One of my favorite Piece of My Mind essays in JAMA is by Rebecca Sudore, titled, “Can We Agree to Disagree?”
And today our guests agree to disagree.
And yet, and yet…
They also agree across a whole range of issues, some of which surprised us.
This is the latest in our series of podcasts on concerns about, and potential of advance care planning. If you’re new to this discussion, don’t start with this podcast! Start by reading this article by Sean Morrison, Diane Meier, and Bob Arnold in JAMA, and this response from Rebecca Sudore, Susan Hickman, and Anne Walling. Then listen to these prior podcasts with Sean Morrison and Rebecca Sudore about this issue, and we recently discussed differences between Advance Care Planning and Serious Illness Communication with Juliet Jacobsen and Rachelle Bernacki.
On today’s podcast we ask our guests about areas in which there might be agreement or disagreement, including:
- The Best New York style bagels are made in California.
- Assigning a surrogate decision maker is important for everyone, including those who don’t have serious illness.
- Where does POLST fit in with this debate?
- All decisions are made in advance, the question that we are debating is how far in advance and what to call it
- Completion of advance directives and billing codes for advance care planning as quality metrics
Among other topics. I’m heartened that we could have this discussion as a field, as it shows that we’ve grown to the point where we can agree to disagree respectfully with each other.
We can work it out!
Links to a few couple items mentioned on the podcast:
Eric: Welcome to the GeriPal Podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, you have a lot of people to introduce today. We’re going to be talking about advance care planning, serious illness communication, what’s what, what’s up with both, is either of them good. We have a ton of questions and that’s why we’ve invited quite a few people on this show. Who do we have with us today?
Alex: We are delighted to welcome to the GeriPal podcast, Susan Hickman, who is professor at the Indiana University schools of nursing and medicine, and is director of the IU Center for Aging Research at the Regenstrief Institute. Welcome to the GeriPal podcast Susan.
Susan: Thanks so much, Alex.
Alex: And we have returning, Bob Arnold, who is a palliative care doctor at the University of Pittsburgh. Welcome back, Bob.
Bob: Thank you.
Alex: Also returning Rebecca Sudore, who is professor of medicine at the UCSF in the division of geriatrics, and is a geriatric and palliative care doctor. Welcome back, Rebecca.
Rebecca: Thanks for having us.
Alex: And also welcoming back Sean Morrison, who is quote, one of Bob’s followers, unquote, as well as Professor and Chair of Geriatrics and Palliative Care at the Mount Sinai School of Medicine. Welcome back, Sean.
Sean: Nice to be here, gentlemen.
Eric: We’ve got a lot talk to about out around advance care planning and serious illness communication. Done podcasts on it before. But before we get into that subject, Susan, I think you have a song request for us.
Susan: I do, Eric. I would like to request, We Can Work It Out, by The Beatles.
Eric: You want to tell us a little bit about why you picked this song?
Susan: Absolutely. I think it’s a really appropriate song. It’s a call for discussion and there’s a lot of optimism in it. And I think there are a few lines that I think are sort of especially meaningful, including that there’s not so much time in life for fussing and fighting. So focus on collaboration and moving forward.
Alex: That’s great. Terrific song choice, Susan. Here we go.
Eric: You can always tell how much Alex likes a song by how long his intro part is to that song.[laughter]
Alex: That was a great song. That was a lot of fun. Thanks to my younger son, Ren, for helping me work out the triplets in the middle and the rhythm there. Thank you Ren.
Eric: So yeah, we’ve had Sean on our podcast to talk about advance care planning and Rebecca to talk about it. James Tulsky came on about this. And we’ll have links to all of those podcasts. For this podcast, because there’s a quite a bit of controversy right now around the value of advance care planning. Should we be thinking about it differently, including serious illness communication, Alex and I have come up with 13, 14 questions, we’ll see how many questions we get through, about this particular issue that we’re going to direct a particular people. However, because we want to ensure that there is a lively discussion, debate, really encourage everybody’s just jump in with their thoughts. I think Alex is going to start us off with the very first question.
Alex: All right. So this one is directed at Sean. This comes from a New York Times headline from a few months back. And the statement I’m going to ask you, do you agree, do you disagree or do you sort of agree? And here’s the statement. The headline, The Best New York Style Bagels Are Made in California?
Sean: Oh, disagree. [laughter]
Alex: It’s in the front page of the New York Times! It’s got to be true! [laughter]
Sean: You know what, every once in a while, the Times has to issue a correction. And this is one of those times where a correction was due.
Alex: And I think three out of four of those bagel places were in the Bay Area, by the way.
Eric: Would anybody here like to disagree with Sean on this, or is this a source of agreement? Can we all agree New York bagels are the best bagels and the New York Times got it wrong on this one?
Rebecca: I think so, because I haven’t found these bagel places in San Francisco that are as good.
Alex: I’ve heard the lines got exponentially longer.
Susan: I think I need more data. I going to need a trip to both New York and San Francisco to figure that one out.
Bob: My daughter just started an ordering store where she makes bagels, three dozen a week, and sells some. So I think the best bagels are in Pittsburgh.
Alex: Ah, it’s good.
Eric: Okay. So, so far Alex, we’ve struck out on our first softball question to give a full agreement on everybody. Okay. I’m going to do the next question and this one, I’m going to direct it to Bob. Assigning a surrogate decision maker is important for everyone, including those who do don’t have a serious illness. And especially for those who may have nontraditional families.
Bob: So I think it’s important. I think it’s all about how important. I think if you’re from a nontraditional family, it’s very important to make sure that people understand who you would want to talk to. I worry, as a ex-primary care doctor, how much time I have. So the question is how I would prioritize it versus asking about seatbelts or drugs or safe sax. And yet, I think for everyone who’s elderly, which is anyone who’s my age or older, I would say it’s very important and ought to be part of an annual exam that we ought to be asking that, and documenting it in the chart. And if you’re from a state that is legalistic, you ought to have people fill out legally binding paperwork.
Eric: Anybody else’s thoughts on that?
Susan: I’ll just say, I think that could happen outside of the healthcare setting pretty easily and frequently does. So I do think it often does happen that younger adults appoint a surrogate when they engage in estate planning, for example. And I don’t think necessarily, that appointment needs to be a medicalized process. Although, certainly when you start facing complications of serious illness, it is increasingly important to engage as individuals and conversations about goals, values, and preferences. So it’s an example of something that can start outside of the healthcare system and move its way in. I think Bob also noted documenting it. Ideally, there’ll be a place in the chart that actually captures the name of that person and their contact information. I know not all systems are set up to allow for that or facilitate that retrieval, which makes things a little bit more complicated when push comes to shove.
Rebecca: I think I’ll also add too. I think when kids go off to college, we ask them for an emergency contact. That to me is designating a surrogate decision maker. And so you could say that’s sort of starting the normalizing that process of advance care planning. And I would say too, as a primary care provider, it really doesn’t take that long to ask people about a surrogate decision maker. And often, that’s a really great entree, even when people have serious illness to kind of start those conversations.
Eric: Is assigning somebody a surrogate decision maker, is that advance care planning?
Rebecca: I think so, yes.
Susan: Agreed. Yes it is.
Eric: Sean, what do you think?
Sean: You can call it advance care planning if you’d like.
Rebecca: Thanks, Sean. Thank you.
Eric: Look at that. We are coming up with agreements left and right now.
Alex: All right, I’ve got the next one. This one is for Susan.
Bob: Hey, can I say one thing about it though?
Alex: Jump in Bob, please.
Bob: We shouldn’t assume, as many clinicians do, that having a single surrogate other than starting you off, will do the work if something should happen. My sense, although I don’t know the data and others might, is that most families make these decisions by consensus, that they need, after their loved one dies, they still want to have Thanksgiving in Easter and Hanukkah and all other holidays. And so what I’ve often seen happen, which I don’t think we should promote, is this view that Joe’s a surrogate, so we only need to talk to Joe. Because in fact, that puts a lot of pressure on Joe that’s uncalled for pressure and our autonomoustic view of healthcare interferes with the way that most families negotiate many, many decisions.
Susan: I will share in Indiana, we actually had that as our legal model, that there was a decision making by committee up until 2018. And so we had for defaults, it enabled or empowered all close first degree relatives. So you could have up to 20 people in a room. And the challenge with that model in that case, that was without having a hierarchy to sort out who was actually to take priority. We ended up with a lot of disagreements where you’d have the sort of the black sheep of the family show up and you couldn’t move forward until you had consensus. So in those instances, appointing someone was really critical because our default was indeed that committee decision making. It created a lot of challenges.
Alex: What did it changed to after 2018?
Susan: We now have a hierarchy that matches the hierarchy in about 42 other states, but it took about 30 years for us to get there.
Eric: I think Hawaii still has all interested parties as their first default.
Sean: I think the challenge is quite honestly, that decision making, again, it’s like autonomy. We assume that everybody makes decisions the same way. And the reality is they don’t. And trying to translate this very complicated process into a universal means of acting at a complex time in life is really, really difficult. And as Bob says, there are many who would prefer a consensual family, and I use that term very broadly, process to make decisions. There are others for whom that is simply not going to work. And as Susan’s pointed out, the challenge was not here about the decision makers. It was to the people who were asking for the decision to be made. The challenge is not that people made decisions differently, and it was difficult, the challenge was the healthcare professionals who said, “This is not working for me. I need structure.”
Susan: I don’t think I said that, John. We also saw a lot of conflict in families because of that. So this situation where you didn’t have clarity, did actually create conflict within families and equally problematic. Certainly, it was the healthcare providers who were looking for a decision, but that was because a decision needed to be made, and sometimes that’s inescapable.
Rebecca: I think if I go back to Bob’s point, oftentimes, we name a surrogate, but we don’t prepare the surrogate. And that surrogate as you’re all saying might be in the context of multiple people. So we see the name on the file and we’re like, okay, done, we’ll wash our hands because the checkbox was taken care of. But I think just like patients need their own preparation, really it’s the surrogate that we often leave out of these discussions, especially early on. And as we know, oftentimes people show up to our palliative care ICU family meetings and don’t even know that their name was written on a form or they were chosen or even given the opportunity to talk to their family member about that person’s quality of life and what brings life meaning.
Alex: That’s great. All right, we’re going to go on to the next one. This one’s for you, Susan. I think you’ve seen the Venn diagram that I came up with about what are the domains of advance care planning and what are the domains of serious illness communication. That was an editorial in JAGS. And we also discussed it on a prior podcast with Rachelle Bernacki and with Juliet Jacobson. And in that, I placed the POLST within both domains, both within advance care planning and within serious illness communication. You’re somebody who’s thought a lot about the POLST, studied the POLST. How do you think about the POLST in relation to these concepts?
Susan: Well, I’ll step back and say I’m not sure I’m completely on board with the idea that these are two separate things, so I’ll set that aside. But I do think POLST, which I conceptualize as an advance care planning tool, really sits in between those worlds of decisions that are relevant for the present versus the few future. And it I think really highlights how that’s a very blurry line. So the first order on all POLST forms is around code status. That’s not unique to POLST as an order. But when you’re asking someone to make a decision about code status, you’re asking them to make a decision that is in effect right now in the present, right? If they were to arrest in five minutes, that order would dictate what you did.
Susan: And at the same time, it may not happen for three years, right? So it sits in this strange in between place. And typically, in the education around facilitating those conversations, we’re focused on eliciting goals and what are that individual’s goals of care and how does that direct the plan right now, knowing that some of those decisions, even if you make a choice now aren’t actually going to come into play for days, weeks, months. I have done a lot of work on POLST and nursing homes and I’ve seen POLST forms. I saw years ago in Oregon, a POLST form that had been on file in a nursing home resident’s chart for seven years. And it said comfort measures. So for seven years, that person had been treated in accordance with that plan of care. But the code status order that accompanied it was never activated.
Eric: So Susan, and would you say that a POLST is more of a care planning document rather than an advance care planning document?
Susan: I still think of it as an advance care planning tool. I don’t know that I would call it a care planning tool. I don’t know. I’ll have to think about that one, Eric. Interesting.
Alex: And Susan, you said something very intriguing upfront. You said that conceptually you don’t think of advance care planning and serious illness communication as distinct phenomena, or something like that. Could you say more about what you mean there and how you think about these concepts?
Susan: Yeah. I think they’re often discussed as sort of two different things, but I do think you get it right in that there’s a lot of overlap. So a lot of the skills that are used in advance care planning are the same kind of skills you would use in a context where you were communicating information or prognosis or doing an informed consent discussion. I don’t completely buy that there’s separate constructs altogether. I think there’s just way more overlap than not. Hopefully that answers your question.
Alex: Thank you. Anyone else want to weigh in on this one before we get to the next one. We do have a number of areas to cover.
Rebecca: I think I’ll just say, with the POLST, just like advance care planning, and Susan correct me if I’m wrong here, but I think the POLST was meant to be updated every point of care. So every transition into the hospital, every transition out of the hospital. And just like advance directives, they should be updated regularly. And oftentimes, these forms aren’t. So I think it’s one of those things that I think they can act, to me, I guess they can act like advance care planning tools. And if they’re used like they’re supposed to be, they can also act as a care plan at that moment.
Eric: Sean, how would you think about, did you see Alex’s Venn diagram?
Sean: I did, I did. Again, I think it depends on what you’re trying to accomplish. I think for a person in long-term care who has mild to moderate dementia, a POLST is part of the care plan because these are decisions that are likely to need to be made in the setting of the current illness. I think asking which we see everybody over the age of 65 to have a POLST, it’s advance… Susan don’t shake your head, you see this.
Susan: I don’t agree. I agree with you on that, that is inappropriate. How about we get another agreement point.
Sean: There we go. But this is what we see in the real world. And then it becomes both A, advance care planning and B, I’m not sure very effective advance care planning. And again, this is, I think the conundrum that a lot of us are facing where there’s a lot more agreement than disagreement. In the ideal world, advance care planning should work. In the ideal world, POLST should work. In the ideal world, we should update these on every encounter. In the real world, we should update these when things change. And yet, I don’t think anybody’s demonstrated to me that, that happens or that our patients are advocating for it. So again, I come back to, is it worth the effort when there are so many other problems in healthcare that we need to address?
Sean: We published a paper back in 1995 that demonstrated how few advance directives actually made it into the chart. And that number hasn’t changed 25 plus years later, despite huge efforts. And so I don’t disagree with Susan, I don’t disagree with Rebecca. And I think that there’s a lot of effort being put into something that in a healthcare system that is so broken, that needs to be fixed, we should be focusing on the other things. And that comes back to your question about POLST. A well done POLST in the right setting is a really helpful, really helpful care document. A badly done POLST in the wrong setting leads not only to discordant care, but potentially, and we saw this during COVID, the withholding of appropriate care. And for me, the benefit, because it’s so hard to get to, is outweighing the unintended consequences and side effects. And again, no disagreement.
Rebecca: Can I jump in. I feel like we talked about this before, so I don’t want to sound like a broken record, but I maybe will sound like a broken record to get back to what is the definition of advance care planning? So if we say that the rates of advance care planning documentation and advance directives haven’t increased, the public’s awareness of advance care planning or talking about their wishes has increased. So if people are having more conversations but less forms, I’m all for that. And I think the other thing is, is when the Patient Self-Determination Act came about and it was all on the heels of these high profile ICU cases that the idea was, as you’re saying Sean, “Oh, we’ll have these forms and we’ll have these check boxes, and it will just fix all these problems.” All of these family conflicts, all of these issues related to our health system that’s spiraling out of control.
Rebecca: Any rational person would say this form, in the absence of huge change, is just not going to be able to do that. I think I’m heartened by the fact that over the last decade or so, the definition of advance care planning has evolved. So it’s changed from this check box to really thinking about ways to prepare people in their surrogates for medical decision making and communication. And when I think about advance care planning too, it all goes back to like meaning making, like who is this person? Who are they? What’s important to them in their quality of life? I don’t need a checkbox form, I don’t need to know about CPR or mechanical ventilation. I want to know who is this person and what does quality of life mean to them?
Rebecca: And to me, that’s advance care planning, whether it happens upstream or whether it happens when somebody’s at the end of their life. And so I think it gets back to, none of us I think would say that understanding someone as a person and what’s important to them isn’t important. I think some of us might disagree about whether these checkbox forms are important or not. But then that gives back to when we say advance care planning, what do we mean? And what I mean when I say advance care planning is meaning making, is quality of life, is understanding what’s important to that person and what brings meaning and joy to them. And for some people, may include advance directives if it’s right for them and their family members. So it depends upon what you tease out.
Eric: I got a question of for you, Rebecca. Because some of this feels like, especially as we think about the differences, potentially, like Alex’s diagram, advance care planning versus serious illness communication is, all decisions are made in advance. That advance could be minutes from now, hours from now, days, months, years, decades. Should I be thinking about how far in advance? Because like POLST, we were just talking about POLST. POLST is an order, it goes in now. Is that advance care planning? Is that just a plan right now? It’s like if I put an order for Zosyn. They’re not going to get the Zosyn right when I put in the order, it’s an advanced order for when the nurse actually hangs a bag of Zosyn. What is advanced?
Rebecca: Well, I think there a couple things too, because I actually think some of these things about focusing on quality of life and what’s important, help people right now decide the medical care that they might want and in the future. And so I think maybe it’s best just to call it care planning because I think most of the things that I do in palliative care when I’m talking to patients even in the hospital is advanced, as you’re saying. You could call that advance care planning or you could call that serious illness communication.
Rebecca: But I think to me, it’s all about preparing people so that when the stuff hits the fan, they have the time to think about what is important to them so that they can engage with a palliative medicine physician or their hospital doctor or for many people who need to be in powered in our society to speak up against the power differential that is there with untrained folks to get their voices heard. So I think again, call it what you will. I think these things, and again, focusing on quality of life helps us right now in the moment and can help people in the future when they’re having to make those decisions in the moment. I don’t know if I answered your question.
Bob: As by far the oldest person, I want to historically remind people that the word advance in advance care planning refer to making plans so that when you lost capacity, your treatment would be goal concordant. I also want to remind people that very smart people said that the way to have goal concordant care was to fill out forms. The president’s commission, Dan Brock, the smartest people I knew in bioethics said that. It is fabulous to see that we agree that, that didn’t work. I think there are lots of reasons as a society for us to think about the limits of medicine and that lives have finitude. I’m not sure that it’s a healthcare issue as opposed to a social media public issue. And then the question is what should we embed in the healthcare system, given we have limited time and energy? What’s the most important thing we can do that will have the most bang for our buck? But in general, I agree with 90% of what Rebecca said.
Alex: Bob, to that point, all right, next one is directed to you. This is a softball lobbed over the plate. You ready? Completion of advance directives should not be a quality metric. Agree or disagree?
Bob: Oh, I strongly agree it should not be a quality metric.
Alex: And tell us why.
Bob: Well, partly because the data suggests that for the things that it was filled out for historically, it doesn’t achieve them. I think that’s the meta-analysis of meta-analysis of meta-analyses. I think that it may achieve other roles as Rebecca has pointed out her JAGS paper. Those may be important enough. I’m not sure that they would be important enough that I would have them be national medical quality metrics, given there’s so many other things we need to improve.
Bob: And it seems to me that Rebecca and I agree that the forms aren’t the most important thing, even if they have those positive outcomes. So I wouldn’t want healthcare systems to be judged on the forms. And as a clinician, again, the oldest clinician, I have to say that the forms are almost always completely unhelpful. Now maybe it’s not because they’re using Rebecca’s forms. But in general, the forms tell me very little about the discussions or the things that most of us would agree that when you have the conversations we care about. So not only shouldn’t they be a quality metric, we shouldn’t be wasting money paying, encouraging doctors to have them, particularly for the patients like Sean pointed out who are 65 and have-
Eric: Let me take the first part, before Susan, is there any disagreement that advance directive, the form itself, nothing else, should that be a quality metric? I hear Bob say no. Is there any disagreement with that?
Susan: Can I help us with language a little bit, because an advance directive is a directive you make in advance. It’s an umbrella term that refers to several constructs, including the appointment of a legally designated surrogate, which we’ve already agreed can be of value. So what we’re talking about here are living wills, right? I feel like that’s what you’re really saying because an advance directive includes surrogate designation.
Eric: I guess probably the combo of both. When I think about it, like if you’re thinking okay, and probably a lot of medical centers, like the VA, your advance directive includes both, should that be the quality metric?
Rebecca: I can just say, and Sean and I talked about this, and I have seen this happen at other health centers other than UCSF. And I’ll just talk about the UCSF example. By having advance directive documents be part of a quality metric, I can tell you that I could not get anyone in the health system to be interested in any advance care planning or care planning, palliative care, goals of conversations. But as soon as that thing became a quality metric, all the higher ups, it became something that went on their true north board and people were interested and they wanted to talk to palliative care and they wanted to figure out how they were going to do this. Then they found out, hey, if we broaden this advance care planning definition, yes, advance directives and POLST, but also documented goals of care conversations in the medical record, we could get more money.
Rebecca: And so what the health systems did is they broadened this to what they call clinically meaningful, advance care planning, which could help at the bedside. And these are documented discussions with a clinician and it increased funding for the health system and it increased care at the bedside. So to get rid of it, I think would be slamming the door again on this important thing that we want, which is to hear the patient’s voice and to help them make meaning out of their medical care. So I’m for keeping it and expanding it to include goals of care conversations.
Eric: Sean, I see your hand is raised.
Sean: Yeah. I think it’s really important to understand what the quality metric is. So the NQF endorse quality metric for advance care planning is the presence of an advance care plan billing code in the financial, in the administrative data. That is the indicator of quality. And the reason that we have quality metrics within the CMS program is to ensure that patients and families are getting the highest quality care and that we’re not saving money by simply cutting costs. I am thrilled. I really am impressed with what UCSF has done. But UCSF is not the nation. And I don’t know the quality of those conversations that happen that lead to that billing code. I know Bob’s data that suggests that the quality of those conversations is pretty poor and that people leave with very different ideas about what was discussed.
Sean: And I also realize that if I, and this is sort of the person who’s seen too much of the worst aspects of medicine, if I simply document that I had a discussion, even if the discussion was an incredibly low quality, I can get more money for it because I just bill for it. And so without really any link to the outcome or any real link to the quality of the process, I just can’t see how the ACP quality metric is really measuring quality. And that’s what it’s supposed to do.
Alex: Can I ask what would you propose as a better quality metric?
Sean: I think there are a number of exciting ones that A, are just being endorsed now and B, in final preparation. I think the new one that NQF is out for public comment, which is part of the cap survey about do you feel you were heard and understood.
Alex: Yeah. That’s good.
Sean: Is a really good quality metric.
Eric: We all in agreement with that one?
Eric: Susan? Yes.
Sean: I think that is a much better quality metric than the presence of an ACP billing code, which is what it is now.
Bob: Or patient reported outcomes. We have pretty good data in the oncology world that patient reported outcomes improves quality of life. If we’re going to push something, I agree with Rebecca completely. We want patients voice more in medicine. Why don’t we push that?
Eric: What do you think Susan?
Susan: It’s interesting. So it’s not a question of whether we bring that into existence. It exists, right? So then the question is, do we advocate for it to be removed, which is some of what I’m hearing in the comments from Sean and Bob, and they can tell me if I’m wrong. I think it’s really challenging to think about advocating to remove those billing and codes after all the work that went into advocating to have them. I think it really potentially damages the credibility of the field. So many of our colleagues view what they do in palliative care as including advance care planning. Those codes have motivated change in a variety of settings to, I guess, I just have some concerns about that positioning that we, after all the work to put those in place a couple years into it, pulling the plug and saying, nevermind, we changed our mind. That’s no longer what we want.
Susan: I love the idea of adding additional metrics and looking at patient reported outcomes. I love the idea of focusing on feeling heard and understood, but I think it’s really problematic to be advocating as a field for something that we are so closely tied to correctly or incorrectly that we should just yank the plug on it and say, “Nevermind, we were wrong.” I have some concerns about that.
Sean: I think Susan, I don’t want to conflate two issues here. I think what Bob and I, and what Eric asked is, are we advocating for removing advance care planning as a quality metric? And I think both of us, the answer is yes. I certainly don’t want to remove an advance care planning billing code, or being able to bill for goals of care discussion. That’s very different. I don’t want to remove a billing code. What I want to do is I want remove the linkage between that billing code and a quality indicator, at the moment. It’s analogous to saying an extensive ENM visit where I bill a 233 is better quality than a 231.
Eric: I’m going to find an area of potential disagreement or agreement. Susan, I’m going to go to you. So all patients, whether Sean calls advance care planning, serious illness communication, all patients in a nursing home should have either advance care planning, serious illness communication, you call it what you will, everybody should have it.
Susan: A conversation, I think everyone should be offered the opportunity to have a conversation.
Eric: Yeah. Engaged with it. Offered, invited to have a conversation.
Eric: Is there disagreement on this panel?
Alex: All right.
Susan: I think you found another one. [laughter]
Alex: Good. Good. I’m going to move on to the next one. This one is for Sean. Sean, one of the unintended consequences of this debate, your paper in JAMA is that people, particularly people in power who are in control of funding and things like that, confusing criticism of advance care planning for criticism of all of palliative care. And that’s been a particular challenge for junior colleagues.
Sean: Is there a question there Alex?
Alex: Oh, it’s agree or disagree?
Sean: Oh, it’s an agree or disagree. It’s in the middle. I’m in the middle. Let me let expand on that. I think that debates around science are really, really helpful. I think Bob draws your attention to Adam Grant’s books and his writing. So I think that really questioning what we do is a good thing that routes to improved patient care. I also think it’s really important that we be very clear that advance care planning, as traditionally defined, it goes well beyond palliative care. Palliative care likes to own it in some respects because what we do, that is the communication skills that we teach and that are our scalpel are so important to a good ACP discussion.
Sean: And I would argue that most of what we do isn’t advance care planning because it’s real time decision making. And so I think again, people say, “Well, is it just about semantics and is it just about language?” Yes, and we have to be really, really clear about what our language is. It’s one of the reasons in the recent articles that I’ve written palliative care is not mentioned because it’s really not about palliative care. And I think we really need to be very careful about that. It’s much broader than palliative care. I think it’s the first time in our community that we’ve had to wrestle with a disagreement, hence this podcast, or a different interpret of the evidence. Other fields have had to do that
Alex: Before we go to Bob, Susan?
Susan: Yeah. Well I want to say, I think there’s a couple things that are interesting about what you said. First of all, this does feel primarily like a manufactured controversy. I don’t think there was a tremendous amount of debate Sean, before wrote your initial editorial and there still isn’t a tremendous amount of debate. I do think there’s some challenges with the way in which the evidence that you referenced has been characterized and the soundbite I’ve heard you and Bob repeat is that 25 years of research shows advance care planning doesn’t work. And that really isn’t what the 2018 systematic review of systematic reviews says, if you low look back at it. In fact, Rebecca and I spoke with the lead author, Geronimo Jimenez on Monday, he’s now in Chile, and we had a great conversation with him. And he did not feel like his work was being fairly characterized in the discussions after having reviewed the editorials and was more aligned and sympathetic to the letters of response that described a more nuanced interpretation of the science.
Susan: And so I think we have to be careful too. I feel like some of this is really set advance care planning, I think your editorial was advance directive/advance care planning. And we’re talking about words mattering, but right away, there are two things that are smashed together. The very first time I read your editorial, I circled that. And I said, “These are not the same thing.” So words do matter and I do think we want to be thoughtful about how we use the science to guide our decision making. Rebecca, I don’t know if you want to say anything more about our conversation with Geronimo.
Rebecca: I think just that he also agreed that some of the things that really come out in the literature are outcomes that maybe weren’t the initial outcomes that we were all hoping that it was going to save the healthcare system and save millions and gazillions of dollars, but that it does appear to be doing something very clinically meaningful, particularly for surrogate decision makers that increases patients and surrogates satisfaction with communication, with medical care, with medical decision making and decreases surrogate burden. And so again, that those, I think he agreed that those might be better outcomes as we move forward.
Rebecca: I think to your point, I don’t know if it was Sean or Bob, are those clinically meaningful and important outcomes for health systems? I would hope that they are particularly as we’re in ACOs and looking at value based purchasing and things like that. I would hope that those things would be important. The other thing I will say is if health systems take the long game, are you making your customers happy? I can tell you my own family, many other patients, if there’s a bad situation that it happens and a surrogate is not happy about the way things went down and they have decreased satisfaction with care and communication and all of those things, they’re not going to be coming back to that health system. So I just think that there are ripple effects for mistrust. That can happen when… So just to say that I think advance care, to get back Geronimo’s point, I think there are important outcomes. They might not be the original outcomes that we had hoped, but still [crosstalk 00:44:50].
Alex: I see your hand raised Bob.
Bob: Yeah. Again, there’s a history and that was that advance directives that I think were all agreeing on, that advance directives or advance care planning hasn’t achieved the goal concordant care that in the original publications, that was the argument for it. Russ [inaudible] wrote something in SJIM in the early 2000s saying that there are a lot of other goals that one could posit for both advance care planning and advance directives. We might say those are important enough that it’s worth making them a quality metric. That’s a whole different argument. The argument can change, that’s okay with me.
Bob: I want to go back to Alex’s comment, which is if people misunderstand what we say, we shouldn’t say it because it has unintended consequences. I think what we should do is we should say, could we have said it better? And in retrospect, I think as Susan points out, there are certain things that I would’ve said a little differently that would’ve been more nuanced. And yet, the fact that people misunderstand it doesn’t mean that we shouldn’t say what we think the data says. That would be like saying that you can’t do science because people might misunderstand science and use it for nefarious purposes. I don’t think we want to go there. I think that would be a very, very bad cultural moment.
Alex: We’re going to move on. We’re down to the last eight minutes. We’re enjoying this rich discussion here. Rebecca, you said earlier advance care planning has evolved, right? It used to be focused on forms, as we talked about the history here in the early days of advance care planning. And then the last 10 years, we’ve moved on and we’re in a different place now. You like how I used the remap technique there, Bob? Yep.
Alex: Okay. So last week I did some teaching with the fellows. I was on service and I had a geriatrics fellow and a palliative care fellow. And I wanted to talk to them about this issue. So I got the white board and I wrote advance care planning. I turned to them and I said, “What’s advance care planning?” And this is late in the year, geriatrics and palliative care fellow said POLST. They said advance directives. They said durable power of attorney for healthcare, like assigning a healthcare proxy. Their answers were forms. So my question to you is, I agree with you that there’s a modern conception of advance care planning where it’s this process by which people understand their values, their goals, their preferences regarding future care. But if late stage geriatric and palliative care fellows see it as forms, what’s gone wrong here? There’s obviously some disconnect. Where do we need to move forward as a field?
Rebecca: Yeah. I think sort of old things stick, right? And because things started out being focused on forms, I think that’s been talked about for a long time. And it’s not just late stage palliative care folks, it’s people who make decisions at health systems, who think about it the same way. And so I personally think we need a massive marketing campaign, whether it’s a New York Times article, another JAMA article, we all scream it from the rooftops. But I think that there needs to be a reeducation. Because first of all, in the public, people are doing this all the time in their churches and senior centers and like that. And then you say advance care planning and they think forms and they’re like, “Nope, not doing it.”
Rebecca: But if it’s like, hey, it’s just doing what you’re already doing, talking around your kitchen table, oh, I can do that. And then for clinicians who are like, “Oh, I have to go to my clinic and somehow find 45 minutes to complete a form with someone,” nope, you just need to ask them about their surrogate decision made and help them start preparing and talking about quality of life. If we’re talking about these quality metrics, it doesn’t just need to be the form, it could be these discussions. I really think that we need a massive reeducation campaign.
Eric: So I got a question and this is going to go to Sean because you mentioned this as like our big first controversy in palliative care. But what was it, 12 years ago, the big controversy is, do we need to rename palliative care? Because when people talked about palliative care, everybody was thinking, “Oh, it’s just end of life care,” like it’s for people who are dying. And I got to say, for me, it feels like culture has changed, at least in my medical center, that culture changed takes a while and palliative care is not just end of life care. And I think a large part of that is we have outpatient palliative care. So people are now used to us seeing people much earlier on. Is this just about renaming a good portion of advance care planning to serious illness communication? Is it kind of like rebranding palliative care to something else that we talked about before?
Sean: It may be Eric, and I think it comes back to where do you want to put your money? I think Rebecca’s absolutely right. If we put 25 million into a public relations campaign that reeducate people about what advance care planning is, actually the estimate is probably about 30, 35 million, that might be effective. On the other hand, I would much rather be going to those deep pockets and asking for a 35 million campaign to enhance education around palliative care. Because at least for palliative care, I can point to a series of outcomes that are clearly of importance to patients and families and I’m not sure that have direct impact. And again, I’m not sure I can do that with advance care planning yet. So again, it comes down to where do we want to spend limited funds, limited personal intellectual capital and where do we want to be putting our efforts? And for me, it’s not there, it’s someplace else. It’s not advance care planning, it’s other areas.
Susan: And that’s okay, but it is there for other people, right? I think that’s fine. You’re absolutely entitled to advocate and work in that direction. But I don’t think it means that everyone else needs to stop with they’re doing, and that has been the call, that we should stop spending any money on advance care planning in any way, shape or form, which is a pretty drastic recommendation. And I’ll also say sort of neglects the fact that this isn’t just a construct or concept that is part of the fabric of the United States. It’s an international construct. There are people engaged in advance care planning in countries all over the world. So I feel like it is a little bit of a false choice.
Rebecca: And I will say palliative care, a lot of those studies including Temel’s study of palliative care included advance care planning. So it’s hard to even tease out some of the things that we do in palliative care. It all kind of comes together in that secret sauce, I think.
Alex: Last question.
Eric: Part of the NCP eight core domains, including legal and ethical and advance care planning. Alex, go ahead.
Alex: Last question. This is for Bob. This relates to something that Sean was just talking about. Is the idea that if we remove funding from advance care planning, we could put it towards palliative care, a false equivalence. In other words, isn’t it more likely that the health system would just pocket that money or pass it on to shareholders rather than moving it into palliative care? And is there an issue with this message coming from senior leaders in palliative care, “Hey, direct the resources towards us”? Bob, your thoughts on that quickly, and then we got to wrap it up.
Bob: I want to separate palliative care, which is a medical healthcare, nursing doctors, pharmacists, social workers from specialty palliative care. They’re very different things. I think we often conflate them. Second, I can make recommendations for how I think that governmental bodies ought to spend their money, whether I’m old or not, that doesn’t mean they listen to me. Again, in a world of science, we make arguments. As Susan pointed out, people don’t have to buy the arguments. They can look at the data and say that we misinterpreted the data. What we want to move things forward is in fact, a healthy debate so that science does what we want science to do. I think if people don’t want a healthy debate, that to me is way more disturbing than a healthy debate where Susan and Rebecca say, Bob and Sean and Diane have it wrong. That’s okay.
Susan: I think I love the idea of a healthy debate, but not a circular firing squad. So I’m on board for a healthy debate.
Eric: Well, let me ask one question, my last question, is would we agree that everybody with a serious illness should be offered to be engaged in a process of talking about values, goals, preferences?
Bob: Yeah. And about how their coping with it.
Eric: Lightning, real quick. You have three letters, you can only describe it in three letters, hypothetically, ACP or serious illness communication. Is talking about preferences, let’s say for mild dementia, is that ACP or SIC?
Rebecca: Advance care planning in mild cognitive impairment?
Eric: Yeah. Well, talking about goals, preferences.
Rebecca: I think it depends upon what else is going on in that person’s life.
Eric: They have mild dementia.
Rebecca: I think it’s advance.
Bob: I’m going to argue it’s an unhelpful false equivalent that is like asking angels dancing on heads of pins.
Eric: All right. Sean, would you be agree with Bob?
Eric: All right.
Susan: Yeah. And I’ve already said I don’t completely agree. Those are two separate things.
Eric: You don’t even believe in the concepts.
Alex: Right, right.
Eric: Well, I want to thank all of you for joining us. Alex, you want to give us a little bit more of that song? I know we’re over the hour.
Eric: I really truly am honored to have all four of you on. I know this is a hard subject. I think like any debate, you can see it from a lot of different sides. I think we see it a lot right now with COVID and a lot of debate online on Twitter. So I just want to thank you for having the courage to be on here and talking about this subject. Very big thank you.
Bob: Good to see everybody. Thank you.
Rebecca: Yeah, it’s good to see everybody. Appreciate it.
Susan: Take care.
Eric: And as always, thank you Archstone Foundation for your continued support and to all of our listeners.