Caring for the Unrepresented: A Podcast with Joe Dixon, Timothy Farrell, Yael Zweig

Eric 01:14

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 01:24

This is Alex Smith.

Eric 01:25

And Alex, who do we have with us today?

Alex 01:27

We’re delighted to welcome back Tim Farrell, who’s a geriatrician, associate chief for Age Friendly care at the University of Utah and chair of the American Geriatric Society Ethics Committee. Tim, welcome back to GeriPal.

Tim 01:40

Wonderful to be here. Thanks for having me.

Alex 01:42

And we’re delighted to welcome from my home state of Michigan, Joe Dixon, who’s a geriatrician and palliative care doc at Trinity Health. Joe, welcome to the GeriPal Podcast.

Joe 01:54

Thanks so much. Really excited to be here talking with you all.

Alex 01:57

Joe, which city are you joining from?

Joe 01:59

Ann Arbor.

Alex 02:00

Ann Arbor, where I went to undergrad. All right, and finally we have Yael Zweig, who is a geriatric nurse practitioner at NYU. Yael, welcome to GeriPal.

Yael 02:12

Thank you. I’m excited.

Eric 02:13

So we’ve got a lot to cover today. We’re going to be talking about the American Geriatric Society position statement on making medical treatment decisions.

Alex 02:21

For…

Eric 02:21

For unrepresented older adults. But before we go into that topic, Tim, I think you have a song request.

Tim 02:29

Yeah, it’s such an honor to make a song request. Thank you. You know, I could not think of a better song than All By Myself. Can you guys do that one?

Eric 02:39

Absolutely. Tim, there are multiple versions out there. What’s your favorite one?

Tim 02:44

I’m partial to the Eric Carmen version. I’m a little bit of a throwback kind of 70s 80s guy. So if you wouldn’t mind indulging that request, that’ll be great.

Alex 02:53

That’s great. And Eric Carmen died this past year. He died in 2024. And this song, interestingly, was…he admitted that it was inspired by the second movement of Rachmaninoff’s Second Piano Concerto, which is one of my favorite pieces of music. So I found that little bit of history interesting. This one’s a little high, so we’ll see what happens here. This could be exciting.

Alex 03:20

(singing)

Eric 04:31

Initially, when you said Eric Carmen, I thought you said Eric Cartman. So I thought we were going to have a very different tone on that one. (laughter)

Tim 04:51

That’s lovely. Thank you.

Alex 04:53

Lovely is the right term.

Eric 04:57

So I know I’m getting old in academia. When I was part of a published AGS position statement on unbefriended older adults many years ago, which has been replaced by obsolete. It’s obsolete. Like many things I do nowadays, obsolete. I’m wondering if maybe I’ll turn to Joe. Why come up with a new position statement on unbefriended older adults.

Joe 05:28

So, Eric, I would not say obsolete. I would say that it was an absolutely wonderful foundation on which to build. Tim being lead author on that statement. It was, you know, a very nice structure to work with. That being said, we saw a few reasons to go ahead and update the statement. Number one, that we’ll probably spend some time discussing. I don’t know if we want to spend too much time now or later, but was the terminology, you know, unbefriended? For a number of different reasons, we felt like we should update to unrepresented. And I’m happy to dive into those now.

Eric 06:10

Why is that?

Joe 06:11

Yeah, sure, sure. So I think the first reason that we saw and felt the opportunity was ripe for updating was that some of us had come across some anecdotal examples of patients expressing some offense to that terminology. I, for example, had one patient, I remember during my fellowship, I was in geriatrics clinic and had a very well read patient who came in and was reading a New York Times article, I think in the well section at one point. And I was asking this patient about if he had filled out an advanced directive.

And he told me, kind of with an eye roll, tongue in cheek, he’s like, well, I guess I’m one of those unbefri patients. And you know, again, it just really struck me and I could, I could see that there was some, some pain behind that, not only because of the terminology, but maybe what he felt, you know, values that reflected or at least the societal values that he felt like we were projecting upon him. So actually, in talking with Tim, Tim I know, has some other examples too, and I came across others later. And so it was, it was kind of impressive to kind of see the public response to that when they, when they heard the way that we were using terminology to describe our patients. And Tim, I don’t know if you want to talk.

Tim 07:37

I was going to say the terminology really came from the legal literature that we kind of adopted, I think in that 2017 statement. But I remember very clearly, not too long after the 2017 statement was published, our office administrative assistant said, hey Tim, you got a phone call from someone I didn’t recognized. And it was someone in the public who had read the 2017 statement and was sort of put off by the term unbefriended. And I think it got us all to thinking, gosh, we’re kind of missing something here, like we need to take another look.

And so when it kind of came time to have an opportunity to re up the position statement, I think we all felt it was a really good time to really kind of make a break. We also were seeing some trends in the literature. The literature was actually starting to use the term unrepresented a lot more than unbefriended. So we decided to come out and just sort of put out sort of an unequivocal statement that we really should be changing our terminology. One other thought too is just that because there’s so much variability in terminology, that variability makes it even harder to kind of advocate for this population when you don’t know what to call Them because then researchers don’t know what terms to use.

You can’t get uniformity in terms of people all thinking about this population kind of in a similar way. So we thought that really coalescing around this term, which is still difficult because sometimes you think of unrepresented is politically unrepresented or it is a challenging definition with three parts to it that’s really hard to capture with any one term. But we think unrepresented is an advance beyond the previous terminology.

Eric 09:14

And how would you define unrepresented? What are those three parts?

Tim 09:18

Yeah, so someone who, who kind of lacks the decision medical decision making capacity also lacks advanced completed advanced directive and lacks a surrogate decision maker.

Alex 09:31

So those three, what if they lack decision making capacity? They have an advanced directive, they lack a surrogate decision maker. But you worry that the advance directive does not provide enough guidance for the specific decision at Yael Jo, do you.

Tim 09:48

Want to take that one on?

Yael 09:50

I was just going to say that what I really like about the position statement in Table 1 is that it goes a step further. So it defines unrepresented as someone who lacks decisional capacity to provide informed consent to a particular medical treatment. And what I like about that is it’s forcing you to think not just about their capacity as a whole. Right. But we always talk about capacity being decision specific. So in your situation, explain one more time. So it was someone who has an.

Eric 10:18

Advanced directive, but the advance directive is too vague, which is.

Alex 10:23

Yeah, it’s like the advance directive I completed with my lawyer when we were doing like estate planning, which is if you were a vegetable, would you want to be kept alive? Yes or no?

Yael 10:34

More like a living will kind of a thing. Is the patient in your descriptor? Do they have a health care decision maker? Do they have a health care proxy?

Alex 10:41

No, they don’t. They have an advanced directive that specifies the type of they would care they would like to receive in a very specific situation, but not the situation at hand.

Yael 10:52

Yeah. And I think that’s where there’s so much state by state variability. Right. So like as an example, in New York State, if someone has no healthcare proxy that they’ve designated, there is a legal structure by which we can assign a surrogate, whereas other states don’t have that same structure. So part of this is to really advocate for there being more uniformity across every state.

Right. Because I mean, California is different. Right. But if you work in New York, you could be seeing patients in New Jersey and Connecticut. And so there’s complexity in Understanding how each state manages this.

Alex 11:24

So I guess somebody could still be unrepresented if they lack capacity for this specific decision. They have an advance directive. It doesn’t really apply to this situation. It doesn’t provide enough guidance for the clinicians to make decisions. They really need to look to somebody else. And there is nobody else identified in that advance directive. And there are no default pathways of family or friends to rely on and no known people who could potentially represent this person from within their inner circle. Is that fair?

Tim 11:59

Yeah. One of the things we talk about, we Talked about in 2017 version Also, this one is really sometimes there’s an assumption made very early on that there’s no one else. But what we advocate for is really obviously there can be time pressure. There’s no time, very little time to cast a broader NEPA when there is some time before an important decision to really try to think broadly, knowing that there can be conflicts of interest. So for example, you know, the director of the assisted living facility could be the person who knows the patient the best.

Yet that person could very well have a financial incentive to, you know, make a decision a certain way to keep the, the bed filled or what have you. So those types of relationships, clergy, non family members, we talk about, I think cohabitating unmarried couples. Right. There’s just categories that are, are speaking of represented, they’re not well represented in most states. Decision making hierarchies by default.

Eric 13:00

I also love that too, because even on our inpatient ballot of care consult service, whenever somebody says that they’re unrepresented or they don’t have a surrogate, we never believe that until we usually look up. And importantly, our social worker, Aunt Kelly, actually does a search and I would say 75% of the time she finds somebody maybe even higher than that, finds somebody who’s actually a surrogate. We do work in the va, so there’s a hierarchy at the va, so there’s federal law takes precedence here. But it’s incredibly important to do that little bit of extra work.

Alex 13:35

And I just want to clarify what you just said, Tim. Were you saying you started off by talking about somebody who might have conflicts of interest, like the person who runs the assisted living facility or something like that. And then you mentioned a whole string of other people, chaplains, et cetera. Were those people who you’re saying similarly might have some conflict, or were you saying that those are people who might serve as representatives who traditionally haven’t been.

Tim 14:01

Thought of as really, really the latter? Yeah, I think, I think really in Terms of the conflict, I was thinking more of people who had a really clear vested interest with a, you know, holding a bed or something like that, where the others would be people who had been associates of this person and could tell you something about really their values and preferences when they can’t, you know, when the patient cannot provide them for you on their own.

Eric 14:23

Yeah. All right, so we have people who don’t have capacity, they don’t have an advanced directive to guide us with a particular decision, and we have no surrogate to turn to in our default hierarchy. How big of a problem is this? Joe, I’m going to turn to you to start us off.

Joe 14:44

Yeah, and it’s a really tough question because we really cannot answer that definitively in any way. There’s some indications of how big the problem might be. And in fact, just kind of referring to the introduction of the paper, we start to kind of address that as best as we can. But there are some estimates out there, and the one that we have kind of on the second page of our paper is that the estimated range based off of papers that we reviewed was between on the low end, 70,000, and on the high end, 330,000. So, you know, widely differing estimates. It’s very, very hard to, you know, get an accurate estimation there.

You know, one thing that we do know demographically is that more and more people in the United States, I mean, we have an aging population. You know, baby boomer generation started to turn 65 and older back in 2011. And so we’re well within, you know, the time period of the baby boomers, you know, very large generational cohort becoming older adults now. And more and more of them are aging alone as well. You know, marriage rates have fallen. The amount of children that people have had has decreased, and many people do not have any children.

And we know that kind of a parallel thread with that. Is that loneliness, something that has been in, you know, medical literature more and more recently, is increasing along with those trends parallel to it? Not exactly explanatory, but most certainly kind of part of this fear of this rising cohort of people at risk of becoming unrepresented and those who are already unrepresented.

Alex 16:45

That really rings true with my clinical experience. And just over my short clinical lifetime, I feel like it’s gone from a once a month issue to like a once a week issue. And I know I do primarily inpatient work. Yael, I think you do inpatient work as well. Does that ring true to you?

Yael 17:03

Yeah, absolutely. I mean, I think also Like New York City has its own like, uniqueness in a lot of ways in terms of like people being able to live alone and also thinking about these non traditional surrogates where there’s like a lot of considerations you have to make about conflicts. Like, I’ve had people who’ve appointed their super as their healthcare decision makers and certainly, I mean, I feel like every, every time we talk about what’s changed in, in day to day life, we reflect on Covid. But like, I feel like that still can’t really be understated in terms of like people just losing social connections.

Tim 17:34

I’d say in the outpatient setting, something that I see a lot is sort of disconnected, kind of geographically separated families where people are almost like functionally unrepresented because there’s not someone there to make a decision in time or they’re not available. Maybe my favorite example of this is I had a patient in an assisted living facility whose son said he was only going to be available like on Tuesdays and Wednesdays if there was an emergency.

Right. Because of his work schedule or whatever. So that’s great if you have a crisis on those two days. But what about the other five days? So I have another patient who came to Utah to be near family and then the family recently all left and moved to Idaho. So she’s kind of stuck here all alone. So yes, they’re a phone call away. But sometimes when there’s a quick decision, sometimes even that’s too far.

Eric 18:24

Yael, I’m going to turn to you kind of boots on the ground incorporating this new position statement. Let’s say you have a 70 year old who comes in, doesn’t have capacity. Let’s say they’re in the ICU now on a ventilator. Their advanced directive. They have one. Yay. Yay. They have an advanced directive. It says if I have an irreversible condition, I would not want to be kept alive on machines. But you’re not sure, like, maybe they’re admitted for like copd. You’re not sure what to do in this particular case. But they also did not do the DPOA for healthcare form. So there’s no healthcare surrogate. What’s your next step?

Yael 19:06

Yeah, I mean, I just was kind of smiling as the two of you were talking about your social worker that, you know, can help find people. And the reality is like, that’s a very fortunate position to be in, right? To have a social worker who’s dedicated in many places. You know, a lot of us are in, well, resourced academic medical centers, but many people are not. And I know for us, we don’t have, like a designated social worker on our team. And so my kind of mantra always is, like, most people have people.

Right. So it’s sort of like, I know we’re working under the assumption that we’re talking about unrepresented, but I think the amount of effort that needs to go into finding people sometimes is, you know, quite extensive and also, like, really important. Right. So on the clinical side, people are really focused on how long do they have to be on the ventilator and managing that. But sometimes it’s just thinking about calling senior centers and local religious organizations and just thinking outside of the box to find someone who, even if they are not defined as a surrogate and whatever your state allows, but do they know the person?

It might be someone who’s unavailable or unwilling to be the decision maker, but they can at least guide an ethics committee or guide the clinician, whatever your organization policy is to say, like, this is what I know of this person and what their values might be. And that can really inform what your own institutional policy is. And the last thing is just to understand what your institutional policy is.

Eric 20:31

Yeah. And I wonder, you know, one of the things that could be really scary for people who may not be close family or even close family, maybe they’re like the ex wife, which we sometimes see, or an estranged son, or the landlord is like, what does this mean for me? Like, do I have to be responsible for all their care? Am I financially liable?

Yael 20:57

Exactly.

Eric 20:57

Am I legally liable?

Yael 20:59

Exactly.

Eric 21:00

How do you talk to surrogates about what you’re asking them to do?

Yael 21:05

Sometimes I think it’s helpful, like in whatever paperwork you have, but just to sit down and say, this is actually what it means. Right. Because if you. Like, I’m again, like, using New York state as an example. But like, if you look at a surrogate document, it walks you through step by step, the hierarchy of decision makers, but also, like, how that surrogate should be making decisions. And so I think it’s helpful to again, reflect on, again, like, there’s a whole separate piece about, like, the financial aspect.

Right. And that’s when we started talking about guardian and, and other things. But this is really medical decision making. And to say, like, it’s okay if you’re not comfortable being this person, but it helps me to know them to understand how to make medical decisions. So sometimes it can be helpful just to, like, speak to, like, what those person’s values are as they understand It.

Eric 21:55

Joe, Tim, any other recommendations? Like, one thing I always think about too is for a lot of these people, they may never have talked to them about what’s important to them or what they would want if they ended up in an ICU on a breathing machine. So this whole idea of substituted judgment. I’m going to put yourself in your shoes. Is usually not a thing for some of these people to be able to do, but they can help us with their underlying values, kind of best interests. What do they think would be best given this? So we’re not making this decision just as a healthcare institution. What do you all think?

Joe 22:33

Yeah, amen to that. I think it’s just so, so important to broadly explore those values and priorities of each patient before you start telling people what they should or should not do or guiding them. I so often see it flipped where people are telling people what they should or should not be doing before they know anything about the patient. And so just kind of having those exploratory conversations and you know, what, what was. What’s a day in the life like? What, you know, what did so and so like to do? Tell me, you know, just what, what.

I often ask what, what was a day in the life like? Just to get a sense of what, you know, somebody’s day looked like. You know, I don’t want to go back too much, but one of the really, really important things too that I think is often skipped and I wish that I could report this was not, but I see it so frequently as does this patient even have capacity in the first place? I mean, for, you know, a ventilated patient who’s in the ICU who is unable to engage whatsoever, you know, clearly that patient does not have capacity.

But, you know, it’s just crazy how many times I’ve seen it to where a patient’s hard of hearing and so they’re not even talking with the patient or there’s a language barrier plus hard of hearing or the patient just appears old.So actually really assessing capacity and being specific with your decision making I think is just so critically important and so often missed.

Eric 24:09

Don’t claim incapacity until you’ve gotten that pocket talker out an interpreter.

Yael 24:15

And actually assessing capacity with like an actual structured assessment, not just like that you think what you think or, you.

Eric 24:21

Know, do you have a good structured assessment that you use?

Yael 24:24

I’m partial to the apple bound criteria.

Eric 24:27

Great. I think there’s ace, the Assessment of Capacity evaluation form. You can Google it. It’s up there. Tim, Joe, any that you Use or you like to think about those.

Tim 24:39

And also there’s one called Med Sale, which I think is interesting because it poses some hypothetical situations, more for the outpatient setting. But I think it’s useful. I think there’s a scenario like, what would you do if someone came to the door and offered you, you know, a bunch of money? Obviously a scam, but if the patient’s in a situation where they’re like, susceptible to scams, then it kind of clues you in that maybe you should really seriously question, like their financial capacity, for example.

Eric 25:12

Yeah, so it’s interesting because that also brings up the question about you can have capacity for one thing, but.

Alex 25:18

Yeah, exactly.

Eric 25:19

You can have a capacity to decide on a surrogate, but you may not have the capacity to decide on the TAVR procedure that is being brought up.

Tim 25:29

That’s absolutely right. And I think my understanding is that the capacity make really basic decisions, like naming the person you wish to be your surrogate really is preserved even with fairly significant cognitive impairment. So it should always be presumed, even if you determine they lack capacity, it’s still best practice to say, let’s at least try to elicit this patient’s sense of things. Even if we don’t feel they have capacities, I think that information is still included in the totality of the decision making, if you will.

Eric 26:05

Okay, so we’re going to make sure that they actually don’t have capacity to be called unrepresented. We’re going to get those pocket talkers out, those interpreters out. We’re going to spend time with them, potentially going to do a structured evaluation.

Alex 26:18

And even if they’re intubated, it doesn’t mean that they lack capacity. We’ve had many patients, especially, you know, back in the day when I was in training, everybody who was intubated was completely sedated. That’s not as true anymore, fortunately. And so oftentimes you can work with patients who are intubated and find creative ways to ask yes, no questions to elicit responses that will help.

Yael 26:43

Speech language pathologists can be very like, helpful and underutilized. Everyone thinks about them for swallow, but in fact, their ability to aid communication can be like really a game changer as well.

Eric 26:53

So we’re going to make sure by capacity, we’re going to look for that advanced directive. We’re going to look for surrogates. Darn it, they don’t have any of those. Like, what should we do? Like, should we just, you know what, we have courts. Let’s just get them a guardian.

Joe 27:13

So not quite so I guess in this premise, it seems to have changed a little bit now. And just, just confirming, I want to make sure that I understand the question. So now nobody that we have to rely on, we don’t have any sort of surrogate whatsoever.

Eric 27:31

They are unrepresented, they’re in the ICU on a ventilator. I am not sure what to do. Maybe I’ll just make the decision myself what to do around. Should we keep them on the ventilator? Like, I’m an attending physician, I got nearly 20 years of experience, I probably know this person as good as anybody else right now. Or you know what, let’s just, you know, have our social workers start figuring out guardianship, get the courts involved.

Joe 27:58

I think so much of this would hinge too on, on the acuity of the situation. I mean, if somebody’s decompensating quickly, obviously we’re not going to, you know, take 30 days to pursue a guardian. So I guess maybe if we could get some clarification on this case. Is this like in a week we might need to consider a trach sort of thing?

Eric 28:17

Yeah, yeah. Trach and PEG versus withdrawal of life sustained treatments. Yeah, big decision.

Joe 28:25

Yeah, it is really tough. And assuming that we have a truly unrepresented patient and we’ve done our due diligence to try to find anybody out there, that becomes very, very tough. And it’s really just been a very small handful of times that I’ve truly come across anybody who is completely unrepresented. I wonder, you know, Tim or Yael, do you have any anecdotal examples on top of mind of where you have come across this and you know, maybe don’t have quite enough time to pursue a guardian and where you went or I’m curious, you know, your approaches, I.

Yael 29:08

Think, and this is where, you know, for this audience it’s hard. Right. I think you just have to know like your institutional approach and I think I could say for myself too, like being a real clinical provider, like what interests me and joining the AGS ethics committee, it’s really just like clinical experience with tough cases like this. And in my experience in discussing with ethics and ethics committees, not everyone will have someone to make decisions for them.

But again it’s, it’s doing your best even if it’s someone who’s not willing to make decision, but who can provide information to contribute. And there’s always going to be a difference. Right. In urgent versus like non urgent scenarios. And I like what the position statement says about guardianship. It really speaks to the challenges with guardianship and the difference in someone with long term expected, long term incapacity versus someone, why guardianship is really not recommended for someone.

The case, like you mentioned, where it’s like an acute episode with potential expectation for recovery, you don’t want to go to court. And then the process of having a guardian and then trying to have that guardian ultimately removed is a difficult one for a patient who’s seriously ill. Yeah.

Eric 30:22

So it takes like six months to get a guardian or conservator, which at this point would not be a really practical or feasible step.

Yael 30:29

Exactly.

Joe 30:30

And Eric, this is a really tough one. I think all of us are kind of, you know, a little stuck on what to do, as we always are in these circumstances. And I think what I’ve seen in the few cases of truly unrepresented patients to where we can not find anyone whatsoever to speak on their behalf is that, you know, unfortunately, you know, or fortunately, I don’t know how to best think about it because we just don’t know the patient’s values. I think the system is kind of tuned into just doing the most for the patient, assuming that they would want to continue.

Eric 31:11

Well, that said, I do like the position statement because it also brings up in these short term situations that we should be thinking about institutional committees. So like an ethics committee, like our VA process is very clear in, in places where we have these unrepresented individuals, that there is a clear process.

So if it’s an absolutely emergency, you got a physician in the med, you know, the health center medical director, if it’s urgent, like in this particular case, we get the ethics committee involved. And if it’s a longer term issue, which I think the position statement is bringing up, you know, you start thinking about guardianship, conservatorship, because you’re kind of going to need those for discharge anyways. Yale, does that sound right?

Yael 31:58

Yeah. And I like what the position statement says about the va. I mean, I think as we think about models that we want to support, I think a model that defines how you would make decisions in different scenarios is very practically useful. And of course, the people listening want to know, practically speaking, what do I do in that situation? The ethics committee at your institution is like always right. What you do, it’s just what happens next is really dependent so much on the state and the situation that you’re in in terms of like an emergent situation versus not.

And I like too, that even if, you know, sometimes you do have to pursue guardianship, you know, it is a last resort and sometimes that’s necessary. But I like how the position statement also speaks to like, that doesn’t mean that the guardian is not including the patient. Right. So even if the patient’s impaired, they still might refuse interventions. They still might have an opinion about interventions. And so I really appreciate that. I think it’s always a good learning point for people who, you know, are not necessarily doing this day to day.

Alex 33:01

Right. So that the guardian may think it’s in this patient’s best interests to initiate dialysis at this time. But when they come to take the patient to dialysis, they’re screaming and protesting and then what, are you going to tie them down every time you take them to dialysis? No, though they lack decision capacity to make the decision about that. That’s like ethically repugnant to have to do that. So those expressions should carry some weight.

I wonder if we should pivot to the outpatient setting, maybe talk about prevention. Yeah. So what does the position statement have to say about how do we keep from, keep this from happening? If you’re in the outpatient setting, Tim, and you’re seeing somebody in clinic and you’re worried that they’re heading towards a path where, you know, their chronic diseases are getting worse, we may have to make some decisions. And boy, I haven’t been able to work with them to find somebody to help them make a decision. What do I do?

Tim 33:57

Yeah, no, I think it kind of in some ways mirrors the thought process on the inpatient side. But I think the most important thing is just to, to recognize, to ask these types of questions. I think it’s. So you mentioned the burden of chronic multimorbidity and sort of flogging through the diabetes and the hypertension. Often that doesn’t leave a whole lot of time for other things. And so one of the points we make in the position statement is take advantage of the advance care planning codes to get reimbursed for these conversations.

The annual wellness visit, well, is a great time to check in because those are really tailor made opportunities. And ideally at other times too. Patient just got discharged from the hospital, just coming back from the skilled nursing facility. We’re very fortunate to have Medicare chronic care management, which is a wonderful resource that really is very goal driven, incorporating things like patient priorities, care and what matters most. And so that really sort of helps, I think, to get patients sort of primed to have this conversation at a point where you really can intervene and maybe be more likely to find those people who are surrounding Them who may have some insight before a catastrophe occurs.

Eric 35:23

And also any suggestions on how. Let’s say you ask, you know, is there anybody that you trust to help make decisions for you if you can’t? And they say, no, there’s no end with that. Or do you dive deeper?

Tim 35:35

No, I would go a little, a little further, you know, and maybe kind of take a page from Joe’s book when Joe said, you know, what does a good day look like for you? Or what, you know, what are the things that you value kind of go off. Because I think if they say no to that question, it behooves us to become a little more creative to think. Okay, so you said you wanted to stay living in your apartment for the next year. What do you think it would take to do that? And then maybe indirectly, they’ll start to tell you, well, here are the people I rely on to take me to my appointments. Here’s who sets up my medications. And from that conversation, you might be able to get some insight. And if you’re really fortunate, you do a home visit and really, really learn a lot more that way, too.

Eric 36:23

But, you know, Dr. Farrell, you’re the person that I know the most. You can just decide for me.

Tim 36:29

Yeah, you know, that’s a. That’s an interesting one. And I think. I think I would probably, in that case, have to have a really frank discussion about some of the limitations of clinicians sort of making. Making those types of consequential decisions on behalf of patients and say, you know, you really probably don’t want to go there. You may regard me highly as your physician, but I really don’t. You know, I see you for this 30 minute slice of time three times a year, but there’s 364 other days of the year that are not filled with interactions with me. They’re filled with other things in your life. So tell me about those other 363 days of the year.

Eric 37:12

Yeah, I do want to say, as an inpatient provider, what I often find helpful is when the patient, outpatient provider actually, you know, joins that conversation for these unrepresented people and shares what they know about that person. Man, is that helpful. Especially as we get into the ethics committee deliberations. Yael, sorry for interrupting.

Yael 37:33

Oh, no, no, not at all. I was just going to say also that I think that to your point about, like, what happens when the patient says, like, well, I would want you as my, as my healthcare provider to make decisions. Like, you can sort of reassure that fear to say, like, well, this is why I think you should think about who, you know, family or friend you should appoint. But I will still be available to you and I will support that person.

And then also if it’s someone who’s, let’s say in the hospital and you’re trying to encourage them to do a healthcare proxy and they’re someone who has like, you know, friends as family and they’re potentially estranged, it’s really important to say, like, if you don’t have capacity in the future and if you don’t appoint someone as your healthcare proxy, this is, for example, the surrogate law. And this is who would make decisions for you. And if you don’t want these people to make decisions, then this is why it’s really important to think about doing a health care proxy that they understand.

Eric 38:24

And it’s hard because the surrogate laws vary by state. And even with the state, like I’m in the va, I’m actually not in the state of California right now. It gets really confusing as we think about, not just for the individual patient, as we think about like health care systems as a whole, a society as a whole, what the US should be doing. Any thoughts about what we should be doing from a prevention standpoint in that regard?

Joe 38:52

There’s so much to say. I think we could take this so many directions. Probably everybody has, has different thoughts and different ways they could take this. I mean, I know that there are people out there, there’s, what is it, the Health Care Decision act, people who put together legislation for states to adopt and propose this legislation in 1993. It’s been revised in 2023. And so there are people out there kind of at least proposing kind of more legislation that could be more widely.

Eric 39:27

Adopted, a uniform act around these decisions or how we should be thinking about surrogates and.

Joe 39:34

Yeah, yeah. And you know, I suppose something like that could be adopted federally. But, but I think, you know, the way that this, this country often works is kind of things go state by state. And so, you know, things have been proposed to be adopted by states. And, and I think that that’s gotten some limited traction, but I think, you know, apart from that too, what we can do, you know, as individuals or health care institutions is separate from what states could do too.

I think it’s kind of multilayered and I think that one area in particular to intervene is patients going into long term care. I mean, it’s just such a high risk population in terms of advancing illness and disability, often cognitive in nature. And so to kind of use that as one intervention point, and I think Tim mentioned outpatient, which I think is probably a really great one too. I’ll hand to him if he wants to take that.

Tim 40:33

Yeah, I was going to say, I think, you know, we talked about kind of external to the health system, but within health systems, I think certainly things like social determinants of health screening that gets at a lot of these issues of loneliness, transportation. If you see someone, you know, they have no transportation, they’re single, they have food insecurity, those are important in themselves. But altogether they paint a picture of somebody who could be at risk of being unrepresented.

So kind of using that as a springboard to identify people and then I think taking advantage of the new CMS measure, the age friendly hospital measure. I think actually that’s a way to link the inpatient and the outpatient, because the inpatient measure domain 4 has a social vulnerability domain where you have to screen for social isolation. And I fully expect CMS will bring this measure into the outpatient world. So why not start building those systems that bridge inpatient and outpatient so we can kind of flag social isolation as sort of an initial warning sign to say, you know, let’s take the next step and say not only isolated, could they actually be at risk for being unrepresented in the future and what can we do about it now?

Eric 41:44

Yeah. I wonder, as we come to the end of this, if you had a little magic wand around prevention of unrepresented older adults, what would you use that magic wand on from a prevention standpoint? Yeah. Al, I’m going to turn to you first.

Yael 42:02

Yeah, that’s a good one. I mean, I think having longitudinal relationships with providers, like beyond just your own, you know, physician or practitioner, pa, whoever you’re seeing in the outpatient, but having a relationship with maybe it’s like a community health worker or a social worker, someone else who can help you beyond just like your medical needs and thinking about kind of your, the health of your, you know, the psychosocial system at large.

Eric 42:32

It’s great. Joe?

Joe 42:35

Oh, I’m just kind of thinking of this magic wand question again. So many things you could say. I would say that maybe a multipronged approach. Again I mentioned long term care, outpatient, inpatient, maybe even, you know, Medicare enrollment. All of these could be kind of, I don’t want to use them as, you know, quote harassment points, but points to repeatedly say to patients as they’re entering any of these care pathways to say, hey, look, who is your surrogate? Who is the person that you designate and kind of not dropping it until that is complete.

Eric 43:13

Great. Tim.

Tim 43:15

I’m an educator at heart. I always think about the workforce needed in healthcare to have these conversations. And if everyone, not just geriatricians, but if everyone can have as a procedure the ability to ask about what matters in a very empathetic and skilled way and to remember to build this into health systems to make it sort of automatic, I think that would be a real advance to help solve this problem.

Alex 43:43

Wouldn’t our system be better if instead of training our residents to ask about code status every time a patient’s admitted or in the outpatient setting, we train them to ask about what matters most and who could help doctors make decisions in the cases of incapacity. That would be so much better, right?

Eric 44:02

I guess Alex did his magic wand. I’m going to use a magic wand then. And my magic wand would be. And there is a place in the EHR where it’s dedicated, where you put that information so you don’t have to go hunting for it and spend 70 hours trying to find who this person’s surrogate is.

Yael 44:20

I would say for AGS 2025, because I’m going to be giving a presentation with a colleague about that specific issue. We did create something called an ACP navigator where it pulls in all the information and it can be accessed like in one area in the chart so you don’t have to chart dig.

Eric 44:40

Oh, that’s great. We have that at the VA too. A life sustaining treatment note. And for those who are interested, we’re going to have some on our show notes, some resources. I’ll put a link to the VA advanced care planning policy that has information on what to do around this because I do think it’s actually very helpful.

Alex 44:58

Did we get everybody’s magic wand?

Eric 45:00

I think we got everybody’s magic wand.

Alex 45:01

And some of us use a multi pronged approach.

Eric 45:05

Yeah, that’s good. Multiple magic wand. Because yeah. None of us want to be all by ourselves…

Alex 45:19

(singing)

Eric 46:28

Yael, Tim, Joe, thanks for joining us on this GeriPal podcast.

Tim 46:32

Thanks so much. This is great.

Joe 46:34

Yeah, thanks for inviting us. This has been a lot of fun.

Yael

Thank you.

Eric 46:37

And a big thank you for the position statement. Too. We’ll have a link to that in our show notes and thank you to all of our listeners for your continued support.

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Disclosures:
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