things POLST, but before we talk about that subject, I think somebody has a song request. Is it you, Karl?
Karl: Yep, it’s me. And the song is No Hard Feelings by the Avett Brothers.
Eric: Now Karl, why did you choose this song?
Karl: Oh gosh. How long do you have? I mean, just beyond the literal end of life, what happens when we die stuff, I mean, there’s just so much more. It’s like how liberating it is to eliminate resentments, regrets and envy from our lives and how great it is in our clinical practice when we’re able to help families reconcile after an estrangement, how much relief that brings. There’s an old 12 step thing about harboring a resentment is like swallowing poison and then waiting for the other person to die. And just similar to death, right before death, before we go to sleep every night, it’s just such a relief to not be consumed with anger and to sort of have no enemies. And in the context of a friendly point, counterpoint that we may be having today, that ultimately we are not enemies. We all agree, I think that we want people to get gold concordant care.
Eric: That’s lovely.
Alex: That’s great.
Eric: Great setup.
Alex: [singing] “When my body won’t hold me anymore. And it finally lets me free. Will I be ready? When my feet won’t walk another mile. And my lips give their last kiss goodbye. Will my hands be ready when I lay down my fears, my hopes, and my doubts? The rings on my fingers, and the keys to my house. With no hard feelings. Lord knows they haven’t done much good for anyone. Kept me afraid and cold. With so much to have and hold.”
Eric: That is a beautiful song.
Alex: Great choice, Karl. Thank you.
Eric: So let’s jump into it. Physician Orders for Life Sustaining Treatment. I think some places call it a little bit different. Karl, for our audience, can you just give us a brief description what POLST is?
Karl: Sure, and I have to correct you again, it’s no longer Physician Orders for Life Sustaining Treatment, although that is still in the statute in some states, including California. But we’ve moved away from that term, that long thing because it’s not always physician orders, number one. And then the whole notion that life sustaining treatment is a little value laden. Like doing CPR on a 68 pound 102 year old is probably not going to be life sustaining. So now it’s just POLST, the word POLST, Portable Medical Orders.
Eric: So it’s not an acronym anymore?
Karl: Right. Well, we’re trying to move away from that. And so you’re right, there’s believe it or not, I think there’s 13 different names for POLST paradigm type forms. My favorite is T-Pop, but sounds like some kind of hip hop thing. Not that I don’t like hip hop, disclaimer. Anyway, so it’s basically portable medical orders that help translate advanced care planning conversations and discussions about patient’s treatment preferences into actionable medical orders. And it’s in virtually every state now. In some states it’s official, it’s been passed into law here in California. In other states it’s sort of just by agreed practice and that sort of thing. Obviously there are a lot of moving parts. The National POLST Collaborative is an organization where all of the state POLST coalitions or task forces, which are housed in a variety of different places, get together to work out best practices and so on.
Eric: And Abby, are there similarities between all of these different POLST forms amongst different states?
Abby: Yeah, there are. And in fact we have developed on the national level as a data standard that combines the elements that really go across all states. There’s one medical section that Oregon, where I work, that artificially administered nutrition is no longer on the form. That is on the national form and it is on most state forms. And so that’s pretty much the only data element that might differ, but really the main gist of the form across most states is pretty uniform.
Eric: And you have CPR question, you have a kind of big picture focus on the type of care you want, whether it be focused on comfort. And then you have a section on artificial nutrition, potentially except for Oregon.
Karl: I think they’re the only… Yeah, that’s gotten rid of it. There are also some states, I think Washington still has antibiotics on theirs and-
Eric: It’s on antibiotics?
Karl: Yeah, which obviously whether or not antibiotics constitute a comfort measure, that’s a topic for a whole nother podcast. Right. But yeah, and then the language is a little different among different states. So you might remember in California here we used to have limited interventions and comfort care only. Well, we’ve modified that to instead of limited, we say selective and instead of comfort care only, we say comfort focused treatment just to sort of be more goal directed unless something that somebody’s going to say, well, I don’t want to limit treatment or I don’t want to do comfort care only.
Eric: So then the question comes up and I’d love to turn to you, Kelly, what do we know about the evidence base so far? How long has POLST been around for?
Karl: Since the nineties. Yeah. Susan Toll started it in Oregon back in the nineties. By the way, Susan, who’s the matriarch of POLST, is retiring later this year. And we wish her all the best, she’s been a wonderful advocate and I believe has helped so many people get Go Concordant care and avoid burdensome treatments that they wouldn’t have wanted.
Eric: Yeah, it has been on a lot of the research studies around POLST Two. So Kelly, you did a great paper in JAGS, which we’ll have a link to on our show notes, a systematic review looking at the evidence base for POLST. What do we know about the evidence base for POLST?
Kelly: Yes. So thanks for that. So yeah, we wanted to ask that question a couple years back. We ended up doing a systematic review really trying to understand the influence of POLST on treatment intensity for patients who are at the end of life. As you mentioned, it was published in JAGS in 2020, and we really started from the time of inception of POLST, so in the early 1990s, up until about February 2020 was the date that we cut off. And so we looked at in total there were about 105,000 patients across 20 observational studies. So that’s one thing to note is all the studies that were included were observational, only one was prospective, and there were other 19 were retrospective cohort studies or even just some descriptive studies in there. So that’s one thing to note about the evidence base. The other thing to note, some interesting characteristics. The majority of those studies were done in the Pacific Northwest, so a lot coming out of Oregon, Washington, some on the east coast, but mostly in the Pacific Northwest.
And about over 90% of the patients included were white. So just with those caveats about the evidence base there. But with that in mind, we did conclude that POLST probably does reduce treatment intensity at the end of life for patients with chronic serious illness. And for a few reasons, which I’m sure we’ll get into, I think it’s probably most effective upstream of the acute care setting, more in the nursing home setting or for patients who are not presenting in the hospital or emergency department setting. But we did conclude that it probably does, as I mentioned, reduce treatment intensity with those caveats that I mentioned. And that conclusion was really based on about eight high quality studies using the systematic review Newcastle Ottawa Observational Cohort criteria for good quality, since again, these were all observational studies. But we concluded out of these eight good quality studies with a moderate to large treatment effect with consistency across those studies. Again, that POLST probably does reduce treatment intensity at the end of life, particularly upstream of the acute care setting, trying to kind of stop the clinical momentum that patients experience once they get to the hospital.
Eric: Yeah, and you also published another study, it was one of the JAMA journals, right, looking at POLST ICU admissions.
Kelly: So I think the one you’re talking about, there was a publication in JAMA that I was a middle author on. That’s true. It was really led by Bob Lee and the University of Washington group. And they looked at ICU admission, the impact of treatment orders on POLST among patients who had died, but within six months of their death. Did POLST, was that associated with ICU admissions? And they did find that treatment limitations were associated with reduced ICU admissions among this decedent group at two academic hospitals up in the Seattle area, I think. So that’s consistent. That study was included in our systematic review. But I will say, I think one really interesting thing in their study was that up to around 40% of those patients actually received POLST Discordant care despite having treatment limitations on their POLST. So I think that was one interesting finding that we can talk more about too.
Eric: And POLST discordant care, for that one, do you remember what that one was? How was that?
Kelly: Yeah, so I believe for patients who had treatment limitations or had orders for comfort measures only, they ended up getting something that would at least theoretically on paper look inconsistent with that. So getting admitted to the ICU and getting some sort of form of aggressive medical treatment, but their primary outcome was ICU admission for that.
Karl: I think we all know how that kind of stuff can happen. I’m not blaming any particular specialty or anything like that, but also people do change their minds. On that same kind of research topic, I don’t know if you saw David Zingman and Neil Wenger just put out a piece in JGIM within the last month with over a million nursing home residents over five years, and those that had a POLST that indicated DNR Comfort spent 56 fewer days in the hospital and 22 fewer days in the ICU per a hundred person years. I mean highly significant. So we will get you a link to that if you don’t have it.
Eric: Oh, that’d be wonderful. We’ll put that on our show notes. Now, Scott, you published a viewpoint, I think you were a senior author on that viewpoint a couple years ago. And what I remember from that JAMA viewpoint was kind of going into what we heard a little bit about the evidence is these are mostly just observational studies. And I think in that one you were arguing that maybe the evidence for POLST is not as great as we’d hope, especially as we try to push POLST this POLST paradigm into larger and larger usage.
Scott: Yeah, I mean, first of all, I really like Kelly’s systematic review. I think it did a really good job being objective about the evidence that exists. I would characterize the evidence base around POLST, which does have the effects that Kelly explained, and it directly analogous to me saying that when I turn the calendar behind me from March to April, I am causing rain to fall. And what I mean by that is all of these studies are inexorably comparing people who’ve chosen to complete a POLST to people who’ve chosen not to or chosen limited care or comfort oriented care on a POLST to choosing aggressive care and then concluding that it’s the POLST that has caused the differences. That’s ridiculous. There’s all sorts of differences between people who complete POLST and people who don’t. There’s all sorts of differences between people who choose comfort oriented measures and people who don’t. So I don’t think we know anything about the effectiveness of POLST.
Alex: Can we turn to Abby and Karl. When you hear that, what do you think? And Kelly maybe as well just go ahead.
Karl: Well, yeah, first of all, I think it would be lovely if we could figure out a way to do some studies. I’m a clinician, I’m not a researcher, and I like to say I don’t need a fricking research study to show me that with all this advanced care planning hoo-ha, the whole semantic masturbation over whether it’s illness, serious illness, blah, blah, blah. I don’t need a research study to tell me that that conversation I had at the bedside with my nursing home resident who says, “Doc, I’m tired of going back and forth to the hospital. I want you to do what you can for me here. And when my number’s up, I’m praying to God every night that it’ll take me anyway.”
I write a POLST order. The POLST order didn’t cause that guy to get gold concordant care, but it’s certainly helped if the doctor on call who gets a call when this guy has a change of condition and in the middle of the night knows what that form says, that guy’s less likely to get put on that horrible ICU treadmill and wind up on vent when he goes over there too unconscious to be able to say otherwise.
So anyway, I don’t disagree with Scott. I think it would be lovely if we had better research, but POLST is a tool. I mean, insulin can be really dangerous too. And we’re not saying, well, we shouldn’t be promulgating the use of insulin or opioids. And I think so many of the problems we see with POLST are problems that have to do with people misusing it. It’s not the tool itself, it’s that doctors are handing out POLSTs to people at they’re welcome to Medicare or annual wellness exams. People who just want to default treatment. Don’t give that person a POLST. I mean, we know that they want CPR, right? We don’t need a piece of paper to tell us that. Then you create a conflict down the line. So I think, anyway, I’ve rambled long enough. I hear what other people say.
Alex: Well, let me just ask you this one question. Is POLSTs mandating in California for all nursing home admissions?
Karl: Oh, contraire. I’m glad you asked that question. Listeners, wherever you are, POLSTs is never mandatory. It should not be offered to people who just want default treatment because what they’re saying is right now today, if I were to go down, yes, I’d want you to give me a jolt and try to get me back. It doesn’t mean that five years from now when I’ve got moderate to severe dementia and metastatic pancreatic cancer, I still want that. And so yes, it’s not required and we’ve been trying for years, ever since POLST came out in ’09 here to stop nursing homes from handing it out with every admission. We’ve not been particularly successful, even with the Department of Public Health sending out repeated letters about it. But thank you for asking that question.
Abby: I to follow up on Scott and Karl and even Kelly’s point about that, the limited studies, the studies being really confined to the Pacific Northwest. And so we do need better studies. Of course we do. But we also, we need the evidence to then show the value for POLST, but we need the programs to study to show, to be able to draw conclusions from. And so it’s a bit of a chicken and egg situation where we need to… Yes, we have the anecdotal evidence of how valuable POLST is. We have some data mostly out of Oregon because we have the longest running registry in the nation, but we need more studies. We need more info put out about POLST in its outcomes. And so I don’t disagree with that, but I don’t know if we have the ability to say that we don’t know its value just yet. I think that’s opposite.
Kelly: Yeah, I just wanted to add, I think Karl’s point about POLST as a tool is a really good one. I think as a tool for communication, in that lies its greatest value. When it’s itself as an intervention, I think that’s where problems arise. So just to make that more concrete, Scott and I did a study a couple of years ago as well looking just at OHSU patients who presented to the emergency department with POLST. And we were able, because of the way OHSU has the registry and POLST link had just been integrated into our electronic medical records. So you can actually quantify how often it was accessed, at least by either calling the registry or clicking in the electronic record. It was only accessed about 7% of the time among about 2000 patients who came to the ED over about a two year period with POLST.
And that was really surprising to me because I thought of all places in Oregon where we can access it all these ways, I thought it would be higher. And moreover, about 40% of those patients with POLST had last signed it or filled it out two years prior to that presentation. So again, I think as a tool for communication to start conversations with patients to elicit their preferences, that’s an important part. But when you actually are trying to use it as sort of the stop gap for whether patients get care consistent with their goals in the acute care setting in particular, there’s just accessibility issues and how much does the POLST at a given time reflect their current health state is another issue that our study kind of revealed a problem in.
Abby: Kelly, I’m glad you brought that up about OHSU because of your study and those low numbers, the OHSU emergency department did a whole quality study and put into place a different policy on when and how POLST should be checked, whose responsibility it was. And that number is now to 40 to 60% as opposed to the 7% when the study was done, when the link to the EHR was very first made. So I think those studies can drive policy and improvement and POLST use and quality and value.
Scott: Well, are we sure, Abby, that represents progress?
Abby: That a patient that has POLST, that POLST is being checked? I think that policy in the emergency department is showing that no matter what that provider is looking to see if a patient has a preference.
Karl: Well, Scott, are you asking the question, is it good because maybe the conversations that accompanied these POLST forms were just either non-existent or just really shitty? Or something else?
Scott: I don’t think any of us would argue that conversations with patients about their goals and values is a good thing. We’re all on the same page there. Whether or not POLST, and it’s not just POLST, advanced directives, written advanced directives, video-based advanced directives. I’ll put it all in the same category and I’ll draw one distinction. At least with advanced directives, we now have at least five randomized trials including one by my group showing that they do absolutely nothing. In POLST, we don’t have a single randomized trial. There are differences, but I think you could make a credible argument that good high quality communication with patients is a great thing and we don’t need POLST or advanced directives to make it a better thing.
Eric: So Scott, two questions for you then is since this is aimed, POLST is people with limited life expectancy, we also have no randomized control trials of CPR of individuals in this population. So we have the intervention is a big part. Again, it’s not the only part. If you look at CPR in this population, again, same thing. I don’t even know if we have good observational studies of CPR that meets people’s goals. So the question of evidence and then the question is what’s the alternative? Because if the alternative is to get rid of POLSTs, that means if somebody really wants to be DNR, there’s no other good option for a durable order for that individual.
Scott: Yeah, I’m actually super glad you raised that, Eric, because I actually think that had POLST stuck to being a portable and durable order to not use CPR and never went beyond that, that would be a great thing.
Eric: So your argument is really for section B and potentially C in the California form around the type of treatment you want, comfort focus?
Eric: Did we switch from full treatment to something else because full treatment sounds weird. Karl, what’s the top one again?
Karl: It’s still full treatment, but you can be DNR full treatment because let’s say you have COPD and you don’t want them to do chest compressions if your heart stops, but if you have respiratory failure and you’re failing BiPAP, you don’t mind being intubated again, something like that. But yeah, full treatment. But I just want to, Scott, I guess we just disagree on this. And whether tube feeding should be on there, that’s never an emergency decision. And by putting it on there, you’re sort of making it an option for people who it probably shouldn’t be an option for. But to me it’s extraordinarily useful to have that section because some people want, yes, they want full treatment and for some of them want, but they don’t want to be on vent forever. And so they can put trial period of full treatment, at least here in California they can do that. And in my nursing home practice, most people want to be DNR selective treatment meaning like no heroics. And that resonates with people and that helps direct our therapy and people can change their minds, but if they get so ill that they’re not able to do that, we sort of have a roadmap to go by. So I do think it’s useful to have that additional information.
Eric: And like an nursing health population knowing what to do on call, whether or not to transfer that person to the hospital. Do you find that helpful, that section?
Karl: Yeah, very much so. And there’s also a section that says transfer only if comfort needs cannot be met in current setting. And that also often will prevent having somebody have to be put through the unpleasant bewilderment and all of the awful things that emergency departments do to people.
Eric: We’ll go Scott and then Kelly.
Scott: Yeah, I was just going to point out that I think Karl, there’s plenty of room for disagreement about our beliefs about POLST. And I agree we probably do disagree about our beliefs about POLST. My argument is that there is literally no evidence whatsoever about the effectiveness of POLST, and I don’t think there’s room for disagreement there.
Eric: You mean randomized control evidence? When you say no evidence, you mean-
Scott: Evidence that is not entirely or at least largely driven by confounding.
Eric: So pretty much every observational study.
Scott: But there are high quality observational studies that use quasi-experimental methods. They’re still observational. But as Kelly would be the first to say there are none of even those in this context. This is literally the lowest of the low evidence basis. But the point of that is I can’t conclusively say that POLST doesn’t work. And I’m not saying that. What I’m saying is the entire field of serious illness care has for decades been plagued by a really weak evidence base. And I think that is among the reasons that we’re seeing major foundation after major foundation pull away from funding serious illness care, Canby is pulling away, the Moore Foundation has exited entirely. This started decades ago when the Robert Wood Johnson pulled away. Why are they doing that? Because we haven’t done our job to document the value of what we’re doing. And if we’re going to continue to rely on conjecture, that problem is only going to perpetuate.
Alex: Well, you guys need to get busy, you researchers. I mean, come on.
Abby: I was going to say let’s get some funding towards this because I don’t think it’s the lack of wanting to know or the lack of interest, but we are all just operating on what we have the grant funding and the bandwidth to do. And that makes it hard. Again, you can’t prove something if you don’t have the ability to study it. And so getting traction for the program and getting traction for the research kind of go hand in hand.
Karl: So Scott, what’s the criticism like this Zingman study that just came out with, I mean large, obviously a million nursing home residents and those that had DNR comfort care on a POLST spent 56 fewer days in the hospital and 22 fewer days in the ICU per a hundred person years. I mean, I guess you’re going to just say that the POLST didn’t do that, that would’ve happened anyway with or without a POLST? Or what?
Scott: Well, I haven’t read the Zingman study, so I don’t want to spend any great amount of time commenting on a study I’m not familiar with. But it sounds from your description that the basic concern would arise there too, that whether it’s the patient or the patient’s family caregivers that have values and goals that are promoting comfort oriented care and, oh by the way, they also completed a POLST, that’s entirely plausible.
Karl: Okay. I want to make a disclaimer. POLST is not and has never been about trying to avoid costs for payers. It is designed to help people avoid overly burdensome treatments that they don’t want. So just to make that clear, I know Susan Toll would be pissed if I didn’t say that.
Eric: Well said. Kelly, I think you want to jump in here.
Kelly: Yeah, I actually had a question for Karl. I was curious in his experience as a geriatrician and working in the nursing home, if you’ve been able to operationalize revisiting POLST over time for your patients and if their preferences change, is that something that you’ve incorporated into your practice?
Karl: Well, sure I do, but I can’t say everybody does. But one nice thing about nursing homes is that because of the MDS process, there’s a mandatory quarterly care plan conference where they go over everything on the MDS and at least a rudimentary conversation saying, Hey, is this still accurate? Whether it’s a POLST or whether it’s just some other code status documentation, treatment preferences is discussed every quarter.
But I think we could do a better job of that. But the real thing is most people who pick DNR Comfort or DNR selective don’t really change it that often, that once in a while they do. What changes is when people are asked to fill out a full code POLST because the conversation was this, the nurse says, Hey, if your mom’s heart were to stop, you’d want us to restart it, right? And then now you’ve got a full code POLST on this dementia patient that should have never been done. And anyway, but people will change their minds in that direction, obviously, just like any of us would when our condition starts to decline or we’ve got a limited life expectancy.
Alex: And that’s where I always think about when I think about POLST. I actually don’t think it’s great as a communication tool. I think for me, I use as a documentation tool that when I have a great discussion with patients, so we just had a series of podcasts on communication really focused on doctors try to fix a problem. So you have your problem, you try to fix it, but really in the heart of it is forget about the intervention. Nobody wants to have CPR, like Bob Barland says he hasn’t met a person who wants this intervention. What they want is things that are important to them, maybe live longer. Gretchen Schwarze like surgery, four things, live longer, feel better, be more functional, make a diagnosis. Those are the only four things that surgery can accomplish. So it’s the goals that are important. And then together with shared decision making, we make recommendations which would get around that issue Karl just brought up. And I use that as that documentation about what they want, recognizing that not everybody does that. And when you standardize that process and then you create quality measures around that process, potentially, I’m guessing Scott’s probably going to agree. It potentially creates some incentives potentially for bad conversations. Is that how I should be thinking about this, Abby? Is less of a conversation or more of a conversation tool, more of a documentation or how do you think about it?
Abby: This is absolutely a conversation tool and it’s a conversation starter, but then it documents the ability to document that conversation over time and potentially connect dots between care teams when you have this in the electronic healthcare record. So somebody can look back and say, okay, this conversation was had and do you want to talk to me about why you chose these? Or you have some additional orders here that mention above and beyond what’s just listed, what does that mean and how should we go about it next? I think that’s absolutely the case. And then I think if we take this to the larger scale, which is we need to have these data standards in every EHR so that, A, we can do these studies, and B, it’s interoperable across state lines. We can see a patient’s care preferences at all times, and that keeps the quality of the form and the standards a lot higher, then we can start to see some of these results come out. And I think that’s going to be a big thing moving forward. National is really pushing for is a technology solution to support this as well.
Alex: Well, we’re going to make sure we talk about registries, but I want to be clear, what I was talking about too is I actually find it a useful conversation starter when somebody has already done it and I review it with them. I actually don’t find it helpful at all as an initial conversation starter because now it’s a menu of options rather than shared decision making. Karl, how would you use it?
Karl: You want to start with the conversation first and then you can get into specifics if the person’s even appropriate for a POLST, right? Because if they just want default treatment, you don’t need that. Now, if they’re one of those rare people that says, Hey, I want my life for long until the last possible instant medical technology can offer, then sure do a full code POLST. You can even write in there, I don’t want my family members changing this and add that to the orders. But I think you brought up conversation and conversations are critically important to this, and unfortunately a POLST form doesn’t have a way to record the conversation. So we certainly encourage all of whoever’s listening here, if you’re ever going to do a POLST form, please document your conversation and if at all possible, document it in the patient’s words and put it somewhere where it’s not going to be buried away in something from three years ago on an EHR.
Alex: I guess if I was to reconceptualize something, whether a POLST like thing, whatever, I don’t know what we’d call it. We call it POLST like form. It would probably have maybe three sections. It would have a CPR section and then it would have a healthcare proxy section. Who are you going to assign to make decisions for you when? Because POLST doesn’t, I believe, correct me if I’m wrong, you can’t assign a durable power of attorney for healthcare or healthcare proxy.
Karl: You can write it in. But only if the person already has one, you can say it, but if somebody orally designates that they want a particular family member, I’ll write it in there, but cross out the point it says if named in advance directive. But that’s because you have to have witnessing requirements. That’s part of why that not part of the form, right?
Eric: Statutory language in a durable power attorney form.
Alex: And that’s just annoying.
Eric: Just too much.
Alex: It’s too much. We don’t need all this legalese. It’s just an interference with good patient care. You should be able to name somebody and then write it down. And that should count. If I could write a DNR order as a doctor, I should be able to document who they said their surrogate was. So that’d be the second thing. And then the third thing would actually be an open paragraph about capturing the text of a goals of care discussion.
Eric: So you’re saying like the VA life sustained treatment form?
Alex: Similar. Well, the VA life sustained treatment, does that have surrogate designation?
Eric: It does. You write who the surrogate is. Again, you don’t designate because you need the advances directive to designate.
Alex: See, I want designation. I want designation.
Eric: That’s a complicated form then.
Alex: But I do like the idea of a paragraph rather than three check boxes.
Eric: Scott, he’s going to have to do a randomized control trial, right?
Alex: We can’t just do that?
Scott: Well, even on conceptual grounds, I mean, you know what I’ll say about RCTs. But even on conceptual grounds, I would say why is POLST the right mechanism for such documentation? And the reason I raised that question is because the innovation of POLST is that it is a legally, in theory, a legally binding order, or at least the intent is that it’s an legally binding order. And that feels really relevant to me because it really removes context from the decision making. So I’ve been a critical care doc, I don’t know, 20 years. I can on one hand count the patients I’ve cared for who didn’t want mechanical ventilation. If it was going to be for 48 hours to get them through a community acquired pneumonia. I can correspondingly count on one hand the number of patients I’ve cared for who said I want to be on mechanical ventilation at all costs, even if it means I will never come off. That context is really valuable and really critical to goal concordant care and anything that makes an order around the use or non-use of mechanical ventilation, legally binding inexorably detracts from that goal.
Karl: But one thing, Scott, is the people that you’re seeing, I mean, there’s a countless number of people who never made it to your ICU because they didn’t want that and it was documented on a form. I mean, maybe that’s why, maybe it’s not why, but the form helped them not get care that they didn’t want. Okay, you’re smiling, so you can’t really argue that point. But getting back to the-
Scott: No, I’m smiling because it may or may not have been the causative agent.
Karl: I agree. We don’t know, but it didn’t hurt, right? It helped them get goal concordant care if we believe that the conversation. But anyway, as far as your idea about having a conversation on there, one reason why the POLST is so kind of austere is because it’s for first responders, right? And they are very black and white. I mean, you cannot put nuance into them. I mean, they have enough trouble understanding it in the simple terms that it’s already written in. So that’s part of the reason behind it. By no means do we think it is the perfect tool, but we just think it’s a very valuable tool.
Eric: Which brings us to artificial nutrition. But we have podcasts on that too, so we’ll have a link to that podcast, we would dive into that. Abby, you were going to say something?
Abby: I was just going to follow up on what Karl mentioned. It is just that this was a document that was designed for first responders for emergent situations. And while the tool is very valuable as a conversation piece, it has value also in that end use situation. And a lot of times, especially here in Oregon, we do have the robust registry, but we do see a lot of paper forms. About 65% of the forms we get to the registry are handwritten. And so we know people are still tacking them on the refrigerators, and we don’t even have the ability to quantify the number of patients that don’t come into the ED because a paper form was seen on a refrigerator and EMS acted accordingly. We do have the information of both our emergent call center and our electronic methods to access those forms. But the point is that EMS is a big piece of this discussion and national going forward, National POLST’s Collaborative is making that definitely a priority because it is forgotten a bit in some states.
Eric: And Abby, you’re doing a lot of training with them too, even modules and stuff, right?
Abby: Yeah. Well, I do some training here in Oregon, but also I’m speaking at the N-A-E-M-S-P conference in January in Austin with an emergency physician from EAL, Amelia Byer. And we are targeting some of this high level outreach for EMS to make sure that it really gets on the map because we’re seeing that that’s a pain point for some of the POLST value where it’s just not being utilized where it could be.
Eric: Kelly, I’m going to go back to you around evidence-based too, because my understanding from the evidence is, and it sounds like from our discussion, nobody is arguing around section A, around CPR. A durable CPR order seems reasonable even if there’s not randomized control trial data on it. And it seems like… I see Scott, okay, Scott’s in agreement with that. See, what’s the song called again, no Hard Feelings. We all found Ground.
Scott: We’re all there,
Eric: Alex, that is not cue to start playing. We still have 10 minutes. The discrepancies even around discrepancies, it’s not about CPR, right? It’s not about the first section. It’s really about section B. Like in your study, if people get comfort care, they may still end up in the ICU or comfort focused care. It’s those issues. Is that right? And I think there was a discrepancy article, a qualitative study looking at discrepancies and why people decided, and one of the things was, I think it was a JAGS, I don’t remember, but what Scott said, oh, I didn’t realize when I was saying comfort focused care that it applied to a pneumonia that I may recover from. Kelly, thoughts on that?
Kelly: Yeah, no, definitely. So it’s interesting, so there are a few papers, I think Susan Hickman has published a couple looking at reasons for discrepancy between what’s on the POLST and care patients actually receive, particularly in the nursing home population. But the study that I mentioned earlier that Scott and I did with Susan Toll as well, where we found that 7% accession rate of POLST. Well, in that study there were 32 patients who had comfort measures only or treatment limitations on their POLST and who ended up getting some form of aggressive treatment. This is not published, it’s actually something we’re kind of in the process of writing it up to finish this study. But we decided to do a qualitative chart assessment to see what was the context in which these 32 patients received the aggressive medical treatment. And at least, again, this was single site at OHSU a couple years ago, but it was pretty fascinating to see over 90% of those patients came in with an acute surgical issue.
They were often patients with some sort of cancer, and they had either an acute cholecystitis or a cord compression, and they ended up needing an acute surgical issue. And so they were intubated in the context of the operating room to get this acute issue dealt with and then came out of it. And so it was interesting to put that into perspective. They technically met criteria for POLST discordant care, but going through a qualitative assessment of the notes, you could actually get a lot of rich data about the context and the decision making. A lot of patients ended up having… a lot of them died in the hospital. A lot of them ended up having functional limitations that made that if they came from home, they ended up going to a nursing facility or hospice. So they sort of had a step-down, not surprisingly, given the acute issue in the setting of their chronic illness.
But there was a lot in the chart about miscommunication. Like, if only I had known that I would never leave the hospital, I wouldn’t have wanted the surgery in the first place. Or to your point, one of the patients was documented saying, or the patient’s family member was like, oh, my mom thought comfort care meant she’d be comfortable during all the procedures. These sorts of just really sort of egregious miscommunications. So it’s really fascinating to see when you actually dive in and understand the context in which this discordant care happens, you can learn a lot from that too. And a lot of it centers around communication in that acute care setting.
Eric: Karl, Abby, any other thoughts on that?
Abby: Well, one of the things that you had mentioned was the conflicting orders. I think it was Bob Lee’s 2020 JAGS paper. Is that what you’re referring to?
Eric: I think so.
Abby: One of the things that I will say, based on that, they were looking at conflicting orders in the CPR and medical sections, and I think this is, I’m going to keep plugging the technology, y’all. This is where registries are so important because this is where we do the quality checks.
Eric: What states have registries, online registries?
Abby: There’s a handful of them, a handful of states that have them, but most do not.
Karl: We will soon. There’s money for it. And it’s in the works with the Coalition for Compassionate Care and EMSA, and we’ll see how…
I mean, if it’s not mandatory to upload the orders, then it’s going to be worthless. You don’t know that they’re the most up-to-date orders and so on. But we feel like it would be lovely to have a national registry if we could agree on at least a minimum data elements for it, because then it would be if you’re traveling in another state or something like that and you’ve got strong feelings about your treatment preferences, well, you can always get the bracelet or the tattoo I guess. But it would be lovely to have that.
Eric: I think [inaudible] Integrated with your EMR because otherwise it’s just another step. And then you’d have to look that up instead of just click on that button on Epic.
Abby: And that is absolutely the point is we’ve developed a DS standard, that’s an HL seven, that’s CDA, the clinical document architecture, standard. So that is exactly where things are going to go. We can have this EHR interoperable standard, but that maintains the high quality of the POLST form and these types of conflicting orders or incomplete forms. In Oregon, we see about 15% of the forms that we get that are handwritten, are either incomplete or have conflicting orders or can’t be read. We send those back and that’s how we keep the quality super high.
Eric: That’s fabulous. Well, we’re running out of time. I’m going to go to each one of you. Magic wand. If you have one magic wand around this issue, what would that be? Scott, I’m going to assume it’s going to be a randomized control trial, but I’m going to turn to you. What are you going to use that randomized control… No. What are you going to use that magic wand on?
Scott: It is maybe a subtle take on that, but I would say I think it’s really important that we get rid of any notion of quality reporting and quality standards that have anything to do with POLST or advanced directives unless or until there’s high quality evidence to support it. I feel that way about all quality reporting, but we get evaluated, we being hospitals, clinics, docs, et cetera, on all sorts of things. And if we’re evaluated on the wrong things, healthcare is going to go down the drain.
Eric: Thanks, Scott. Karl.
Karl: Oh, if I could wave a magic wand, I would alleviate the nursing assistant shortage in nursing homes. But since that doesn’t really have to do with this topic, I would like to, of course see quality randomized controlled study, but in the meantime, I don’t feel I need that. What I’d really like to see is that when POLST is utilized, it’s utilized correctly. It’s not being handed out like candy to everyone over 65, and that conversations that accompany those orders are documented.
Kelly: Yeah, I think putting on my hat as an intensivist, I would say I would love it if a patient does get to the hospital and they’re acutely critically ill, having time and communication skills every time to have those meaningful conversations at that moment in the current context of care to help guide treatment.
Eric: Wonderful. And Abby.
Abby: National Support and Championship for POLST, because the states that have great POLST programs and technology are really seeing the value, the states that don’t really need help in showing that value and getting funding and support. And so it would be really nice if that could be a national thing.
Eric: Well, I love this podcast because I love podcasts where we talk about some controversy, we dive into it, and we end up with no hard feelings.
Karl: I just want to mention the Message Lab, and I hope you guys will have Tony Bach and Marianne Grant on before too long, serious illness messaging.
Alex: We have that one on Message Lab. Yeah, we’ll put a link to that.
Karl: Yeah, I feel like a poser. I’m not even fellowship trained in anything, but I get to hang out with these cool kids from Vital Talk and Ariadney and AAHPM and HPCOC Tech, CAPSI, AMDA, the Conversation Project. And it’s wonderful messaging, and I can’t tell you how much of a research base there is for it other than qualitative stuff, but they’re doing great work. Or I guess I should say we’re doing great work, right, Abby? So anyway, just thought I’d throw that plug in there. I promised I would.
Alex: Well, that’s awesome. And you all are doing great work.
[singing] “When the sun hangs low in the west. And the line in my chest won’t be kept held at bay any longer. When the jealousy fades away. And it’s ash and dust for casual lust. And it’s just hallelujah. And love in thoughts and love in the words. Love in the songs they sing in the church. And no hard feelings.”
Eric: Kelly, Karl, Scott and Abby, thanks for joining us on this podcast.
Abby: Thanks so much.
Scott: Great job as always guys.
Kelly: Thanks for having us.
Eric: And thank you to all of our listeners for your continued support.