Guardianship and End-of-Life Decision Making: A Podcast with Andy Cohen and Liz Dzeng

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

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: Today we’re welcoming back to the podcast, Andrew Cohen, who is assistant professor of Geriatrics at Yale and was on one of our early, earlier episodes. Welcome back to the GeriPal podcast Andrew.

Andrew: It’s a pleasure to be back.

Eric: And who else? I see somebody else.

Alex: Yes, we’re welcoming back to our podcast Liz Dzeng, who is assistant professor of hospital medicine at UCF. Welcome back to the GeriPal podcast Liz.

Liz: Thank you. It’s great to be here.

Eric: So we’re going to be starting off this discussion on guardianship and end of life care. Does it change anything if people have guardians? I think I have a guess, but I may be wrong. But before we go into that topic, we always have a song request. Andrew, do you have a song request for Alex?

Andrew: Yes, I do. Liz and I put our heads together about this and we settled on, Better Things.

Eric: Better Things by whom?

Andrew: It’s originally by, The Kinks. But there have been a couple of covers, including one by Dar Williams that we both really liked.

Alex: I liked that cover too, but I cannot emulate Dar Williams. So I’m going to do the Pearl Jam-ish version without the Pearl Jam backing band. But with tell us why you chose Better Things. Things are going great now, right? Like why… [laughter]

Andrew: We were looking ahead towards, what’s going to be a really difficult winter and thinking about 2021 and about how things are going to be better sometime next year.

Alex: (singing].

Eric: Awesome. Thank you Alex.

Alex: It’s a fun song. Thanks.

Eric: Andrew. I’m going to start off with you. So how did you get interested in the topic of guardianship and whether or not that has anything to do with high-intensity end of life treatment?

Andrew: So there were really two different reasons. One of them is that, when I started doing my geriatrics scholarship, I realized I was seeing people with guardians or people who needed guardians fairly often and was for the first time filling out petitions to the probate court and thinking about this system pretty often. And in the hospital had a few experiences, frankly negative experiences with guardians where I couldn’t reach them or I could reach them, but they didn’t make the decision that I thought was clinically appropriate. So I was interested in this phenomenon and found out pretty quickly that it hadn’t been studied empirically for reasons I can get into.

Andrew: The second reason is that, I’m interested more broadly in surrogate decision-making and this idea that we intuitively expect a family member to be available and to know how to be a good surrogate decision maker if someone needs one. And guardianship was a kind of an interesting model for thinking about surrogate decision making since in many cases, guardians don’t know the person before they have to start making decisions for them.

Andrew: So it can be difficult or impossible for them to try to imagine what the person wanted. And also because unlike family members, guardians, at least in some States are having laws that direct them to use a specific standard. So the decision making process for guardians is both kind of more explicit, and in a certain way less complicated because they didn’t know the person head of time. So trying to imagine what they wanted is usually not possible.

Alex: Yeah. Can we just backing up for a sec? What is a guardian? Just to just so we all start on the same page.

Andrew: So a guardian is a person who is appointed by the courts to make decisions for another person who has a diminished ability to make those decisions themselves. And in some cases, the scope of decisions the person is having problems with is really confined to financial decisions. And so you can have a guardian appointed just to make financial decisions for you. But in some cases, it’s necessary for a guardian to be appointed, to make medical and other personal decisions for you including decisions about medical treatment and decisions about where you live.

Alex: That’s a critically important distinction, the sort of financial guardian as well as the healthcare decision-making guardian. And that role may be split. It may be combined, it maybe that they have one guardian for one, but not the other, is that correct?

Andrew: That’s right. It can be the same person. It can be different people. And it can also, to make things more complicated change over time because capacity can change over time. So, at various points in your life, you could need one or both of these types of assistance.

Alex: And can it be that, you have a family member could be a guardian or it could be a stranger. The so-called stranger guardian, just for example, a professional lawyer guardian.

Andrew: That is correct. And we think that most of the time it’s actually a family member. Probably about 80% of the time, it’s a family member and 20% of the time, it’s a stranger. And it depends on where you live, what type of professional role that person has. I work in Connecticut, it’s almost always a lawyer. Those of you in California can tell me if that’s true there as well, but it doesn’t have to a lawyer.

Alex: Similar in our experience, I don’t know about you Liz, or you Eric.

Eric: I don’t feel like I often see lawyers here, and the ones that we see are usually professional conservators. When we’ve talked about con conservatorship and guardianship, same thing?

Andrew: For the purposes of the GeriPal podcast, same thing. California and Connecticut to my knowledge are that are two of the only States that use the term conservator, or we say conservator (different syllable emphasis) in Connecticut. But mostly it’s a guardian.

Eric: All right. So in my own personal experience with guardians, when I see somebody has a conservator or a guardian in the ICU, I go into a fab or a flutter, my heart starts racing cause I know this is going to get a lot more complicated, going to depend on what County that person lives, as far as what kind of I expect how complicated it’s going to be. They may feel like they’re restricted on what they can do around code status changes. And it just feels harder. Is that kind of your experiences to Liz and Andrew?

Liz: Yeah, I think that in my experience as a hospitalist, when you asked, what are the conservators usually like? I was thinking back on my own experiences and actually what I could remember were the experiences of trying to get a conservator and how it takes months. And then the patient is stuck in the hospital for months while we’re trying to figure out what’s on. So there’s also the legal process of trying to establish one that can be quite challenging.

Andrew: Yeah. That’s been my experience too, that a certain feeling of dread can settle upon the day when there’s a sick patient with a guardian where the complicated issues haven’t been talked about yet.

Eric: And that’s why I thought your Jags article was really interesting. So we’ll have a link to your Jags article that was published I think about a month ago or a month or two ago. Guardianship and end of life care for veterans in dementia? What question were you trying to answer here?

Andrew: We were trying to find out whether the clinical experience that patients who are represented by a guardian have different types of end of life care than other patients, whether that was true. And let me explain. So my experience, and I think a lot of clinicians experience has been not only that people who are represented by a guardian present challenges for clinicians, but that sometimes the default treatment pathway for those patients is just to do everything to provide maximal care up until the very end of life, because the alternative is so challenging. So we wanted to know whether it was really true that patients represented by guardians got higher intensity care than other patients.

Eric: Yeah. I mean, if I had to guess my answer also would be yes. I’m thinking back to all the time, there seems to be this additional structure that you have to go through. And man, that’s got to create barriers to the intensity of end of life care, arguing for more intensity in the folks that got conservative. It seems like for me, it kind of open, shut pre reading this article. Of course they do.

Andrew: That’s what we thought too. That was our hypothesis going in. So we identified a group of people in the VA system who had guardians and I can get back to why the VA, later. And all of the patients in our sample had either moderately severe or severe dementia. And so we compared the end of life care received by patients with guardians to patients, without guardians. And to our surprise, we found no significant difference between the groups. We looked at six outcomes, three, a high intensity treatments were more common in the guardian group. And three were more common in the control group.

Alex: Which three do you remember?

Andrew: So the six were, I guess I can tell you. So, ICU transfer mechanical ventilation and CPR were somewhat more common in the guardian group, but not in a statistically significant way. And then death in the hospital, repeated hospitalizations at the end of life and placement of a feeding tube near the end of life were more common in the control group, which was not what we expected.

Eric: And I’m looking at the numbers. They don’t, even if they were statistically significant, they are not a very big difference between the groups. Like mechanical ventilation, 7% versus 6%. Not huge differences.

Andrew: Yeah, that’s right. We thought that these types of high-intensity treatments would be much much more common among people with guardians because that had been our experience. It was hard to imagine how somebody with a guardian would not get intubated if they develop respiratory distress. But in fact, that was not more likely among that group than the control group.

Alex: Okay, let’s digest this for a moment and maybe we can do it in two different ways. The first, is there’s something wrong with your study because you found the wrong result. So is there any important limitations or caveats that would make you suspect that, maybe this isn’t, maybe there is actually a difference and maybe we didn’t detect it.

Andrew: Sure, and I think there are several important limitations. One of which, as with every study, you need to start with who’s in the study populations. So these are all veterans. They’re all veterans with dementia. So they are mostly men and they’re mostly white.

Alex: Why did you choose veterans?

Andrew: Because that was the only way we knew to identify people with guardians was using the VA electronic medical record. So the reason that this population has been difficult to study is that, no one outside of a couple of States even keep centralized registries of who’s under guardianship. So it’s been very hard to link the information about guardianship to a specific patient, and to look at that patient’s care. So certainly a limitation that these were all veterans.

Andrew: And then as we get to in the article, we had expected somewhat larger effect sizes. So it is possible that there is a smaller difference between the groups that we weren’t powered to detect. I think that your observation that even if these differences were to exist, they would be fairly small in magnitudes is true.

Eric: Yeah. My preconceived notion was that there were going to be big differences. I don’t really care if there was statistically significant small differences because this is kind of destroy my preconceived notions.

Alex: And our preconceived notion we should say from working within the VA system. So let’s take the other angle. What if the paper’s right and surprising though, these findings are, there really are no differences in the intensity of end-of-life care between older adults with dementia who have a guardian and those without a guardian. What are the explanations for the differences between what we expected based on our clinical experience and these findings?

Andrew: I think that one of several explanations, and I know this is something that Liz has thought about a lot. One possible explanation is that there wasn’t a big difference because high-intensity treatment was pretty common in the control group. So we found that a higher percentage of patients than we expected without guardians were getting these treatments. So there was less of an ability to detect the big difference because everybody was getting these treatments.

Andrew: And we mention of this in the article, but others have devoted entire pieces to it recently that certain types of high intensity care are becoming more common among patients with advanced dementia. And maybe perhaps Liz has some thoughts about that, but I don’t have a unifying explanation as to why that might be.

Alex: I had a preconceived notion and probably a lot of providers do, is recall bias, is that we think about conservators differently than family members. Maybe we expect them to be part of the healthcare team instead of part of the family team. I know I’m separating those two, they should be together, but maybe that’s playing a role here. And that we’re having conflict with somebody within the healthcare team, quote, unquote, maybe cause me to remember those events more commonly.

Andrew: Yeah. I certainly think that’s part of it also. I think that we all have many years of medical training and get used to the idea that we’re going to make a treatment recommendations to a family member and they may choose something different. When a stranger who doesn’t know the person and is difficult to reach is doing something that we are distressed by, I think that is something we take with us and carry with us and is deeply distressing in a way that a family member making the same decision might not be.

Alex: Right. And so we look for some explanation and this is an easy explanation to land on. They don’t know the person, they’re not a family member. There are a professional conservator.

Alex: And then Alvin Feinstein, who was a legend at Yale for years predated you, wrote this wonderful piece called the chagrin factor. We remember our last bad experience. I remember what happened with that conservator and that’s going to shape my decision-making going forward. So maybe these psychological biases are to explain some of this discrepancy between what we expect and, Liz you’ve got to comment.

Liz: Yeah. And I also was sort of thinking that, and this goes to sort of what I like to talk about later in terms of the way we think about autonomy and substituted judgment, but with families, there’s sort of this inherent notion that, okay, they’re going to generally do substituted judgment. They know the patient. And so, we are more okay with accepting that I think, whereas if it’s a conservator, you’re thinking, okay, this is part of the system, it’s the healthcare system and it’s a little bit less personal. And so you’re sort of, like when there’s a decision that you don’t think is consistent with what’s clinically appropriate, you’re, this is the system rather than, okay, this is what the patient and the family may have wanted. So I’m wondering if that’s maybe [inaudible 00:20:13].

Eric: And can you remind me of substituted judgment?

Liz: Yeah, so substituted judgment really focuses on the ethical principle of autonomy, which is one of four ethical principles. The others being beneficence are acting in the best interest of the patient. Non-maleficence, doing no harm and justice. And in the United States, we have this tremendous focus on autonomy for various reasons. And so substituted judgment is an attempt to pass that autonomy onto the family member or a surrogate, if the patient no longer the capacity to make decisions on their own.

Liz: So substituted judgment basically is that, that surrogate makes decisions based on what they think the patient would have wanted if they were able to speak for themselves. So based on what they know about the patient’s goals and values and prior life experiences, they’re supposed to make that decision. Obviously that can be very challenging sometimes.

Eric: What’s the alternative?

Liz: So as I mentioned, there are four ethical principles, autonomy being one of them. And you can also think about, well, I think that my own sense is that these ethical principles should be equals. And so it’s not that autonomy is more important than beneficence and non-maleficence, they all should be considered equally. And so an alternative would be to think about these issues from perhaps a best interest standard, which is actually what’s done in other countries for example, in the United Kingdom, if a patient loses a capacity to make decisions, there’s actually a mental capacity act of 2005 that states that decisions should be made on a best interest standard. The doctor actually has the ability to make decisions based on what’s clinically in the best interest of the patient.

Liz: And now of course, like there’s a lot of critiques about that, especially from Americans who think about that, they’re like, well, that’s very like, sort of, paternalistic in fact, for the doctor to say, this is what’s in the patient’s best clinical interest. But, there are certain things that we can make clinical judgments and they should also take into account the patient’s goals and values and what the family wants and that sort of thing. But ultimately you can think about what’s in the patient’s best interests. That’s one way…

Eric: Yeah, I remember going back to an older Jags article by Dan Sulmasy back in I think 2007, they gave people like hypothetical prompts from a substituted judgment standpoint to a best interest standpoint. How do you want your family or providers to make decisions for yourself? And the majority wanted like a combination of best interest standard versus, and substitute of judgment. And there were some people who just wanted substitute judgment and some people just want to bet it best interest, but it certainly wasn’t everybody just wants substituted judgment and how they want their family or their loved ones or providers to make decisions for themselves.

Liz: Yeah. And I think that’s also reflected in how we experienced it as well. And also the interviews that I’ve done with people is that, actually having that [inaudible 00:23:25] without the guidance can be really stressful and very guilt. The families can have a lot of guilt around these decisions and there’s a huge burden of decision making. Sometimes you kind of want the doctors to sort of consider what’s in the patient’s best interest and guide the patient.

Andrew: I think this is particularly challenging when we think about dementia, because the maneuver we’re asking people to do with a substituted judgment for a person with dementia is to think about how the person that they were able to have imagined themselves, what it would be like to be in this state, what they would have wanted. And that’s extraordinarily difficult.

Andrew: When we’re thinking about someone who has a precipitous loss of capacity is in a car accident and then on life support and when they want their heart shot or something like that. I think that it’s easier for us to imagine what we might want to not see but to try to imagine what the long course is going to be like for dementia and what our preferences might be like at another time, and to try to communicate that to someone who’s going to make decisions for us is really very difficult.

Alex: Yeah there’s been some pushback on the concept of advanced care planning and we’ll refer to other podcasts. The one we did with Sean Morrison, particularly where he quoted HL Mencken and said that, for every problem, there is a solution that is clear something, something and wrong. And he included advanced care planning and advanced directives in that formulation. Liz, you wrote a very thoughtful critique and a commentary about Andrew’s study. Do you want to tell us more about what your main thesis was in that commentary?

Liz: Yeah, so I thought what was most interesting about Andrew’s study was this lack of difference between guardians and known surrogates or family members and that sort of thing. And I think that really highlights some of the things that we’ve already talked about that, it’s not that, and Andrew, you mentioned this, that the surprising finding was that actually there was more aggressive care in people with family members who were making decisions.

Liz: And so that really points to how maybe there’s just this culture of higher intensity care. And I also thought it was interesting that in your study, a lot of the people were in high-intensity regions. So areas of the country where there was more high intensity care. And so as a sociologist, I think about things on an institutional level and how institutional cultures and policies really influenced this.

Liz: And so I think the main takeaway that I got from this paper was that this just shows that a lot of what we’re, a lot of the way that we act isn’t really based on how well we know the patient and how we’re able to steer based on advanced care planning and advanced directives, but rather that the institutional culture, plays a huge part in things.

Liz: And so that’s one aspect of it, but also, that there are flaws in advanced care planning and advanced directives. Like Alex said, we can refer to the previous podcast with Sean Morrison about that, but also this concept of substituted judgment and this primacy of autonomy that we have in America, I think we need to rethink because, none of us, as doctors, we have a better sense of what goes on if someone is in the ICU, but somebody who’s never had that experience just will have a really difficult time envisioning what that is.

Liz: And so a person who’s trying to write an advanced directive, or think about what their loved one said in their advanced directive and trying to extrapolate that into a family meeting that they’re in right now, that’s just going to be incredibly difficult to do. And so maybe we should think about other ways that we can help facilitate decision-making that isn’t necessarily just what the patient trying to think about autonomy, but also what’s in the patient’s best interests. What doesn’t cause harm by over-treatment. And also like the just distribution of resources and, and issues of social justice.

Liz: And so, thinking about things like crisis communications, which is going to be helpful for both guardians and families and surrogates, how do we communicate between doctors and patients to help achieve the best results, thinking about institutional cultures and how we can put into place systems and policies that mitigate cultures of high intensity care and other things that maybe supplement all the work that we’ve been doing in advanced care planning as well.

Alex: And are there examples from other countries that we can look to, that models of care, and how much of that has to do with the system and the model of care and how much it has to do as you say, with cultural differences between what’s normative in the US and what’s normative in the UK, for example.

Liz: Yeah. So, it’s actually quite interesting. So I’ve already talked about the UK and the mental capacity act, but, I think what’s more, almost more interesting are the ways that we think about ethics differently in these countries. So in the US, when I interviewed doctors about, would you offer treatments that might not work, or would you give treatments that you know probably wouldn’t work, but it’s what the patient wanted. Doctors in the U S tend to say “Well, we need to make sure that we’re, it would be unethical for me to override this patient’s autonomy.”

Liz: And then when I talked to doctors in France and in the UK, they say it would be absolutely unethical for me to admit a patient with advanced dementia, to the ICU, for high intensity treatments. That would create so much harm. That would not be in their best interest. And so I just think though interesting that we actually have completely different ways of thinking about what is ethical. And so that’s the question that I’m trying to get at, and it’s a difficult question to get at. But yeah, I think it’s beyond cultures and policies. It’s how we think about what’s right and wrong.

Eric: I think that’s a fascinating thing about Andrew’s study is that it does argue that it’s really not about the patient or the surrogate, like you were saying, it’s about the system that we have in the US that, patient preferences may not matter as much as we actually think and family preferences, it’s what hospital you had admitted to, what’s the culture of that hospital around end of life care? What are all the conflicts of interest as far as, what are they getting paid to do? So many factors. Probably some of it is also patient preferences and potentially things like advanced care planning, but there’s so many other factors that play a role in that.

Andrew: Well, I will say a couple of, so I think that system level factors and cultural factors are probably hugely important. Many decisions are reign right in an important way that we need to think more about. I will say that, so we have to remember in my state, these are patients with dementia. So whether or not those there are broader cultural factors where this is a phenomenon for patients with dementia, there’s some [inaudible 00:31:13].

Andrew: I guess I’ll also say that we had done another smaller study looking at a group of patients with guardians and their end of life care in the VA. And we did find that people who had a living will some type of advanced directive, even if generic were less likely to get high intensity care than people who didn’t. So, that may be because the court is looking for some evidence that the person might’ve wanted less than maximal care. I’m not sure why, but there does seem at least for this population to be some benefit to having an advanced directive.

Alex: And I often feel like working with conservators makes such a big difference on what we say. It’s like working with family members. If we say, this would be the standard of care, this is what we would do in this case and recommend in this case. And if I use the word standard of care, we’re all good. That’s something that they can work with. And I have a feel like they’re looking for something that they can work with within the frame of what they can actually do, like here in California, it depends on which County they’re in. And it just reminds me and your study reminds me of the importance of communication, just like the importance of communication with family members, the importance of communication with conservators or guardians.

Eric: And I can think clinically of times when I’ve said to a conservator hospice would be the standard of care for treatment for somebody with advanced dementia, like the person who you’re assigned to care for.

Alex: Yeah. And it’s so much harder for them to go against the standard of care.

Liz: I think that’s a really important point. I think one of the challenges with the focus on autonomy is that sometimes people can equate that to giving blanket, a menu of choices without making a recommendation. And so stating that something’s a standard of care, stating that this is like the very appropriate thing to do, or a recommendation is really important and can really help guide the conversation from the beginning.

Alex: My concern is what Andrew noted early on in our podcast, that there are rising rates of high-intensity interventions, many of them not tube feeds. I’m hopeful that tube feeds have been coming down at least.

Andrew: Tube feeds have gone down a lot. It’s interesting that that’s occurred at the same time as other types of claims in treatment have gone up.

Alex: And I don’t think that we’re returning to a place where it’s, doctor knows best, but I do think that there is an argument to be made that because as doctors or nurse practitioners, clinicians who have seen many patients go through these experiences, who have the understanding of what the outcomes are of an intensive care unit visit for a person with dementia, that we have a responsibility, a professional responsibility to help guide these conversations, in terms of the information we provide, in terms of the recommendations that we make.

Alex: I wanted to ask you at another question about, we had a podcast with Barack Gaster who created advanced directive for people with dementia. And I see both nodding so you may have heard of this. And the idea there, as we talked about in that podcast is, that people who have dementia have a predictable course. There’s sort of a sign post, if you will, of what typically happens to them. They will be certain decisions that need to be made along the way. For example, around feeding, as we were just talking about.

Alex: At some point it becomes difficult to swallow and coordinate those muscles effectively, and they’re at risk for aspiration and aspiration pneumonia. And so here are some options, including hand feeding, for persons when they reach that state. And that is particular to people with dementia. I’m interested in your thoughts about what you think of at the dementia specific advanced directive?

Liz: I can go first. I think that it’s helpful to have things like this but I also continue to worry that there’s still the problem of people not being able to anticipate their future self, especially with dementia. There’ve been studies about this that a lot of us wouldn’t want to be, would say, we wouldn’t want to be in a disabled state or wouldn’t want to have that particular lifestyle, but then when we get there or if we get there, we’re okay with it. Be it disability or with dementia where maybe you’ve forgotten, but you’re happy.

Liz: And so I think it’s just so difficult for us to anticipate what our future state might be, that you can write those things down and yes, that would probably be helpful. And I think that’s actually more helpful for the family to help make them feel more comfortable about making these decisions, but in terms of what actually that particular person might be feeling at that particular time, when they’ve advanced to moderate or advanced dementia, it might be completely different. And so I think it’s still challenging. It’s maybe a good step, but it’s not perfect.

Andrew: I have some specific concerns about dementia, specific directives, one of which is that they, by and large ask people to give preferences about treatments when we know that it’s really the outcomes of treatments that people care about. And as Liz is saying, those are really hard to imagine, meaningfully ahead of time.

Andrew: In addition, in another recent qualitative study that we did here, we talked to people with early dementia and their caregivers about planning for the future and including advanced care planning. And most of them were really not prepared to do that. And there are a lot of, I think there would be a lot of barriers to actually implementing such a directive.

Andrew: And I’m also, I think Liz is too, I think a lot about the selfhood problem with dementia, this idea that sometimes called precedent autonomy, whether, and to what extent your present self can make decisions for your future self. And I worry that people have such a difficult time imagining what their lives will be like if they develop dementia that, it’s hard for you to give references about specific treatments ahead of time.

Andrew: We don’t need to go on this particular attention. There’s a long debate in the ethics literature about this. I think that having people predict in detail what they’re going to want years into impaired capacity is really hard.

Eric: Yeah, I think this is one of the challenges with advanced care planning is that, I think we try to apply it to everyone. I think there is a certain population of folks whose values stay pretty consistent in either direction. It’s like if I go to, I think Rebecca Sudore says, people change their mind. If you ask me what I’m going to have for dinner, I may change my mind.

Eric: However, if I’m a vegetarian, I’m probably not going to have a steak for dinner. You can probably guess that pretty good as far as the future decision. But for me, who’s an omnivore, it really depends what my mood is when I finish work, as far as what I’m going to pick up at the grocery store. So, those values are going to change a lot versus, again, if I had some more deep seated values about what I like, and don’t like for food.

Eric: And I think it’s the same thing when we think about advanced care planning. I think we just try to make it so everybody gets it, but it may not be right for everybody. Wow, everything is silent after that.

Liz: I completely agree.

Eric: Eric I don’t know about you, but I know what I’ve had for dinner. [laughter]

Liz: I mean, it’s interesting. I feel I would have a pretty good sense of what I would want given how much I’ve been doing this work, but then, was it you Alex that did a study on doctors and how they have aggressive care that we all say that we wouldn’t want?

Alex: Yeah. Doctors tend to get more of all types of care, including hospice and including the intensive care unit.

Eric: And nurses too. Isn’t there a follow-up study on nurses? So interactions with healthcare system.

Alex: And there are so many angles we could go here. Does video help? Angela Melendez work. Andrew was saying earlier, it’s hard to imagine this whole issue precedent autonomy. You can’t imagine that future state. Well here, rather than trying to describe it to you, I’m going to show it to you. Here’s what it looks like. So much more visceral. Is that taking it a step too far? The images you show, and the video you show going to bias somebody? Well, can’t you make the same argument about language? There was so many, so many subtleties and nuances that we don’t have time to go into right now, but this is an incredibly complex area that nobody’s going to solve. Liz?

Liz: Yeah. And I think that like one, a step in the right direction is trying to bring it more towards the person’s life world or their lived experience. And so a lot of these advanced directives and forms talk about, I wouldn’t want antibiotics or pressors or mechanical ventilation, but people might not know what that is. But if there are sort of advanced directors that say, I want to be able to eat ice cream in front of the television and that’s fine with me versus running a marathon, I think that’s getting closer to it because it’s sort of bringing it more towards like their lived experiences, but there’s still challenges with that as well.

Eric: No I feel like that’s our current, the vital talk training around how to have goals of care conversations. It’s all about figuring out what’s important to them, what they’re worried about in their current situation or future state, what they’re hope and for, and then making recommendations. And it’s certainly would be nice to have advanced directives that also are aligned with kind of how we currently think about goals of care conversations.

Alex: Yeah. But again, particularly challenging in dementia, which has such a long course that you will inevitably may making those decisions well in advance of the time in which you will be experiencing those conditions.

Andrew: One of the pieces I think has to be, and maybe some of us do this without an organized framework, but thinking about how to train even family member surrogates to know what they’re supposed to be doing, I certainly myself have invoked the idea of substituted judgment in a family meeting, and what we’re actually asking the family member to do is really hard. I’m just expecting them on the slide to be able to understand the question, what would your loved one want? That’s a lot in a difficult moment with no preparation or explanation of what that means.

Eric: I’m going to just mention, prepare for your care as one way to that. I’m just going to give a quick plug to Rebecca Sudore’s website that I really encourage our listeners to go to and check it out as one way to prepare family members.

Eric: My last question though, I want to go back to Andrew around the issues of conservators and guardians. After you got these results, is there one thing that you’ve done differently based on this results from a clinical perspective, or was this just an interesting finding?

Andrew: So I think that, I know that this is something that I’ve done differently, but I’ve started to, I think my blood pressure rises a little bit less when I see a patient with a conservator or a guardian. I don’t necessarily expect things to go a certain way. And in doing that, I’ve noticed more often that things are happening, or I am able to reach the conservators. So I think this bias that things are inevitably going to go down the path of high-intensity care. I started to question that.

Alex: And Liz, my last question is for you, there’s this saying, geography is destiny. But maybe if you had a T-shirt saying, what is you study, it’s more like culture is destiny. But culture change is hard. How do we change norms around care? Are there places where this has happened? What are the forces that push norms in one direction or another?

Liz: I mean, that’s the million dollar question that I think many of us are trying to figure out. I think that, there’s like norms within the hospital which I think we can change through, leadership actually, I think has a big influence on culture change. The people who are in it and the structures of support that are around the ethics committees, how supportive things like risk management are and how easy it is to do certain things. So, are there palliative care teams that can actually be there, or is there a culture where you say palliative care and people like what? That’s not right. So I think there are a lot of things that can be done within the institution to try to change this culture.

Liz: And I also think that we need to think about this on a more societal level, which of course requires cooperation of people beyond doctors and researchers. So thinking about how society thinks about end of life care, whether or not this is a welcomed conversation in the policy realm, even things like whether whether or not Hollywood has realistic depictions of CPR and that sort of thing.

Liz: So I think that there’s many ways that we can approach this. Of course there’s also things like death over dinner, what is it, death over dinner in [inaudible 00:46:43] cafes and those sorts of things. And there’s a lot of efforts out there to try to change that culture.

Eric: The one thing that gives me optimism is that we know we can change things cause like we mentioned feeding tube insertion in individuals with dementia, the rates of that have gone down significantly in the last 10 to 15 years. So I think that there are better things ahead. Yeah, Alex got it.

Alex: I got that.

Liz: Well, I was about to say that I think that the feeding tubes and choosing wisely campaigns have been really helpful with that. So really good education around feeding tubes has been helpful.

Eric: Well, I want to thank both of you for joining us today, but before we end, we got a little bit more better things up ahead.

Alex: (singing)

Eric: Liz and Andrew, big thank you for joining us for this podcast and thanks for really everything that you do. Really encourage our readers to check out their Jags articles. We’ll have linked to that in our show notes.

Liz: Thank you.

Andrew: Thank you.

Eric: And a big thank you to Archstone foundation for your continued support and all of our readers. Again, big, thank you for supporting our GeriPal podcast. If you have a moment, please rate us on your favorite podcasting app.

Alex: And look out for an opportunity to win a GeriPal face mask to be announced in the podcast in the next few weeks.

Eric: Thanks everybody. Good night.