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Advance Care Planning is Wrong: Podcast with Sean Morrison


Sean Morrison dropped a bomb.  

It's a perspective I've heard before from outside of palliative care, most clearly by bioethicists Angie Fagerlin and Carl Schnieder in their landmark article Enough: The Failure of the Living Will.  

But Sean Morrison, Director of the National Palliative Care Research Center and Chair of the Department of Geriatrics and Palliative Medicine at Mt. Sinai, former President of the American Academy of Hospice and Palliative Medicine, is about as inside palliative care as one can get.  

Sean argues in his Journal of Palliative Medicine piece that we should stop putting resources into making advance care planning and advance directives work.  For decades, we have tried and tried, pouring $300 million dollars into research, untold intellectual capitol, at the expense of those resources going toward other areas of need such as disparities in access and outcomes for people with serious illness.  And what do we have to show for it?  1660 studies and 80 systematic reviews providing weak low quality evidence that advance care planning and advance directives impact outcomes.  

Sean likens this to his family's efforts to fix their fundamentally flawed Ford Pinto, an analogy we take to new heights in this week's podcast.  We challenge Sean about his perspective in the podcast, as I'm sure many of you are eager to do.  

We love it when people write perspectives or do research that challenges accepted geriatrics or palliative care practice/dogma.  This article should force us to think deeply and do some serious reflection about our clinical and research priorities, and the extent to which advance care planning and advance directives should be ranked highly among them.

And, of course, great song choice: Won't be Fooled Again by the WHO. If you watch the Youtube video to the end, you get to see me do my best Pete Townshend impression.

Enjoy!

-Alex Smith @AlexSmithMD


  


You can also find us on Youtube!

 

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TRANSCRIPT

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

Alex: This is Alex Smith.

Eric: And Alex, after a long summer break, we're getting back to the thick of things. We have two guests with us, both of them are recurring.

Alex: Both of them are recurring. Anne Kelly is back with us. She's a recurring co-host and palliative care social worker, welcome back.

Anne: Hi guys. Nice to see you.

Eric: And the GeriPal intro-er so that's the voice that you hear at the beginning of every GeriPal Podcast - it's Anne Kelly's voice.

Alex: And we have Sean Morrison, who is a repeat guest to this podcast who is the chair of the Department of Geriatrics and Palliative Care at Mount Sinai and also the director of the National Palliative Care Research Center. Did I get all that right Sean?

Sean: You got all that right, Alex. It's good to see you guys again.

Alex: Good to see you.

Eric: And Sean, we're going to be talking about a recent JPM article, Journal and Palliative Medicine article titled Advance Directives/Care Planning: Clear, Simple and Wrong.

Alex: Wrong!

Eric: A lot of controversy there.

Eric: But before we get into our discussion, we ask for a song request. Do you have a song request for Alex?

Sean: I do have a song request for Alex. Alex, I would love to hear The Who's - Won't Get Fooled Again.

Alex: I love this song. So I wasn't a fan of The Who, growing up, but I had so much fun listening to this song on YouTube, listening to Pete Townshend play it in his 60s and at age 70 on YouTube, there's a recording of him playing acoustically. I shared it with my son who's a budding guitarist. And wow I have to say, I think Pete Townshend has the best right hand in all of rock history maybe. So thank you for choosing this. I do not have the best right hand, but we'll see what happens.

Alex: (singing).

Alex: Well, there's my hack version.

Sean: Oh, it was brilliant, Alex. Absolutely brilliant.

Eric: We usually ask the person doing the request, why did you pick the song? But we won't get fooled again is a pretty good indication of the topic at hand. And I'm going to just start off with a quote from your JPM article. The history of advance directives, advance care planning reminds me of my family's 1975 Ford Pinto, a car with a fundamentally flawed design yet whose every broken part we do to fully repair per five years until it was finally and mercifully sold for parts. Why do we keep waiting for advance directives, advance care planning to work? Wow. First of all, you had a Ford Pinto, and you didn't blow off in it.

Sean: Yeah, the gas tank didn't blow up at all. It just died eventually, but yes, we did have a Ford Pinto, embarrassingly enough.

Eric: Okay. So let's talk about advance directives and advance care planning. First of all, I see a lot of lumpers and splitters. Are we going to combine both advance directive and advance care planning into like this stuff just doesn't work? Or you focused one or the other?

Sean: Yeah. So that I avoid the critiques that I get, that they're not the same thing and one has evolved from the other, and we're not going to talk about advance directives, why don't we talk about one and then the other. I think this comes back to that analogy that you read, Eric, which when you read, it sounds a lot more harsh than when I wrote it on the page. But if we go back and I've got enough gray hair that I can go back this far, but if we go back and so the '70s and we really started thinking about what was a major problem in healthcare. And one was that people were receiving treatments at the end of life when they couldn't make decisions for themselves that appeared not to be consistent with their wishes.

Sean: And there was this great idea that, well, if we just write down what would we want when we can't make decisions that would prevent the problem and the living will or the advance directive was born. And the problem was that it's really hard to predict the future. Even if you can, you may not be the same person in that future. And it's really impossible to outline every, as you guys know every scenario that you might want. And even if you can, I mean, this big takes me back 25 years, advance directors get lost, they get misplaced, they don't get in the medical record. That was my first general article, just looking at how advance directives never actually got where they wanted to go. So we set a high, we have a problem, we need to fix hence the Pinto analogy.

Sean: And the first fix was to say, okay, perhaps rather than just having an advance directive, what's a point a surrogate who can then read the advance directive and follow wishes. And the healthcare proxy was born and we don't have to go through the decades of research that demonstrated that, that in itself was problematic, including the fact that most healthcare proxies never knew that they were designated as a surrogate. Which brings us to the next phase, which was advance care planning, which was, well, if we can't actually predict exactly the situation, perhaps we can have a series of conversations about hypothetical or perhaps even possible treatment decisions in the future. So I can understand how those treatments should be made and what decisions you would like me to do. That seemed like a reasonable fix as well, except for the fact that all of the empirical data that has come out, looking at that process has found that it's ineffectual.

Sean: And whereas there is an argument that could be, well, perhaps we need to look further in advance and perhaps it's having something good is happening despite the fact that we're not seeing goal-concordant care, which was the objective of advance care planning. Perhaps it's still good. And my argument to that is perhaps, yet we have war literature and empirical evidence around advance directives and advance care planning. Then we have it almost any other area to palliative care. And we can't even seem to find a hit that the needle has bunched. And this has consequences because every dollar, every hour that goes into advance care planning research means that it doesn't go into something else that's important because it is truly in some respects, a zero sum game. There's a fixed pot of NIH dollars, there's a fixed palliative care research workforce. There's a fixed communication research workforce.

Sean: And my feeling and I've come to this a long period of time. And this is from somebody who spent first decade of his career, doing research in this area is that it's just quite simply not fair to our patients and our families to continue to try and get this car to run when there are so many other important issues. And let's seriously close this off and think about what are other core communication areas of research that need to happen for example. I'm sorry. So let me just stop there. It's a long-winded answer your question.

Eric: No, that was great. I'm wondering if we can go back to kind of, you said that the literature around this is largely negative, there's been some positive studies too out there. It's kind of, again, I am not an expert, maybe Alex knows more, but you certainly are Sean. It's kind of a mixed bag potentially because of who gets studied, how early on there they get studied, what the intervention is, are we talking about POLST? Are we talking about advance directives? Are we talking about things like, just having advance care planning discussions. How would you summarize our current state of the literature?

Sean: Yeah, it's a very good questionnaire, Eric and I would summarize it in this way. The first is that a couple of years ago there was a systematic review of systematic reviews that really sort of targeted all of those, many of the areas that you said. And when you really break it down in that regard, there are... what was it? 80 systematic reviews, systematic reviews of advance care planning and as you said, yeah, there were a couple of studies in there and everybody cites them on. But when you look at the well done studies and I point to the two that were done within the past two years, Susan Mitchell's work, pragmatic trial in nursing homes and the recent Australian study in cancer patients, there's nothing there.

Sean: And it's so interesting to me because there was always an explanation. For the Mitchell study it was because, well, you know what? The intervention worked, but the nursing homes just didn't adapt correctly. Well, hello, if they're not going to adapt it, how can the intervention work? I found a great article and this is relevant that talked about the strong evidence base for advance care planning and cited a paper that Alex wrote. I went back to look at the paper that Alex wrote on because I thought, geez, did I miss something? I mean Alex is a brilliant researcher.

Eric: Let's see if Alex remembers what he wrote.

Sean: What it was, was it was a study with Rebecca Sudore around PREPARE. It was about acceptability. I think it was about acceptability, am I right Alex?

Alex: I don't know. I wrote a lot of things with Rebecca. [laughter]

Sean: Alex, you're absolutely brilliant. I get it. But your personal opinion, I'm not sure is strong evidence base. I think that's the challenge is that when you look through over 1500 studies, there are a few to pop out that everybody says, aha, honestly, they work. And yet when you look at the really well done studies that have defined outcomes, that don't have contamination and are RCTs for example, there's nothing there. They're just you have to find, work really, really hard to find a positive result. My feeling is that if you have to look that hard, is this something we should really be continuing to invest in and is this something we should be really focusing on given all the other needs we have.

Eric: I guess one question is what does the alternative world look like? Well, you mean, do we go back to the 1970s where the only option is the default option where everybody gets everything that we can to prolong someone's life, because nobody has done any advance thinking about code status or intubation, or man, I have advanced cancer, do I want all of these default medicine treatments? Is that what we should be looking as far as the alternative?

Sean: Now you're going back to my Pinto Eric, or my dad's Pinto, which was - the alternative was something a lot more expensive or new or different. It might have been at that time, buying a Honda was easier to try and fix the Pinto. But no, in all seriousness, I think what it means is, and in some ways this is why I chose the title of the editorial. Communication is really hard, sitting down with somebody with serious illness or their family members and understanding their values and goals and helping them, guiding through complex decisions and outlining what are the likely outcomes? What's the prognosis for example? What do we do if things don't go the way we want them to go? That's tough. That's huge, and that's the gap that advance care planning is trying to fill.

Sean: I think what we need to start to articulate is that that is really tough. That that's knowledge and skill that isn't something that can be trained up very, very quickly. It's not something that anybody can sit down and talk about. And in many respects, it's not something that we can predict. So what's the alternative? I think the alternative is what, in many respects, you folks have been working out at UCSF at and Daren Heyland in Canada has been working at is how do we help patients who have capacity and how do we help families make better decisions when the decisions need to be made? I don't know the answer or how that happens. I do know that that's an empiric question. I think that one of the things that we do need to do is move away from the fact that says, okay, we should be doing this in advance. We should be doing this well before this becomes real.

Sean: We should prepare way ahead of time because what we have the research is that that doesn't work. So maybe we should be focused on what do, for example, we'll take people without decisional capacity because that's the advance care planning, advance directive population. What does surrogates need to know right now to help them make a decision? What's the information that will help guide them? What do they need to know about their family member? This idea, substituted judgment. How many times have we heard, I know what my dad would want and I'm not going to do that? So I think we need a different paradigm for how we begin to make real time decisions for people with serious illness. Whether that be about treatment choices, moving forward, whether that be crisis decisions.

Sean: For example, in COVID, do I intubate somebody or not. What we found during COVID, and again, I say this as anecdotal experience only. So many times when we had goals of care discussion with somebody who had done a medical order for life sustaining treatment. And we say for example, your prior wishes were X and they say, oh no, no, no. Now that you've explained it to me, I want Y and similar with family members. I think that we need a better way of having those conversations in real time. And again, do I know what that looks like? I don't, but I think that that's an impure question we can answer. And that may be where we should be focusing some of our communication research rather than trying to do all this in advance. Advances for us, advance means that it's easier for us to make decisions in a crisis. That we have a roadmap, we have a plan, we know what to do and therefore we don't have to make any decisions. I'm not sure of what patients and families want.

Anne: Do you feel like the advance is only for us and not for family members who may be called upon one day sort of unwittingly?

Sean: It's a very interesting question and one that a lot of people have asked. Which is, does having something advance take the burden off proxy-maker? And I suspect it does in some circumstances, and I suspect in some circumstances might make the decision easier. That being said, I would be really interested in the study that compares that to a healthcare professional who sits down and has a very good goals of care in the moment discussion and guide somebody through a decision that couldn't be predicted in advance and what the outcomes on that family are. My guess quite honestly is that yeah, the advance directive may have made the decision making a little easier, but I suspect that if you compare that to what is a very good in the moment, goals of care discussion, the impact will be a lot more favorable to that family member.

Sean: And I get it in, I think there perhaps are some circumstances when that happens, but they're not the majority. And certainly the data that we have when you look at thousands of patients, there's not a big impact on family member outcome because that advance directive was present. Obviously it does impact some, but if we're thinking about this as a population and we're going to spend money as a population, we should be getting the majority, not the exception. And we do remember the exception.

Eric: Yeah. I mean, I think my head is trying to grapple with this because there's so many different aspects that I think I both agree with you and disagree with you at the exact same time. So I'm not sure like this is, it's a big shift. And I think if we can just potentially break it down, like I feel like one important aspect of advance directive is assigning somebody as your surrogate, your proxy in the future, somebody that you trust. And while I think for a lot of individuals, it may not matter, but there are certain vulnerable populations where they have particular people that don't default in that hierarchy. They may be not non illegally married. They may not be able to marry in their state where that part of the advance directive may become very important, assigning somebody as your healthcare agent.

Sean: I would not disagree with you. But I would say healthcare proxy, surrogate decision maker been there, done that, we know that that's a good thing. We don't need any more research. We don't need anything to say, we have a power of attorney, financial power of attorney. We thought that's a good thing. We don't need to research it.

Eric: All right. So it's not that we shouldn't do them. It's we don't have to continually research whether or not that...

Sean: Right. I think the things that we know are helpful, are helpful. As you said, for certain vulnerable populations, designating a healthcare proxy or durable power of attorney for healthcare is a good thing. For some populations who or some families not populations, for some families who make decisions collectively as a family can actually be a really bad thing because it elevates one person above everybody else. And yes, you can say, "Well, my healthcare proxy names my entire family, so to make collective decisions." So yeah, I get that, it's important but for some, it may not be.

Eric: Yeah. I'm just also thinking back to, when we were doing tele-palliative care consults to New York, a lot of times that there was no advance directive or proxy, which, like you said that that's something that we should keep in mind that we were bringing together as much of the family, as we could to have these really difficult conversations. When we, sometimes they've never had these discussions, sometimes they were very explicit and they did like, "Oh yeah, she would want everything that you can to keep her alive no matter what." And then we're trying to negotiate with a lot of different family members. I guess my second question is moving from the advance directive to advance care planning or advance care planning.

Eric: There also seems like when I'm having these discussions with family members and I have granted a palliative care note, somebody who is explicitly trained on how to have these discussions and they talk about values goals, like what's important to them, man, that certainly feels helpful in the time when we're actually talking to the surrogate with that incapacitated patient, like in the ICU or about to go to the ICU.

Sean: And Eric, I wouldn't disagree with you, but you're having that conversation right then. You're not having that conversation five years ago when that ICU situation was hypothetical.

Eric: But I am having a conversation with that patient let's say, or the team had a conversation six months ago with a patient who now has incapacitated, had capacity back then, and that they've actually talked about in a nice, I'm just thinking back to our like our outpatient palliative care team when they're having these discussions, beautifully written about kind of what they value in their life. What's important to them may not specifically talk about the exact interventions that they would, or wouldn't want like ECMO or pressors and all of this. But it serves as a guide for us in the quotes that they have in their notes certainly actually helps kind of us frame this, the family members. And again, this is all, I don't have any exact evidence behind it, but it feels like that often moves us forward a lot more than having absolutely nothing.

Sean: And I think this is the challenger because I can't argue with you or disagree with you and I wouldn't.

Eric: You can. [laughter]

Sean: You're a lot smarter than I am. I'm not going to pick that one up. No way. Let me push back a little bit and again, stepping back, not so much from an individual situation, but taking it from a public health or population standpoint. Some of this I think is semantics. How far in advance is advance? When your palliative care team is having that conversation with that particular patient, obviously something pretty bad is happening or they wouldn't be seeing the palliative care team, so it's real. The way I think about my lovely wife may kill me for saying this, but when you're having that conversation, death has moved from the hypothetical to the possible, to probably the probable.

Sean: Even though palliative care is not about anything like that. So I would say that that's real. I would also say to you that your palliative care team or your palliative care member is very different and trained very differently than an advance care planning counselor, a general internist and oncologist. Because the information that you described in that note was not gotten through a couple of key words, wasn't gotten through a checklist. It was gotten because that healthcare professional had sophisticated knowledge about that person's likely path forward, knew what specific questions to ask. And as importantly, what were the followup questions based on that answer. And they do this every single day, day in and day out.

Sean: I think that is very different than what we talk about as a public health advance care planning, which is a relatively non sophisticated approach to decision making in people who range from the worried well to the actively dying. And if you were to tell me that my intervention was going to do sophisticated communication skills training with every health care worker. So they have these discussions, I'm behind John now, but that's not what the ACP literature is.

Eric: Yeah. That's a good point because when I think about... so within the VA system, we have these life sustaining treatment notes and Anne you can back me up or disagree, but certainly feels like the vast majority of them, they don't have the information that I want, which is the discussion part. It's mainly about the outcome and what they chose part, which is the issue with advance directives is, man I feel like oftentimes it's not helpful because it's so focused on the outcome rather than the process.

Sean: And Eric again, I'm older than you are. In fact, I remember when he was a resident here, but that same point was being made back in 1995 when I first published on advance directives and 30 years later after all of that research, we're still making that point and we still haven't moved forward.

Eric: That's because we didn't had podcasts back then.

Sean: Clearly. [laughter]

Alex: That's right, not enough dissemination. [laughter]

Alex: Anne, it looks like you were going to jump in here.

Anne: Well, I was just thinking about, certainly I am not older than Eric and I haven't been doing this as many years. And at the same time, yes, the notes and the substantive conversations that are documented through like a palliative care physician are incredibly useful. I would say that that doesn't mean that the primary palliative care interventions, that primary care physicians and social workers and others use, aren't also useful in those crunch time situations when we're having those family meetings in the ICU. When someone is incapacitated and their family members are trying to gather all the data they can, because being in the position to try to make a decision for someone else, I know I'm preaching, the choir is profoundly distressing. And if there's any data out there to help make that process feel informed, people usually want it, I think anecdotally. So I guess I'm wondering, okay, maybe it's not always as documented or conducted in this really expertly trained way, but does that, we throw the baby out with the bath water, that all those conversations aren't useful.

Sean: It's so interesting because I'm responding to the letters to the editor and somebody just made that I got away water and somebody just made that point. So let me respond to that one and in a couple of words. I think what is so difficult about advance care planning is a fundamental, we believe it should work. That at a fundamental level, we have such faith in it that it needs to work. And what you said Anne, that we can all remember distinctly situations where it was helpful and yet, and this is the big issue. And yet when we actually look at good research, and not just looks at the situations where we've found that we think it's a good thing. We actually look and unfortunately there's a lot of it. It's not like it's one or two studies. It was a lot. There was nothing in that that says that it's beneficial for the majority of people, or even when I use the S word, really a significant minority.

Sean: So that comes up against this fundamental belief that we have that says, "Well, I can't be wrong because this is, it makes so much sense. This makes so much sense. It just has to be right." And yet every time we do, we study it, we can't make that. So what happens and what's really... and again, this is the last time I talked about my age, but what I really find interesting is that each new generation of researchers wants to advance care planning research right off the bat, because it makes so much sense and they just, we could just do the right study. We'll be able to demonstrate it that it's worked. And I've now seen this happen one, two, three, four times. And in fact, I have a medical student this week who wants to meet with me to do ACP research because he knows how to make it work.

Sean: So I come back to you and say, yes, it's the same thing I said to Eric. Yeah. There are going to be individual times and certain circumstances where this does work. And yet for the majority of people in the majority of situations, it doesn't. And if this was something we were spending a little bit of time, a little bit of money, a little advertising, sure, but we're not. We're spending still a lot of money. I can't remember what I came up with in my article, but tens of millions of dollars I have to look, we spent funding this stuff.

Eric: More than 300 million - about a million a year.

Sean: Yeah. About a million year, think of what we could have done to the patients that you care for with that type of money. Think how much money has gone into programs like respecting choices over the years. And if we put that money into, for example, a public relations campaign around palliative care, so that every seriously old person in their family knew what palliative care was. I mean, these are real choices, we're making. These are real choice.

Alex: I just wanted to say that I love these articles, that challenge accepted geriatrics, palliative care, bioethics, dogma and advance care planning is certainly a central tenant, central component of all of those fields. And your article reminds me of, and it seems like it's a successor to a series of articles that have lamented the state of it, advance care planning. And the focus put on advance directives, I'm remembering in particular, an article that Susan Block, shared with me back in 2005 was titled enough failure of the living will by Angie Fingerling and Carl Schneider, bioethicists.

Alex: I'll just quote from that, "In social policy as in medicine, plausible notions can turn out to be bad ideas. Bad ideas should be renounced. Bloodletting once seemed plausible, but when it demonstrably failed, the course of wisdom was to abandon it, not to insist on its virtues and to scrounge for alternative justifications for it. Living wills were praised and peddled before they were fully developed, much less studied. They have now failed repeated tests to practice. It is time to say enough." And in this article they were reeling against the living wills in particular and the patient's self determination act, which as a matter of policy mandates that all hospitals must ask patients if they have completed an advance directive or provide them with advance directive materials so they can complete it themselves.

Alex: Huge amount of policy effort gone into all hospitals doing this for years. This article came out in 2004. So it's not just research, it's also the policy and the practice of it. So I guess my question for you is, as a matter of research, I hear you, you feel like this is not an area that we should prioritize. We need to prioritize other things that are more urgent. We've done enough in this area. As a matter of policy, what do you think we should be doing as a nation regarding advance care planning, including advance directives healthcare proxies and efforts to fund say communication around plans and preferences for end of life care as funded by Medicare in the annual wellness visit.

Sean: Yeah. So three answers to that question, Alex, two very straightforward and one longer. The first straightforward is, everybody who wants to should have a health care proxy. I have a healthcare proxy. My instructions are, do whatever is going to make your life better. That's it, straight forward. Number two, every stage could have a family decision act so that when we need to make decisions for somebody with a capacity, there is somebody who can step up and do it. The third answer though, is more complicated. I think this is where I think advance care planning has such why people are so enthralled with it because the alternative is so difficult. Because if the holy grail is goal-concordant care, which is the purpose in many respects of advance care planning, right?

Sean: If the holy grail is goal-concordant care that will never happen, ever happen until we fix the finances of the health system. Until the profit motive changes, until at 3:00 AM in the morning, somebody is on the other end of the phone when the patient's wife calls and says, "My husband can't breathe." And can say, "Okay, this is what we need to do and this is what we're going to do," rather than call 911. He wouldn't want to go to the hospital. I don't have anything else to offer. He needs to go to the emergency department. Until we can fix that, we're never going to get to goal-concordant care. Advance care planning is the band-aid that continuously falls off because we actually can't stitch up the wound that is our healthcare system, and that's hard. I think that's why we're really frightened about doing it.

Sean: Communication training is hard. We'd like to be able to say, check these boxes off and you could do it, but it's hard. I think that the attraction about advance care planning is the possibility that we could make it work. And we don't have to tackle what are the fundamental problems in ensuring equitable access and goal-concordant care in this country. And that's where I would put my money. So where are we going to focus - I would not focus on advance care planning, but focus on those issues.

Eric: So the real Pinto is actually US healthcare system and the carburetor that keeps on breaking down as the advance care planning component. [laughter]

Sean: Brilliant. That is absolutely brilliant.

Alex: Let's see how far we can take this analogy. [laughter]

Eric: You can try to redefine a new carburetor for that pinto but it's still a pinto.

Sean: Yeah, that is absolutely brilliant.

Alex: Okay. So here's another, here's my last question. What do you say to critics who may say, okay, we're going to go back before any of us were born into the Flexner Report, which was like, I don't know, 1910, something like that. Which was a report that really was a massive critique of any kind of medicine that was not allopathic medicine. And really what it represented was circling of the wagons around a profession and a profession protecting itself. So is there some sense in which your argument could be viewed as we shouldn't be investing in advance care planning, we should be investing in the profession of palliative medicine and that only we have the tools and skills to address this complex communication. And only when we are funded by the health system, will we be able to achieve our goals of goal-concordant care?

Sean: God, I hope that's not what I'm saying. Yeah. No, I mean, we will never have a palliative care workforce to take care of everybody and we shouldn't. However, what I would argue back to Alex and coming back to the Flexner Report is everything in our current healthcare system, our structures, our payment systems, our specialist driven care was Medicare, is all developed to meet the needs of a population that no longer exists. When all of this infrastructure was created, people developed a serious illness and they died. It's fascinating when you look at time from diagnosis to death, cancer, COPD, heart disease, stroke, it stays virtually unchanged from the '40s and '50s all the way through until the early '90s. That time from diagnosis to death really doesn't fudge. So we built up this entire healthcare system that can't meet the needs of a population that is now living with multiple chronic conditions, serious illness.

Sean: And there's a tremendous mismatch, and it's not just the physician mismatch. It's the difference between medical care and health care. We've got a healthcare mismatch. What I would argue is we need a new Flexner Report, which is not driven at protecting the specialty, but much more driven at what does the population of people living with serious illness, who we as palliative care, clinicians care for, we as geriatricians care for, we as primary docs care for, and what is the system that's going to support that care that we provide because our population is different. And the diseases we see are different and the interactions that those diseases are different, the same way that the diseases we saw before public health and infectious control came into practice. We made that adjustment. I think now's the time that we need to make a similar adjustment so that our healthcare system is a better match for the population it's caring for. It was a great match for the population in 1960s. It was a pretty good match in the '50s. It was not so bad in the '70s. It's pretty lousy now.

Alex: All right. I got one question. I'm guessing you're going to have some author letters like letters to you on this article from the POLST folks because isn't there some data around POLST and goal-concordant care. I'm just thinking about like advance care planning, how advance, like it should be people with a very serious illness, generally limited life expectancy that they're dealing with their current situation. And they're thinking about kind of what are their goals and kind of what treatments would they want. Versus somebody like me, I actually don't have an advance directive because the default is my wife we've talked about it, but I actually don't see a need for me to do advance directive. But if I got, I mean, in that situation, I'm dealing with a serious illness. I fill out a POLST. Is that also part of this?

Sean: Yeah, I mean, I think so. I think the challenge with POLST and the studies that are starting to come out around this is that POLST is filled by physicians or other healthcare professionals who can issue medical orders, medical orders for license stating treatment. And it's a way of getting around the hard conversation. And so, yes, there are some studies that show that this goal-concordant care, but not strong data. There are equally studies that would scare me more is people who have a POLST who have no idea that they failed to do, have no idea what's on it or would disagree with what's on it. I think the challenge with POLST or MOLST or eMOLST is we have absolutely no understanding of the quality of the conversation that went into it.

Sean: We have good data, some from you guys that demonstrates that we know these conversations are not ideally what we would want to be from the average professional. And now these are medical words, not just the suggestion. And for a medical order that says, I don't want to be in the ICU, or I don't want to be on a ventilator in the midst of a COVID epidemic where I am potentially facing a shortage of ICU beds and a shortage of ventilators and somebody who needs me in the next bed. You don't think I'm going to just take that and run with it?

Eric: Well, I think I'm still trying to grapple with this. I love like Alex said, just and kind of the devil's advocate position here, thinking about kind of, does this work? Where should our resources be put out? I think part of how I also think about it is man, we all know our system's pretty screwed up. If there was an easy fix for that probably would have figured out how to do it. I also don't see a fix for the Pinto. So we're stuck with all these band-aids, like advance care planning and advance directives, recognizing that we're not going to get a new Pinto for awhile, which is our healthcare system,

Sean: But I would disagree with that Eric because I think our responsibility is to really push for that new system. And it may be small steps on that we're not helping our patients and our families by continuing something that we know really doesn't work and doesn't work for most of them. So let's tackle the big problem. Somebody said to me back when I first got my PDI Searles Award, "Palliative care is never going to take off, it's too big a problem." Well, worked pretty well and it disseminated. I don't think the problem is too big to fix. We have to fix it if we don't fix it, by the time the baby boomers hit Medicare we're in big big trouble, so we've got to fix it. And I don't think it's too hard to fix. We just have to focus.

Eric: Yeah. We'll get fooled again.

Sean: We will.

Eric: Hi, I got Alex, I'm foreshadowing to your song right now.

Alex: There's always some attempted pun.

Anne: I haven't been here in a while, but I see some things haven't changed. [laughter]

Alex: Somethings haven't changed.

Sean: Well, I know as a regular watcher, I can tell you they don't. [laughter]

Alex: Yeah. And the lyrics to this song are just prescient. There's nothing in the streets looks any different to me. The slogans are replaced by the by and the parting on the left are now the parting on the right and the beards have all grown longer overnight. I'll tip my hat to the new constitution, take about for the new revolution. Smile and grin at the change all around, take up my guitar and play just like yesterday. We won't get fooled again. Sean, thank you so much for joining us.

Eric: Yeah.

Sean: It is always a pleasure to talk to you guys. You were very gentle with me and I really appreciate it. It was really a pleasure to meet you also, Anne.

Anne: Nice to meet you, Sean.

Eric: Pick up the guitar the Alex. Let's hear it.

Alex: All right. We'll pick up the guitar and play. Here we go. (singing).

Sean: You're the best, Alex.

Alex: I had to throw a little Pete Townshen.

Eric: Sean, a very big thank you for joining us, really appreciate it and always a pleasure to have you on too. To all of our listeners, thank you for supporting the GeriPal Podcast. I just looked at our stats and we've had half a million plays since our inception, half of those were in the last year. So a big thank you to everybody. If you take a second, please continue to support us by rating us on your favorite podcasting app or tweeting us one of your favorite episodes. So again, thank you to everybody and a big thank you to Archstone Foundation for your continued support.

Sean: Thanks guys. Stay safe.

Alex: Thanks.

Eric: Bye everybody.

Alex: Bye.



Comments

Anonymous said…
Advance care planning would have been very helpful in the most contentious legal cases regarding life-prolonging care: Karen Ann Quinlan, Nancy Cruzan, and Terry Schiavo – young and previously healthy folks who endured catastrophic medical events. The US Supreme Court ruled that there must be clear and convincing evidence that Nancy Cruzan would not have wanted her life prolonged by artificial means when she lived for years in a persistent vegetative state post head trauma. Her case spawned the use of advance directives. Just think of the hell that those families endured. If the studies aren't showing what you wish to find on ACP, perhaps you should pull in some elder law attorneys for their perspectives. What the guest speaker is advocating is getting rid of ACP without a viable alternative.
kathy kastner said…
As a patient-partner/advisor on several 'end of life' planning initiatives (in Canada - so know Darren Heyland and U.S -including PCORI initiative)and, having met/written about Rebecca Sudore I cannot resist adding my 2cents. Seeing things in a similar light to Sean i.e. current MOLST, POLST ACP, AD are neither effective nor even guaranteed to be respected, I tried out a different approach. Pay attention to what brings joy, comfort, pleasure: often the smallest of the small things like my father-in-law: his hearing aids critical to his well-being. My focus became: make sure these 'knowables' are in place. I tested this theory with a whiteboard - first at health conferences spanning Palliative and Public Health, Health Literacy, Shared Decision-Making, and then took the Whiteboard wherever I went - asking people to fill in the blank: I want to _____ until I die. It was a revelation - for me, and for those who had to really think about the small 'important' stuff. I'm puffed with pride to say results of a thematic analysis recently published https://doi.org/10.1007/s40271-020-00435-6