Tuesday, October 10, 2017

Gretchen Schwarze on Uncertainty, Scenario Planning, and American Pie

This week's GeriPal podcast features vascular surgeon, researcher, and bioethicist Gretchen Schwarze from the University of Wisconsin.  We talk with Gretchen about her recent NEJM paper titled, "Managing Uncertainty: Harnessing the power of scenario-planning."

What is scenario planning?  Does it sound like something a lawyer would talk to you about (a la "estate planning?")

Here is Dr. Schwarze introducing scenario planning in the podcast:
The idea behind scenario-planning, which is what our paper is about, is that it's not just about showing the limits of what's possible, but also the story that unfolds along the way. I agree with you, physicians hate this idea of uncertainty, because we don't want to be wrong, but we're not asking people to be certain. What we're asking people is to tell a story that's plausible and that shows that there are limits on what's possible to happen.

It's not just where you end up, but the different things that will happen along the way, because if I think about my patient in the ICU who is in respiratory failure after surgery, I don't know how that's gonna go. He might get better and he might not. But I have to tell you, if the respiratory failure gets better, I can tell a pretty solid story about that's gonna look like and how things are gonna be six months from now, a year from now, based on what I know about the patient. If the respiratory failure doesn't get better, I can tell a pretty good story about that as well.

We're not asking people to predict the future, but rather to tell a story that allows patients to understand a series of events that are likely to happen, once you've identified where there's uncertainty. 
That should tickle your fancy for more, so listen to the podcast, or read the transcript below.

Of note, Gretchen would have joined in singing American Pie, but the Skype connection was sadly not conducive to musical ensembles recorded over a distance.  You'll have to catch us together at a meeting for live rendition!


By: @AlexSmithMD


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Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: And Alex, who do we have as our guest today?

Alex: Today, we are joined via the Skype line from the University of Wisconsin, Gretchen Schwarze.

What? Eric just said something.

Eric: No. Did I?

Alex: He just gave me a look like, "What did you just say?"

Eric: No, I was looking at the dials.

Alex: Oh, I thought you were looking at me.

Eric: No, the dials.

Alex: We're going to start over.

Eric: The dials. We're going to start over.

Gretchen: I feel like I'm on Wayne's World.

Eric: Yeah, you are.

Alex: Maybe we should include that. That's not a bad intro. Should we just keep going? Let's keep going, okay.

Eric: So, Alex, let's recover from our poor intro. Gretchen, we start off all these podcasts with our special guests giving Alex a song to sing. Do you have a song for us today?

Gretchen: Alex, can you sing 'American Pie'?

Alex: Alright, we're gonna do a little 'American Pie'.

Alex sings ‘American Pie’ by Don McLean.

Oh, we're gonna have to stop there.

Eric: Oh, I'm guessing we'll do more of that at the end of this podcast.

Alex: At the end of the podcast. To finish that introduction, today we have Gretchen Schwarze, who's joining us from the University of Wisconsin, where she's a vascular surgeon, an associate professor of surgery, she's a bio-ethicist as well as a surgeon. She wrote a terrific piece in the New England Journal of Medicine that we're gonna talk to her about today, it's titled, 'Managing Uncertainty: Harnessing the power of scenario-planning'. Welcome to the GeriPal Podcast!

Eric: And I swear, I'm not giving Alex a dirty look right now, Gretchen.

Alex: There's no dirty looks. I can't read your looks, I've no idea. Because we have the video off, we have no idea what kind of funny faces Gretchen is making towards us right now.

Eric: We can imagine.

Gretchen: I'm just joining in.

Alex: So, let's see, how should we start this off. You start off this paper with an interesting quote from Peter Drucker, 'The greatest danger in times of turbulence is not the turbulence, it is to act with yesterday's logic'. What is that about?

Gretchen: What is this about? I think this idea of how we make decisions often forgets that, when people are making decisions in healthcare, they assume that tomorrow is gonna be much like the day before. We forget that when people come in sick, the fact that yesterday is not gonna be what happens in the future isn't really something we talk about. We use other types of language and I think people sort of still hold on to where they were before that, they need a frame shift, in order to really understand the context of what we're talking about.

Alex: I'm busy searching ... We have to cut this out, we're gonna cut this section-

Gretchen: Is there a lot of editing involved in this-

Alex: There's a lot of editing, there's so much editing-

Eric: Although, if it's funny, we're gonna keep it in.

Gretchen: I don't think people want an hour of me laughing.

Eric: We actually find the more humor in our podcasts, the better it is.

Alex: Isn't this already better than ... You also did a podcast with NEJM, right? For their author-

Gretchen: I have to say, the tone was really different-

Alex: Wasn't it different, see? There was no singing, there's no laughter-

Gretchen: No, but there was a lot of sweating on my part that was very nerve-racking doing that podcast.

Eric: Did you do this article as part of the podcast? I actually missed that.

Gretchen: Yeah, I mean, that's a really cool thing that NEJM does, they ask their authors to talk about their article, which is cool. But it's a pretty high-stakes thing, you get all about eight minutes, and it's not with somebody you know, it's with the editor of the journal. It feels very scary. And then it's over and you think, "Did I even say anything intelligible?"

Alex: Right. What I was looking up while we were kind of looking at each other was ... This quote also reminds me of a paper by Alvin Feinstein called 'The Chagrin Factor', that was published something like twenty or thirty years ago, probably more than that, where he writes that clinicians tend to act on the basis of their last mistake. They are acting with yesterday's information. Often, it's not just experience alone, but it's yesterday's bad experience in particular that guides them.

Gretchen: Yeah. I might say that this is similar and then also distinctly different in that we forget that patients with a lot of chronic illnesses have this life that they're living outside of the hospital. Someone that shows up with metastatic cancer and a new surgical problem, you think, "How could they not know this is going the wrong way?" And yet, they're living with it. We need to understand that they're coming at it with a different frame of reference, but also help them to understand this frame shift for them. That tomorrow is not gonna be like yesterday and so how do we strategically move forward in tomorrow without using the story of yesterday to misinform how the future is gonna move forward.

I actually think Joanne Lynn does the best with this notion about yesterday's logic. Her theory of it is that we have this mental model of health and wellness and that being healthy is being normal. And then you get an illness and then you're not normal and then medical care is used to fixed your illness and then you're normal again, which of course works great for appendicitis. But it doesn't work well at all for people with multiple chronic illnesses and it certainly doesn't work well for old, frail people with a surgical problem.

I do think that this idea of what was regular yesterday not being part of the future is a really important thing we need to get across in a way that people can understand it and not that we're banging them over the head with a big club about it.

Eric: I hear this every day working on the consult service too is, are we sure that they're not gonna get back to where they were yesterday, or that life is not gonna return to the way it was yesterday, rather than this new normal, it sounds like you're talking about. I heard it today, we never know. Yeah, he's in the ICU on multiple pressors getting CVVH and he just had a monstrous stroke, but maybe there's a small chance, I've been surprised before.

Gretchen: Yeah. There's a bunch of things you said there, Eric. The first is this idea of, when you talk about what this person is gonna get back to, all you're talking about is the outcome. You're not actually talking about the journey to that outcome. I would suggest that the story of how you get there, back to the way he was before, is as important as where you're gonna end up, because the story allows patients to understand what's involved. When I see there's a 5% chance of getting back home after this operation, I do not mean that there's a 5% chance of getting back home after this operation tomorrow exactly like you were yesterday.

The idea behind scenario-planning, which is what our paper is about, is that it's not just about showing the limits of what's possible, but also the story that unfolds along the way. I agree with you, physicians hate this idea of uncertainty, because we don't want to be wrong, but we're not asking people to be certain. What we're asking people is to tell a story that's plausible and that shows that there are limits on what's possible to happen.

It's not just where you end up, but the different things that will happen along the way, because if I think about my patient in the ICU who is in respiratory failure after surgery, I don't know how that's gonna go. He might get better and he might not. But I have to tell you, if the respiratory failure gets better, I can tell a pretty solid story about that's gonna look like and how things are gonna be six months from now, a year from now, based on what I know about the patient. If the respiratory failure doesn't get better, I can tell a pretty good story about that as well.

We're not asking people to predict the future, but rather to tell a story that allows patients to understand a series of events that are likely to happen, once you've identified where there's uncertainty. Uncertainty, at least for my patients, post-op in the unit is often about their respiratory failure.

Alex: These are post-op patients, right?

Gretchen: The storytelling we like to do is before surgery, because surgeons are all about this decision of 'should we operate or should we not operate'. In our mind, we liked the idea of using scenario-planning before surgery, so we can use it to help us decide whether to do surgery or not do surgery, or consider some other strategy. But you could imagine that you could use scenario-planning with a patient in the ICU where there isn't a decision to be made. Where you just start off with, "Your father was admitted to the ICU yesterday with a severe pneumonia, I'm not sure how things are gonna go. Let me tell you what might happen in the best-case scenario." And in the best-case scenario, you would say, "This respiratory failure gets better, but let me tell you what that looks like, if the respiratory failure gets better." In the worst-case scenario, it's something very different than that, the respiratory failure doesn't get better, but there's all this other stuff that goes along with it, not just the outcome.

Eric: Do you also then think about actually doing a more specific prediction, like which of those scenarios is more likely?

Gretchen: Yeah. I think that's actually a very nice way to use it, that's not how Peter Drucker and Pierre Wack, the economists we talk about in our paper use it, they're just trying to find a bunch of plausible scenarios. But I think for healthcare decision-making, it's really helpful to have a best and a worst and then to say, "Given what I know about you, given that before your dad came into the hospital, he was using a walker and he needed oxygen during the day and his kidneys were working, but not all that great, this is what I think is most likely. This is how I see things going."

So it doesn't you require to say, "I know exactly what's gonna happen," but it does help generate multiple frames of reference that allow people to understand the consequences of the context, meaning patients' health before things and then, how little events along the way determine the outcome.

Alex: Maybe for our listeners, some have not actually read the article, scenario planning. That doesn't sound very medicine-y. And you mention that it may have come from ... Is it economics literature?

Gretchen: Yeah. This is really funny, I think all of us spend a lot of time looking for better predictive models and nomograms. In surgery, we do this all the time, we love our risk calculator. I think the kind of information that we tell patients is all in this probabilistic language. Interestingly, in a lot of businesses they don't actually use that raw probabilistic language. For years, the economists were sort of held out as these people who were constantly misleading the managers.

If you have a business, like Shell Oil is the business where they started this, and so the economists say, "There's a 50% chance that there'll be a coup in Iran and there's an 80% chance that we'll find oil in blah blah blah." And what they did is, they took all of this probabilistic information and generated possible stories of what might happen, based on this information.

It's funny to me that this happens a lot in business. In fact, I was giving a lecture two weeks ago. I was giving the Memorial Art Lucas Lecture at Wash U, and Art's daughter Kate was sitting in the audience, and she said, "You know what? I work for the National Security Administration, you're doing the security planning. This is how we tell the government, how to use the data that we're giving them. We don't just say, 'There's a 50% chance that there's gonna be an attack in New York'. We get all the data together and then generate these scenarios, so that the people who are using this information can think strategically and plan ahead".

So it's kind of funny to me that this is not an unfamiliar thing in other disciplines and it is surprising to me that we haven't used it in healthcare, because you would think that physicians are kind of like the economists here. We're the people with this information and the economists are talking to managers, but we're talking with patients, so we need to help them interpret this information in a way that's usable. Instead, we just plop a whole bunch of statistics on them.

Eric: Are there certain fundamentals that you're supposed to do in scenario planning?

Gretchen: That's a hard one, it has this sort of blessing and a curse feeling to it, where it seems really easy to be like, "In the best-case scenario...", but actually generating these scenarios can be really challenging. And if you look at what they do in business, the economists spend like five months with loads and loads and loads of data, trying to generate a story, and here you are in the ICU with a little bit of data trying to tell the right story.

The way I think about it is, I mean I do think that having some sort of sign post with best, worst and most likely, is very helpful. And then I think about, what would it look like if everything went well? And if I know that I have somebody in front of me who's on a ventilator, who doesn't look like they're gonna get off the ventilator for a few days, I just start there. What does that story look like? Because I've seen a lot of people on a ventilator get better and I know what that's like, but they're not home the next day. So I use the stories from my experience to generate this best-case scenario, knowing that where the uncertainty is, is whether their respiratory failure is gonna get better. Does that make sense, it's really hard to explain.

Alex: No, it's great. It's almost like explaining this scenario using as few numbers as possible, right?

Gretchen: Yeah. We don't love using the numbers and a lot of people will be like, "Oh, I do that all the time, I just told some lady in the office that the best-case scenario is, she has a 75% chance of not getting off the operating table." That's not it.

Alex: 75% of not getting off the operating table. I can't even straighten that out.

Eric: I know you've talked to a lot of physicians about that and especially in academics, we don't even like qualitative data, we want quantitative data. How do people accept the idea of storytelling or interpreting data for patients?

Gretchen: The bottom line is that someone has to interpret the data and it would be nice if the people who... I have lots of patients that I say, "You have a 50% chance of dying from this operation, and I'll be honest with you, I have a real sense of what that looks like." And I have a sense of what that looks like when they don't die and I have a sense of what that looks like when they do die.

If I'm saying to the patient, "You have a 50% chance of dying in the operating room," and the patient, in turn, interprets that as, "I have a 50% chance of going home tomorrow after this operation," then we've really failed the patient to not interpret these statistics in a way that has meaning for them.

I hear what you're saying, everybody loves the numbers and we just need to be more precise-

Alex: They're comforting.

Gretchen: No, I think that the idea behind the numbers is that they're data-driven and it keeps us all on the same page so we all tell the same thing. But that's not what this does. This is something that allows us to say, "I have these numbers and I know these numbers, but I want to help you use these numbers. So let me help you use these numbers by interpreting them for you."

Now, conveniently, that's what the damn economists do, they're interpreting that data for the managers. I don't know why everybody's like, "Oh, this is so squishy, feely," I don't know any happy, squishy, feely economists, they are a hard bunch of people.

Eric: And I could also imagine that the worst-case scenario is actually not the 50% chance of dying in the operating room, because you don't see a lot of people actually dying in the operating room, do you?

Gretchen: Yeah, and actually, people like that outcome. Patients don't think that that's such a bad outcome, because you go to sleep and never wake up, but honestly, when I see that the surgery has a 50% mortality, I do not mean that people die in the operating room, I've been a surgeon for twenty years, I've seen four intra-operative deaths. I mean that you sit in the ICU for three weeks after you operation and we do all this stuff to you and you never wake up and finally, your family says, this is not okay and we withdraw life-sustaining treatments. That's what it means to have a 50% mortality, if they die.

Honestly, what it means to survive it, is a lot of stuff.

Eric: And that's what I really liked about your article, it's really talking about what the process looks like to get to the outcome that they're potentially hoping for, their goals, what's important to them.

Gretchen: I also think it keeps us from having to be right about the outcome. That it's the experience along the way that allow patients in the future to understand where you might be.

I think a lot of patients will say, "That best-case scenario is fine with me, I am willing to move forward and do this operation for that best-case scenario." But I think what strategy does, at least for surgical patients is, if things don't go as well as we hope for, they might recognize earlier on that, most likely, worst-case is where we're headed and say, "That was never okay with him. We talked about what that story looked like ahead of time and he was pretty clear that's not okay."

It does do this forecasting thing that allows us to get a little more insight about the patients themselves, because they can talk with you about those stories and how they feel about those stories, but it also allows us to recognize later on, when things aren't heading the way we had wanted to.

I worry, particularly with older patients ... You operate on them and they don't do well, but they don't do well right away. They just have a bump after a bump after a bump. It's like, "We just need to fix the pneumonia, we just need to fix the UTI, we just need to fix the bleeding stomach," and I think the families take a long time to understand that that is sliding very slowly and agonizingly towards an outcome the patient didn't want. Because they always assume that, and this isn't unreasonable because I think we help them assume this, that we can fix the pneumonia and they're gonna be right where they were before the pneumonia happened.

Eric: How do you handle scenario planning, if you're using best-case/ worst-case, you can talk about if, we go ahead with surgery what's the best-case/ worst-case. Do you also present the best-case/ worst-case of an alternative, of what if we didn't do surgery?

Gretchen: Yeah. For surgeons, every time we enter a room, we're like, surgery/ not surgery, surgery/ not surgery. That is our MO in the world. At least, when I talk to surgeons about it, we spend a lot of time thinking about surgery or another treatment strategy. And that other treatment strategy can be actually very broadly perceived from best medical management, or some operation that is not so complex, but potentially can palliate symptoms, it can be comfort-focused palliative care. I do like the idea that it shows two possible treatment strategies and then stories that go along with the two treatment strategies. I don't think it has to be done that way, but at least for surgeons, who are always thinking about a treatment decision, that's a helpful way to think it through.

Alex: How does this idea of scenario planning mesh with your prior qualitative work, where you described this idea of this surgical compact between surgeons and patients, that, if you agree to the surgery, you're agreeing to this entire post-operative course, whatever you say be damned, kind of like an Ulysses' contract, 'tie me to the mast, I want to hear the sirens, ignore whatever I have to say'.

Gretchen: I might not describe it quite that way, Alex.

Alex: It's so much more poetic when you describe it that way.

Eric: Wasn't it like a covenant?

Gretchen: That's a very long and complicated discussion, and I do think that ... We've spent a ton of time listening to surgeons talk to patients before major high-stakes surgical decisions and I certainly understand how this conflict in the ICU happens after surgery, because the surgeon has actually spent a lot of time really going through all of these terrible things that could happen with surgery, and the patient says, "Yeah, I want to do it." And so the surgeon misunderstands that as, "Oh, the patient's committed to these other things that would happen after surgery, like intubation and all of these other possible risks that I disclosed, the patient's up for it."

I actually don't think that's how the patient conceives of it, the patient thinks, "It's a risk, but driving in my car is a risk and it's not gonna happen." It's almost like a misunderstanding about what's possible after surgery and how tolerable that is for the patient and whether the patient is really willing to trade off some very burdensome treatment in order to reach a certain goal.

Those conflicts show up in the ICU, because the surgeon thinks that the patient had a specific goal and that that goal is still possible, and by agreeing to all of these risks, the patient has said, "Yeah, that burdensome treatment is okay with me as well." You could imagine that, if I told you a story about what happened when everything went well, and that story included a week and a half in the ICU, which is not unusual for some people who come in really sick and the patient said, "That's not okay with me," that the surgeon might say, "Huh. I can't get yo to this outcome without that. So maybe we need to rethink whether surgery is right for you."

Eric: And the sorts of surgery where scenario planning is most applicable are vascular surgery, because older patients are often multi-morbidity, frailty, dementia, disability, at-risk, also trauma surgery, any other areas?

Gretchen: Yeah, there is nothing that says it can't be done in other areas. As a researcher, I like the idea of checking it out, before we say, "Go do it."

We taught 25 surgeons here at AW to use scenario planning and our best-case/ worst-case communication tool, and they were cardiac surgeons, vascular surgeons, thoracic surgeons, acute care general surgery surgeons and then we had them do it with patients in our study. We had twenty patients enrolled in our study and they had all of those illnesses that you just described. We had patients facing TAVR, we had CABG aneurysms, a lot of frail, older people with acute abdominal processes, like colonic obstruction, that kind of thing.

We actually went to the patients' families after their decision, we went to their house to talk to them about how they liked best-case/ worst-case, and literally, people would just go and pull the graphic aid that it comes with, out of their drawer and say, "You know what, I was in the hospital, the surgeon used this and it really helped us."

Eric: Wow.

Alex: Wow.

Gretchen: Even Father Andrew, who is in this New England Journal article ... Andrew is not actually his actual name, we changed it, but he was a priest and his niece was very kind to interview with us three months after he died and she said that she took the graphic aid on a trip around the country to see family. She said she used the graphic aid to explain to them, why they made the decisions that they did about how to take care of him when he was so sick.

Eric: When we're thinking about scenario planning, best-case/ worst-case, I know you have a great video online, too, that we can see our best-case/ worst-case scenario and we can link to that, is that right? Is that online?

Gretchen: Yeah! If you just google best-case/ worst-case whiteboard video, it comes right up.

Eric: Great. Would you suggest that we use graphic aids in addition to verbal storytelling?

Gretchen: I teach it with a graphic aid and, invariably, I find myself in a room without a graphic aid using my hands, lifting up high, like, "This is what the best case is." Worst case is like down by my knees.

It's easier with a graphic aid, but I actually think patients really love having something to hold onto. And we taught it so that you jot down a few little notes next to best and worst and most likely, so that they can use it to remember things later. I think patients and families really love having this thing to hold onto, because it allows them to use the stories to communicate with other people, but also to communicate amongst themselves. It provides a really nice strategy to give them good recall about what happened.

I like the graphic aid a ton, I recognize how it can be a little tedious, but I think that the patients and families really get a lot out of it.

Eric: When I first heard about your best-case/ worst-case scenario, I started using it on palliative care consults. I actually think it's a very helpful framework. I never knew the term 'scenario planning' and that's what I was practicing. It's something that I want to continue to work on and actually do more, because I think that the storytelling part actually really resonates with patients, and also residents.

When I talk to residents about thinking about a case, what's the best case, what's the worst case, it helps them figure out, "Oh yeah, this is why we would do this, or this is why we wouldn't do this."

Alex: And they do have information to share with patients, they realize. The residents. Often they say, "I'm in a data-free zone, I don't know, there's too much uncertainty here."

Gretchen: Right. It helps us put boundaries around the limits of what's possible. I think people who are trained in palliative care can do this very naturally without much training at all, though it does require some sort of thinking about what it means to create a good story.

My colleague Toby Campbell here, he was just doing this in his office for patients with lung cancer, talking to them about chemotherapy. Then the two of us got together and were like, "Wow, we should try to find a way to structure this, that we can teach it to other people." It'd be really nice to take a syringe full of Eric Widera and Alex Smith and Toby Campbell and just inject it into everybody, but you can't.

Eric: That wouldn't be nice. Terrible idea.

Gretchen: This is a strategy that I think people can learn and I would say that some of the surgeons in my city, they weren't fabulous communicators, but they did a really good job with this. They really did things that I'm like ... I audio-recorded them and I want to just lift it up and show my mom, like, "Look what we did! Look at this boy, he's really getting it."

That's exciting to me, that we can develop the framework that other people could use, who aren't just naturally talented at doing this.

Eric: Maybe for me and our listeners, are there a couple of key parts of storytelling that we should keep in mind when we're doing a best-case/ worst-case scenario or ... Now I'm blanking out ... Scenario planning.

Gretchen: Yeah. Best and worst case you can start off with this idea of, what would it look like if everything went well. And worst case is sort of, what would it look like if everything went poorly. I actually think, most likely is probably the piece, where you really have to use sort of all of your clinical expertise to try and get that story right, which doesn't mean anybody is gonna hold you to the story, but that's probably the one that really requires some real tailoring to the patient in front of you.

I always think about, "Where are we now? What does the treatment look like, what does this thing we're proposing look like?" And then think through, "What does it look like in the short term? Where are they? What's their quality of life? What other therapies that could be burdensome are gonna come up?" And then follow it up at the end of this story with some sort of long-term statement about it, like, "Given who you are and given that you were just barely making it at home and you had bad COPB and you have this metastatic cancer, I really have a hard time seeing you get back to home. I think what's most likely, is that you'll be in a nursing home and what's most like is that the cancer is gonna catch up with you and we've got months."

You guys in palliative care are so good at giving estimates about survival that aren't so down and precise that people are like, "You're wrong." But I like this sort of 'days-months, months-years, years-years' kind of thing that you can use with most likely. Sort of really try to embed some prognostic information into the story.

Eric: And I really like how it forces us to remember, it's not just the outcome, best case he lives, worst case he dies. It's everything that goes along with that, the process.

Gretchen: Right. Although, that's how my husband conceives the best-case/ worst-case. He's a transplant surgeon, he's like, "Best case you live, worst case you die." "Oh, awesome!"

Alex: It's easy, I learned it. I'm a master at this technique!

Eric: Zero or one.

Alex: Zero or one, right.

Eric: We don't need stories! That's data, right there.

Alright, Alex, how about you finish us off. Gretchen, thanks for joining us today.

Alex: Thank you so much, Gretchen, that was terrific.

Gretchen: Thanks, guys. What a blast!

Alex: We pick up where we left of.

Alex sings ‘American Pie’ by Don McLean.

Produced By: Eric Widera
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Monday, September 25, 2017

Palliative Wound Care: A New Frontier

By Jeffrey M. Levine MD, AGSF, CWS-P

I recently completed the revised chapter on pressure injuries for the Geriatrics Review Syllabus (GRS-10) which will be coming out shortly.  Part of the content addressed the topic of palliative care for chronic wounds.  In my text I claimed that a palliative approach can reduce suffering, improve quality of life, and decrease health care costs by eliminating expensive and/or painful procedures and treatments, but found little corroborating evidence. In the process of revision I did an informal poll of colleagues from coast to coast, and found nobody addressing palliative care for wounds.  Research in this area thus presents a wide open career opportunity for a young palliative care specialist.  

Those of us who care for patients with pressure ulcers know that some wounds will not heal, and cure is an unrealistic goal.  Pressure ulcers can also herald the terminal stage of illness.  As the number of people living with chronic illness soars, it is increasingly recognized that there are limited benefits of curative treatment. This is where palliative care offers an alternative to aggressive wound healing interventions by changing to the focus to wound stabilization, symptom management and patient well-being.

Wound-healing strategies incorporate turning schedules, pressure redistribution devices, nutritional support, pain management, a variety of dressings, and an array of surgical procedures. Some patients, because of underlying illness or personal preference, cannot tolerate one or more of these measures. For example, turning and positioning is painful for patients with metastatic cancer. Repositioning may be restricted in patients with severe contractures, morbid obesity, or life support modalities. Patients with lung disease, congestive heart failure, vent support, or tube feedings require the head of their bed elevated which restricts mobility and increases pressure and shear forces on the sacral area. Negative Pressure Wound Therapy (NPWT) for persons with malnutrition has the risk of further decreasing serum albumin which increases third spacing, which interrupts oxygen and nutrient delivery and impedes healing. 

Nonetheless, palliative concepts have not yet penetrated deeply into the wound care world. Surgical procedures such sharp bedside debridements, operative interventions with attempted flap reconstructions, and skin grafts are too often performed when there is little to no chance of healing.  Operative debridements are often performed without communicating to families that there is little realistic chance of healing.  I know of numerous patients on hospice who received one or more sharp debridements only days before expiring.  

The wound care market is a rapidly growing sector currently worth in excess of $18 billion. There is a confusing array of wound care products with proof of efficacy lacking even in healthier populations. Negative Pressure Wound Therapy (NPWT) is an expensive cure-oriented treatment that is frequently overused in situations where treatment is hopeless. This is an opportunity to prove that aggressive intervention is often futile, and palliative care alternatives can cut down on unnecessary pain, suffering, and healthcare expenditures.  

Palliative wound care involves symptom control with stabilization of existing wounds while preventing additional wounds and infectious complications.  While many modalities are currently in use, the palliative formulary needs to be explored for optimum efficacy and cost savings.  More research is needed to define when a wound is not expected to heal, and in which clinical situations palliative care needs to be offered.  Surgical subspecialties as well as palliative care specialists require training to recognize when procedures are medically futile, and when realistic patient and family education needs to be implemented.  

One strategy I would like to see explored is co-management of chronic wounds, with geriatricians or palliative care specialists collaborating with the surgical team.  This model has proven successful in hip fractures and cancer, and could easily and effectively be implemented with chronic wounds.  

Medical science and technology have come a long way, yet there are many clinical situations when cure is not a realistic goal. Palliative care offers an alternative that focuses on controlling symptoms while promoting the best quality of life for both the patient and family.  Partnering with the patient and family to take a palliative approach to chronic wounds rather than an aggressive plan for healing can potentially reduce suffering, avert painful procedures, and reduce re-hospitalizations. Although this makes intuitive sense, research is required to take this concept to the next level. 

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Tuesday, September 12, 2017

Songs that Inspire, Move, or Make Us Think about Geriatrics or Palliative Care

Back in 2009, Pallimed created one of my favorite podcast posts titled "Top 10 Contemporary Palliative Care Songs".  In it, they made a list of "contemporary" songs from many different genres that have palliative themes.   For todays podcast, we aim to update this list with songs that inspire, move, or make us think about geriatrics or palliative care.

As with the Pallimed post, this is all personal preference.   So we would love to hear from you.  What one song would you have included in this podcast if you were sitting in the studio?  Put it in the comments section of this post!

Listen to GeriPal Podcasts on:

by: Eric Widera (@ewidera)


We don't have a transcript for the podcast today, but here is the list of songs picked by our studio audience:

Alex Smith: Dennis Kamakahi - Wahine 'Ilikea

Jen Olenik: Let It Be by the Penn Med Ultrasounds

Leah Witt: Legacy by JAY-Z 

Emily Taplin: Nick of Time by Bonnie Raitt

Kai RomeroFlorence + The Machine - Stand By Me (yes, not the Ben E King version)

Anne Kelly: 
Warren Zevon - Keep Me In Your Heart

Eric Widera:  I picked I Don't Want to Die in the Hospital from Conor Oberst and the Mystic Valley band.  I first heart it when I attended a great session at the 2008 AAHPM meeting titled Palliative Themes in Music: An Educational and Self-Care Exercise where I fell in love with it.

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Monday, September 11, 2017

Long Term Aspirin and the Risk of Bleeding Complications in Older Adults

by: Allen Tong MD

As a geriatrician, removing unneeded or inappropriate medications from a patient’s drug list is something that brings me a lot of professional satisfaction.  Reducing drug burden, adverse drug effects or drug-drug interactions, is an important aspect of providing high quality care.  Proton pump inhibitors (PPIs), often prescribed for “stomach protection” is a common target for me to consider de-prescribing.  They are often continued indefinitely when a 4-8 week course is more appropriate.  But a recent study published in the Lancet (1), puts a new twist into the risk-benefit analysis of long term PPI therapy, specifically as it relates to preventing upper gastrointestinal bleeds in patients on anti-platelet blood thinners such as aspirin or clopidogrel (brand name Plavix).


Anti-platelet therapies are commonly prescribed for primary and secondary prevention of vascular disease (heart attack, stroke, peripheral arterial disease).  But the long term bleeding risks of these drugs are lacking, especially in older adults.  Most trials were done in younger individuals, age less than 75, and for follow-up periods between 2 and 4 years.  The potential long term benefit of PPIs or histamine receptor antagonists (H2 blockers) to prevent bleeding has also not been studied fully in older adults.  Researchers tried to address this void in the geriatric literature.  

The Study:

This was a prospective cohort study of 3166 patients who were started or continued on anti-platelet therapy after transient ischemic attacks, ischemic strokes or myocardial infarctions.  The majority of patients (>94%) were on aspirin monotherapy.  Half of the patients (n=1582) were aged 75 and older and 18% (n=577) were 85 and older.  Patient taking anticoagulants were excluded.  Researchers reported bleeding events as well as functional outcomes.  Study participants were followed for 10 years.

Of note, to try and capture a more accurate tally of bleeding events, the researchers used not only administrative coding data, which is what the majority of previous trials used, but also hospital admission, primary care and blood transfusion records.


405 bleeding events occurred during 13,509 patient years of follow-up.  46% (n=187) were considered major bleeds.  40% (n=162) were upper gastrointestinal bleeds.  The study focused specifically on upper gastrointestinal bleeds as they could potentially be reduced with PPIs or H2 blockers.  After their vascular event, 24% of patients on anti-platelet therapy were also on either a PPI or H2 blocker.

Most notable from a geriatric standpoint - the annual risk for major and fatal bleeding increased steeply with age, after age 75 (figure 1).  

Figure 1

Compared with younger patients, those aged 75 and older were more likely to experience nonfatal major bleeds (HR 2.62), fatal bleeds (HR 5.53) and disabling bleeds (HR 7.6). At age 85, the annual risk of major bleeding reached 4.1%.

And from the additional data in the supplementary appendix, the time to harm, for ASA to cause bleeding, is almost immediate and again, most pronounced in older adults (figure 2).

Figure 2: Age specific risks of upper gastrointestinal bleeding events
The authors concluded that the risk of major bleeding attributable to antiplatelet therapy approached the risk of ischemic events protected in adults aged 75 and older and was even more pronounced in those aged 85 and older.

And specifically for upper gastrointestinal bleeds, the long term risk of disabling or fatal bleed was 10x higher for older adults versus younger (HR 10.26).  53% of older adults (31of 59 patients) had new or sustained disability after upper gastrointestinal bleed vs 14% (3 of 21) in younger adults.  And the number of disabling or fatal upper gastrointestinal bleeds substantially outnumbered disabling or fatal intracranial bleeds (n=45 vs n=18).

The researchers then calculated the number needed to treat (NNT) to prevent one disabling or fatal upper gastrointestinal bleed after 5 years of PPI therapy.  Assuming PPIs reduce the risk of upper gastrointestinal bleed by 74%, a NNT of 338 was calculated for younger adults whereas a NNT of 39 was calculated for patients aged 75-84 and 25 for patients aged 85 and older.

The Take Home

The bleeding risks of long term antiplatelet therapy in older adults has been understudied and underappreciated.  This study provides some real numbers to this risk-benefit analysis, at least for ASA monotherapy in the secondary prevention of vascular events. Through a prospective study, the authors reasonably conclude that the risk of bleeding is significantly increased in adults aged 75 and older and is much more likely to lead to both disability and death.  Disability associated with upper gastrointestinal bleeds is another understudied and underappreciated area of the geriatric literature which this study highlights.  The authors conclude with encouraging co-prescription of PPIs for older adults on long term anti-platelet therapy, calculating a NNT of 39 for adults aged 75-84 and 25 for those 85 and older.

As noted in the accompanying editorial (2), clinicians “obsess" over the balance between the risks and benefits of starting anti coagulation for patients with newly diagnosed atrial fibrillation, using risk calculators such as CHADS2-Vasc and HAS-BLED.   Perhaps we should be equally obsessive about evaluating this balance in our older adult population on long term ASA therapy.

What do you think?  Does this study change your clinical practice?  How do you determine when to start or stop ASA in older adults?  What about PPIs/H2 blockers?


1. Li L et al.  Age-specific risks, severity, time course, and outcome of bleeding on long-term antiplatelet treatment after vascular events: A population-based cohort study.  Lancet 2017 July 29.
2. Diener, Hans-Christopher.  Preventing major gastrointestinal bleeding in elderly patients.  Lancet 2017 July 29.

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Wednesday, September 6, 2017

Sarah Hooper on Medical Legal Practice Clinics for Seniors

On this weeks podcast, we have Sarah Hooper, J.D., the Executive Director of the UCSF/UC Hastings Consortium on Law, Science and Health Policy, an interprofessional partnerships in education, research, and clinical training and service.  

We talk with Sarah about her work creating the Medical-Legal Partnership for Seniors Clinic (MLPS) in which law students and faculty provide free legal assistance to low-income older patients at the UCSF Medical Center and at the San Francisco VA.

Here is a short excerpt of the podcast in which Sarah talks about the state of affairs for MLPS in the realm of geriatrics and palliative care:
"There are almost 400 medical legal partnerships around the country now, at least one in almost every state. The vast majority of them are focused on kids and families, which is incredibly, incredibly important; but I think that because of the demographic need and just the nature of the complex needs that people have in geriatrics and palliative care, there should be more of us. The medical legal partnership for seniors is one of less than a handful of these models around the country, but they are out there. We're trying to grow."

If you are interested in diving down deeper into the subject, here are some of the links to resources we mentioned during the podcast:
by: Eric Widera (@ewidera)

Listen to GeriPal Podcasts on:


Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: Alex, who's in the studio with us today?

Alex: In the studio today, we have Sarah Hooper, who is Executive Director of the UCSF/UC Hastings Consortium on Law, Science, and…

Sarah: Health Policy.

Alex: Health Policy!

Sarah: We went for brevity. Thanks for having me.

Eric: Really looking forward to talk more about all three of those things, but before we do, do you have a song for Alex to sing?

Sarah: Yes, it's a song by the boss, Bruce Springsteen, "How Can A Poor Man Stand Such Times and Live.”

Alex sings “How Can A Poor Man Stand Such Times and Live” by Bruce Springsteen.

Eric: Any reason you picked that song?

Sarah: The lyrics are apropos, the patient is left with a big bill and he's not totally sure what to do next and that's what we're talking about today.

Alex: Great.

Eric: Is that common?

Sarah: Yes, actually.

Eric: I'm gonna start us off by asking a question. What is this consortium?

Sarah: Yeah, so the consortium is a formal partnership between UCSF and UC Hastings College of the Law. Our mission is really to create interprofessional partnerships in education, research, and clinical training and service.

Eric: We just had Anna Chodos on who was talking about her work with the GWEP of creating partnerships with a bunch of different organizations in the community, academics, nonprofits. You're part of that, too, right?

Sarah: We are, so we are one of the community partners in the optimizing aging center and so, in our attempt to geriatricize primary care, as Anna likes to say, we are providing the legal expertise. What are the legal needs of older adults in our community and how can we work with healthcare providers and social service providers to enhance the capacity of all providers to provide care for this population?

Alex: You have a particular focus on the care needs and the legal needs of persons with dementia. Is that right?

Sarah: I do, so my research and teaching is in the law of aging and in dementia in particular and at UC Hastings, we have something called the medical legal partnership for seniors, which is a clinic in which our law students and faculty provide free legal assistance to low-income older patients at UCSF Med Center and here at the San Francisco VA.

Eric: That's terrific, so can you tell us a little bit, in terms of setting this up; but what is the need for legal assistance in older adults with dementia?

Sarah: Yeah, so the disease, of course, raises a whole host of questions about decision-making, so as dementia progresses, an individual will need more and more support with decision-making, with ADLs, and with IADLs, and will gradually become entirely dependent on others for decision-making and for providing for basic needs. The legal questions that that raises are, "What is the legal decision-making infrastructure that we can create for this person and for this family?"

Eric: We're fine, we do advanced care planning, we ask everybody about their advanced directives, whether it's been done and about life sustaining treatments at the end of life, shouldn't that cover? Shouldn't we be done?

Sarah: That's an excellent question, Eric, so that is really just the tip of the iceberg, so the first part of that is we usually think of advanced care planning as being about decisions about death. In dementia, decisions about death are an important piece of that; but what we're really trying to focus on are decisions about the moment of incapacity or that gray area where we're not sure if the person has capacity for decision-making. What do we do about that moment and what do we do about the prospect that this individual is going to live potentially multiple years with a need for supported decision-making or for someone to simply be making decisions for them? The medical decision-making is part of that, but we also need a plan for personal care decisions, for financial and legal decision-making, whether the person's going to live, a whole host of things. Think about all of the decisions that you make in your life and now suddenly we have to come up with a plan for how someone else is eventually going to make those decisions.

Eric: What stage do you typically get involved? Are you talking about people who have mild cognitive impairment, who have early stage dementia, who have advanced dementia and caregivers are coming, to all of the above?

Sarah: Yeah.

Eric: Is there a primary focus?

Sarah: The medical legal partnership model is meant to be an upstream model, so the goal is really for lawyers and healthcare providers to work together to prevent acute legal needs basically. A lot of legal care is emergency medical care and so, conservatorship is an example of emergency medical care or trying to unwind elder financial abuse, that's something we prefer not to do. We would prefer to get in as early as possible to prevent this situation, so how do you do that? You do that before the individual has lost capacity, so if a patient has MCI, that's a good time to get in. Early stage dementia is a good time to get in. There are legal needs that arise in advanced dementia and they're usually caregiver-focused, but again, that's not the time that we would prefer to be intervening. We would prefer to meet with a patient who's in a position who can articulate their goals of care, their goals for financial legal decision-making, their goals for their families. We can really optimize their ability to engage in decision-making and come up with a good plan and be really thoughtful about it.

Eric: Are you finding that patients with early stage dementia are typically able to continue to be involved in these decisions?

Sarah: Of course, so this is preaching to the choir; but capacity, of course, is not an all or nothing proposition and diagnosis of dementia does not mean that somebody now lacks capacity to make decisions. Capacity is highly variable and decision-specific and that's increasingly recognized in the law. It's certainly recognized in California and so, a person may not be able to independently manage their finances. They might make some bad decisions, but that doesn't mean that they lack capacity to choose a financial agent for instance, or to say where they want to live, or to hire an attorney who can help them navigate the insane patchwork of benefits that older adults have to navigate in order to access long-term care or just basic needs.

Eric: Yeah, that's a really fundamental point and we may be the choir; but I think there are a lot of folks out there who have misunderstandings about the capacity of people with dementia to make these decisions that if they're not managing their finances correctly, then they can't engage in doing the financial advanced care planning, legal advanced care planning that you're talking about.

Sarah: It certainly raises the potential and the prospect for undue influence and so, that's not to say we shouldn't be very careful in assisting persons with dementia with decision-making; but it's not the same as saying that they don't have any legal or clinical ability to weigh in or make these decisions.

Eric: What should the doctor's role be with all these decisions? Because we get no training on financial decision-making, assessing financial capacity, will stress, none of that.

Sarah: Yeah, so the first thing you can do is help screen for and identify these needs in patients and families. I think that Medicare and other funders or payers are increasingly interested in incentivizing this kind of whole person care planning. There's a new Medicare CPT code that reimburses for care planning with persons with cognitive impairment.

Eric: That doctors can use?

Sarah: That doctors can use or nurses. There's a whole host of healthcare team members that can use it.

Eric: But not social workers, I think.

Sarah: Not social workers. Correct, unfortunately, and not lawyers unfortunately; but maybe lawyers should be reimbursed for this as well. But part of that CPT code reimburses for assessing not only for cognitive impairment, but for social needs of both the patient and the caregiver. A lot of those needs are actually legal needs or have a legal dimension to them and so, not getting reimbursed is no longer an excuse. There is a mechanism for doing this and for the training piece of it, if you don't have a medical legal partnership in your medical center, you can partner with people in the community who can help train on this. I would say the first thing to do is think about your patient population, think about who in that population is at risk of cognitive impairment or decline in the next six months to a year, and target those people and educate them about the need for an advanced directive and for financial and legal planning.

Eric: When I think of our palliative care population, we're often working with people who may have months, maybe years, that they have to live or that they may lose capacity at some point, even for a short period of time. I think in geriatrics, we're coming around to the idea of medical legal practice clinics and the importance of them, at least partnering with lawyers. I don't get the same sense we're doing that in palliative care. Is that right?

Sarah: Yeah, so there are almost 400 medical legal partnerships around the country now, at least one in almost every state. The vast majority of them are focused on kids and families, which is incredibly, incredibly important; but I think that because of the demographic need and just the nature of the complex needs that people have in geriatrics and palliative care, there should be more of us. The medical legal partnership for seniors is one of less than a handful of these models around the country, but they are out there. We're trying to grow.

Eric: What does it actually look like? Are you hanging out with the physician while they're seeing patients?

Sarah: Yes.

Eric: Yeah?

Sarah: Yes, the difference between medical legal partnership and a referral into the community is that the legal team is actually integrated into the care of the patient and so, where that starts is with joint education. For instance, in our clinic, our students are trained by geriatricians at UCSF and in the community about the health needs of older adults. We do joint training on capacity, so what's the clinical view of capacity and then, what's the legal view of capacity. How do you reconcile the two of those in an individual patient client? It starts with training, making sure that the healthcare team and the legal team have some sort of common overlapping base of knowledge. With that knowledge, the providers are equipped to now start recognizing legal needs in their patients. Now, healthcare providers are in a position where they can say, "Hey, I think that this is really important to your healthcare if you actually sort out how you're going to access long-term care supports and services that are going to support your goal of care to stay in your home." Right?

Eric: Yeah.

Sarah: It's one thing to say, "You have a goal of care. It's another thing to have the resources to make that a reality and I think my friend down the hall is a lawyer who can provide free legal assistance to help you understand and unpack a lot of those stuff." The other technical piece of this is there's information and data sharing that can happen, so if people are worried about HIPAA, you should be; but medical legal partnerships have worked out a way to work within HIPAA to permit a certain amount of data sharing between the legal team and the healthcare team, in order to maximize our ability to advocate together for the patient, for whatever their needs might be.

Eric: That's terrific, so one thing comes up off and in dementia, is the incredibly high cost not of a healthcare; but of the need for a personal assistance, living arrangements, or supportive housing for people who develop dementia and/or have progressive dementia. Is part of what you do educating patients and families about what's ahead prognostically - not in terms of life expectancy as much, but in terms of financially what they need to prepare for?

Sarah: Financially, yes. In a medical legal partnership, what's helpful is to be able to have the clinical team educate about prognosis and the progression of disease because we can absorb some of that by osmosis.

It helps us do our jobs better, but we're not trained to do that piece, so what we are trained to do is talk about the financial and legal mechanisms, in other words, benefits, rights to pensions, those sorts of things, how to navigate the patchwork of financial and legal resources to access the benefits that you will need, how to think ahead about it.

A big piece of that is also elder financial abuse prevention because we have a gap in coverage as you've noted. Medicare does not pay for the majority of services that families need in dementia and Medicaid ends up being the number one payer of long-term care supports and services, but many families overestimate the role of Medicare in paying for their costs.

They haven't planned and they have no idea about the role of Medicaid in long-term care. A lot of people perceive Medicaid as that program for poor people, right? With stigma embedded in that and don't realize that Medicaid ends up being the safety net for the middle class and sometimes the safety net for higher income people who have been victims of elder financial abuse in the marketplace and have lost a lot of assets.

It plays an outsize role in care of this population, but out-of-pocket costs are also enormous.

Eric: Yeah.

Sarah: One thing that an attorney can do is educate about your rights within certain programs, so the social security program, the VA host of benefits, certainly, the Medicaid program, because Medicaid is essentially a series of subprograms. It can become very complex for people who don't understand how to navigate that, so a lot of legal aid offices will educate families about what those programs are, the benefits that might be available to them, and thinking ahead. You can pay out-of-pocket using X number of resources for so long and then, what's the strategy going to be. For the 10% of people who actually buy long-term care policies, they often need help navigating those policies because unfortunately they don't offer the range of benefits or supports that families thought they were going to receive. Sometimes, legal advocacy and education can be really helpful there as well.

Eric: Just a New York Times article on the ethics of, I think, asset protection to qualify for Medicaid and giving away your assets to qualify for Medicaid, even for those who are upper middle class high earners. Did you see that article?

Sarah: Yeah.

Eric: Do you have any thoughts on what should our role be in helping people think about, for instance, asset protection and the need for qualifying for Medicaid?

Sarah: I'm really glad you asked that question, so I think a good form of medical planning is to take a whole person approach. I'm sorry I keep saying Medi-Cal because that's our program in California, but by MediCal, I mean Medicaid generally in other states as well. Why do you want to be on the Medicaid program? There are many reasons where you might not want to be on the Medicaid program and paying out-of-pocket would give you more options, but if you don't understand the Medicaid program, or what it means to be on the Medicaid program, or what that will mean for your assets and wealth, then you will have a harder time making that decision.

I think of it, first of all, as just an educational tool. What is the program? Do you understand what this is?

Do you understand some of the practical limitations of being on the Medicaid program? Even though many forms of discrimination are unlawful, for people on the Medicaid program, they do happen.

Part of an attorney's job is to tell you both your theoretical rights and how those play out locally and what you might want to keep in mind in terms of access to various services, but I guess I would also respond to that by asking you a question, which is, have you ever been to a tax planner?

Eric: No, but my wife is a tax attorney.

Sarah: Well, why do you think I asked that question?

Eric: I don't know.

Sarah: This is entirely my opinion. I'm not speaking for UCSF Medical Center or UC Hastings College of the Law. This is entirely my opinion. There are a lot of mechanisms by which wealthier individuals can get information and assistance in understanding how to protect the wealth that they have accumulated over their lifetime for themselves and for their families. Those are very well-accepted services and mechanisms, but for some reason, when it comes to lower income people and middle class people, there's the stigma about getting information about how to protect your resources. My view is that we should at least be internally consistent about our views of the rights of different people to get information and assistance in making decisions about how to manage their resources, whether that's for high-income people or for low-income people.

Eric: Yeah, we see it a lot where somebody doesn't have a lot of money, maybe it's $20,000 that they have left. They make enough to qualify or not qualify for Medicaid, but their number one goal more than anything is that they want to make sure that that $20,000 goes to a certain family member upon their death. They will do anything to protect that $20,000 and it surprised me a lot. It just happened to us a week ago on our palliative care consult service.

Sarah: It happens a lot and I think I do see it as a social justice issue, so Amy Kelley and colleagues have a really sobering paper in annals of internal medicine that I really, really recommend. They essentially looked at the cost of dementia care in the last five months of life and they found the average cost of dementia care was a little over $60,000 in the last five months of life and that was entirely out-of-pocket.

This represented about 30% of patients' wealth in dementia as compared to other diseases, so in the non-dementia group, the out-of-pocket costs were about 11%. It has a disproportionate impact on certain communities, so they found that in African-American patients, the out-of-pocket cost represented about 60% of their wealth.

Two-thirds of their wealth went to paying for long-term care supports and services. For single women, so women who were widowed or unmarried, it represented about 58% of their wealth. With people with less than a high school education, I think it was about 58% of their wealth, so if you think about all of your income and assets that you've worked so hard for over your whole life and for vulnerable populations, you literally had to scrape together, that now is going to just provide for your basic needs and your basic care.

This is an untenable situation for a lot of people in our community and I think because of our national and state policies, we've setup an environment that is a highly complex decision-making environment. We've essentially said, "Good luck to you. Go figure out how to marshal the resources to pay for this care that you need."

I think in that environment and I think reasonable people can disagree about the best way to provide a system of long-term care supports and services, but I think we should be transparent about the fact that we have put the onus on patients and families to figure this out. We've put this onus on them at a time when they're losing cognitive function and they're highly stressed.

It's not a good decision-making environment, so it's no wonder that almost 50% of persons with dementia experience at least one form of elder abuse. These are really highly stressful situations, so direct legal education and assistance is something we can do to help them, to help mitigate that stress and help support decision-making and hopefully prevent outcomes that are really detrimental to health, like conservatorship and elder abuse.

Eric: That's terrific. We'll include a link to the Amy Kelley paper, fantastic paper, in the GeriPal post or the company's podcast. I wanted to ask you about caregivers because they're just a huge part of this story in dementia and the burden on caregivers, physically, emotionally, and financially. I want to ask how you work with caregivers in particular to support them through this process.

Sarah: An important thing that I've discovered in my work, well, this isn't news to a lot of people; but caregivers are navigating a huge number of decisions on a daily basis in addition to grappling with the emotional and psychosocial dimensions of caring for someone with dementia. One piece that we can do on the legal side is, for instance, helping to educated them about their role as a decision-maker for the older adult.

I have found in my work that a lot of caregivers don't really understand basic concepts, the difference between an agent and a conservator, the types of powers that they have. I hear a lot of people confusing powers under an advanced directive with powers for financial decision-making.

We're not supporting and we're not preparing caregivers to make these decisions and it can lead to suboptimal decision-making and in some cases, allegations of undue influence and abuse. Another piece is ensuring that the caregiver themselves has secure housing, stable housing, that they are not being discriminated against in the workplace or place of education because of their caregiving responsibilities, so advocating on that front to help ensure that they're at least getting what they're entitled to in terms of work protection.

There's a whole host of things that we can do. If caregivers themselves are economically insecure, we can assess their benefits and obviously, if they're spouses, a lot of these things, you're talking about these things in tandem; but for older children, it's a little bit of a different approach to advocacy.

Eric: It sounds like one thing we should all be thinking about doing is setting up a medical legal practice clinic. If we're not there yet or it's logistically impossible, two or three things that listeners can start doing in their practice to make sure we're addressing some of these needs.

Sarah: Again, identifying your at risk population.

Eric: Do you have specific tools that may help with that or questions that we should ask?

Sarah: Think about who is at risk of cognitive impairment in the next six months to a year and think about if that individual has an advanced directive. If they don't have an advanced directive, they probably don't have any of their other financial or legal planning in place. If they do have their advanced directive, it doesn't necessarily mean they have all their other ducks in a row; but then, ask the question, "Have you done any financial or legal planning?"

Eric: If the answer is no?

Sarah: If the answer is no, then refer them to legal aid in the community, so the Older Americans Act provides free legal resources to individuals over the age of 60, at least, in theory, in every state, in every community. One reality about accessing legal aid is that they are incredibly overworked and underfunded and often, unfortunately, cannot prioritize low urgency needs like advanced planning.

This is one of the needs that in MLP we're trying to bridge is rather than wait until we're defending an eviction, can we get in earlier? Right? But some communities won't have that luxury, but you can try, so start with a free legal service with the Older Americans Act provider in your community. If they are unable to take the client, then refer them to your local state bar referral service, to an elder law attorney.

The state planner doesn't necessarily have expertise in the things like Medicaid for long-term care and so, referring to someone who has experience with older people or people with disabilities is an important thing to keep in mind. I also really recommend against making direct referrals to private attorneys in the community. It's much better to go to the state bar regulated referral service, so that they can do some intake and make sure that the person is directed to the right attorney.

Eric: Let's say I don't have a medical legal practice clinic or MLP, but I want to start one. Are there resources for me to do so?

Sarah: There are really fabulous resources on the National Center for Medical Legal Partnership website. The best resources are going to be right in your community, so there are legal aid attorneys and in many places, law schools that are doing this kind of work and connecting your work is going to make a lot of sense, both for training of professionals and for better serving the client and patients that we all work with.

There are some promising things that I can mention in terms of funding, so HERSA has determined that civil legal services can be paid for using HERSA dollars. Some community health centers are doing that, some health centers have said, "We see a return on investment in these programs." For instance, some MLPS have demonstrated a reduction in hospital readmissions and a reduction in overall utilization, cost of care.

Some MLPs, one in palliative care, actually, in Nebraska, has demonstrated a return on investment. The medical center is actually paying for their legal services, providing those to their patients. There's currently a proposed macro rule that would allow screening for health-harming legal needs to be considered one of the factors in MIPS scoring, so screening for health-harming needs if the rule is passed would be something that could positively impact your MIPS score.

Other mechanisms, the VA is currently very interested in medical legal partnerships. We're still looking for a sustainability mechanism through the VA, but certainly there are opportunities to expand to VAs as well. At the policy and systems levels, there are mechanisms that are emerging. The national center has done really great work around to enable health systems to adopt MLPS.

Eric: Wonderful. Well, maybe with that, I want to really thank you for sharing your time with us today.

Alex: Thank you so much, Sarah.

Eric: For the great things that you're doing out there. Alex, sing Sarah a different song. What are we gonna do?

Alex: Can we try that again?

Sarah: Yeah.

Alex: I'll try it again. Alright, I'm gonna try to get it right this time.

Alex sings “How Can A Poor Man Stand Such Times and Live” by Bruce Springsteen.

produced by: Sean Lang-Brown
by: Eric Widera

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