Wednesday, August 9, 2017

Vicki Jackson and David Ryan on "Living with Cancer"


By: Alex Smith, @AlexSmithMD

Symbiosis.  Remember the idea that the fish and the sea turtles live in symbiosis?  The fish eat the algae and parasites off the sea turtles back, and the turtles get a free shell cleaning.  Both are rewarded.  (You're wondering why I'm talking about sea turtles and fish.  OK, I'm in Hawaii and just heard this example from a naturalist/kayak instructor).

The ideal of co-managment is symbiosis: both clinicians contributing symbiotically to make each other better, resulting in better care for patients.

I can't think of a higher example of a symbiotic relationship between clinicians than what Vicki Jackson, Chief of Palliative Care at Massachusetts General Hospital (MGH), and David Ryan, Chief of Oncology at MGH have achieved.

It shines through in this weeks podcast.  We challenged them on a few occasions about their terrific new book "Living with Cancer."  Listen to how they tell the story of learning from each other, working with each other, and making each other better clinicians.  To the point that they decided to write this book TOGETHER.

For our readers and listeners, who are primarily clinicians, this is a book for any of your friends or relatives who, newly diagnosed with cancer, calls you to ask, "What do I need to know about x cancer?"

This book is a thorough resource, almost a textbook, of a palliative oncology approach to cancer. For example, they reframe the initial clinical encounter with the oncologist, remarkably suggesting that patients first question to the the oncologist should be about goals of care, "What is the goal of treatment?"  Toward the end there is a remarkable chapter where they talk plainly about types of deaths that are preferable, and "bad" deaths to be avoided (they had to fight to keep this chapter in the book).

Key quotes:
  • David: The hardest thing I think we do in the oncology clinic, and palliative care has been a great help with us, is prognostic awareness. I think that, we decided we thought long and hard about how to frame these first oncology meetings. I always try to meeting with people for the first time, and Vicki can attest to this, I always spend the bulk of the time at the end talking about what is our goal of treatment. Is it to ... and there's really only three things we can do for any patient sitting across from us, right? You can cure them. You can help them live longer or you can help them feel better. So, we talk about that in the book. It's cure, live longer, feel better. Once you get patients oriented around those three topics, everything else kind of falls into place.
  • Vicki: This whole idea of pairing hope and worry became to me from a patient of mine. Who actually, when I was doing fellowship he was in his 20's and he said to me "Vicki, I want you always to be hopeful and always honest." And I was like, "Ooooo, how do I do that?" Right? I said to him "What if I had information that is honest but not particularly hopeful?" And he said, "I just want to know that you hope I would beat those odds."...So, I think if we can continue that human connection, we don't have to be perfect. We're just trying to help them, help patients and families, so they can make decisions that feel right given what our best estimate is.
  • David: I think we came to the conclusion that there's not an oncologist or a pilot care clinician who can't bring up a patient when you ask them "Do you believe in a bad death? Would you want to die that way?" All of us who've done this over and over again, know exactly what we mean when we say bad death. Inevitably, a bad death is the opposite of what Monica experienced in the story. There wasn't acceptance. There wasn't a family around to help to take care and there were symptoms that Monica had that were easily controllable. If you don't have acceptance, if you don't have friends and family around to help you, and if you have terrible symptoms that are out of control, that's a bad death.  While some of it is out of our control, a lot of it is within our control and I think this chapter, the reason why we decided to ultimately go with it, is to make that point. In clinic we are always trying to tell people, in fact we are arguing with patients, I would say more often than not, not to do chemotherapy. Not to keep pursing that clinical trial. Not to go for that phase 1 trial that is available in New York or Boston or Philly.
Enjoy!

Living with Cancer (on Amazon).




Listen to GeriPal Podcasts on:
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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 are our guest today?

Alex: We have our first repeat guest today. We have Vicki Jackson, who is Chief of Palliative Care at the Massachusetts General Hospital and she's joined today by David Ryan who is Chief of Hematology/Oncology at Massachusetts General Hospital.

Welcome to the GeriPal Podcast.

David: Thank you.

Vicki: Thanks guys, great to be back.

Eric: We start out with asking our guest for a song for Alex to sing. Do you have one for Alex?

David: Sure. Springsteen's "The Promised Land."

Alex: Alright.

Alex sings “The Promised Land” by Bruce Springsteen.

Vicki: Bravo.

Eric: That was awesome.

Alex: So, you wrote a book together: Living With Cancer: A Step-by-Step Guide for Coping Medically and Emotionally with a Serious Diagnosis.

Vicki: We did.

Alex: We're excited to talk to you about this book. My first question is how did you come to decide to write this book together?

David: So Vicki and I do ...Every other week we do rounds up on the in-patient service and it's basically tough cases that are on the floor that the residents and the nurse practitioners are struggling with. As usual, we have to wait for them because it's 11:00 and they've got a lot of things going on and Vicki and I were sitting there and I said "Hey, Vic, do you have to call back friends of friends, and friends of family with cancer diagnosis and explain what's going on and how to understand the diagnosis, the cancer and the treatment and the end of life stuff?” She said, "All the time."

David: And I said "Do you tell the same stories over and over again?" She said, "All the time." I said to Vic "Why don't we write that down together and talk about all the stories that we tell patients to help them understand what they're going through and how bout we have a book that's like 'What to Expect When You're Expecting?' Except it's not for pregnancy."

Alex: Good analogy. That's great. And tell us about the process of writing this book together. How does that work?

Vicki: Wow. I would say Dave and I have learned a lot in this that we didn't know at all both being sort of in an academic and medical institution and not having ever written a book before. We actually had to get an agent to help us sort of figure out how to navigate this. Then had to get ... We have a writer, who is a medical writer, who helped us sort of take the stories and the information and make sure that it was really accessible.

The thing that we didn't know is basically before you write a book, you have to write a book proposal. Which is every single chapter ... A portion of every single chapter in entire chapters and I think ours is 80 pages. Something like that.

David: Right.

Vicki: Then they shop it around to different publishing houses. And the thing that was really interesting for Dave and I in this, is that there were a bunch of commercial houses that were like "This is great. You guys are great. It's a fabulous book. Fabulous idea, but could you take out that scary last part of the book and then put in something about nutrition? Something like that?"

Dave and I were pretty clear that that just wasn't the book we were gonna write and if we couldn't have anyone interested in this book, then we just weren't gonna do it. Thankfully, John Hopkins University Press was interested in it. We kinda went from there, but it was three years start to finish?

David: Yup. Three years.

Vicki: Three years start to finish. A lot of writing on Sunday mornings.

Eric: Now it also seems like you include language -which is incredibly important- you include some fairly detailed language using specific diagnoses words that often that are not discussed in the lay press. I can't remember

Alex: NK1 inhibitors, 5HT antagonists. Specific types of adjuvant chemotherapy etc.

David: So we wanted it to be accessible, but not dumbed down. So we wanted this to be something that patients and families, when they're taking notes in front of us could go back and say "Okay, what she'd say? What did he say?" And go to this specific chapter on nausea or diarrhea or whatever it was and then match up their pill bottles and say "Oh I get it now. I remember what he said. He said just like it is here." And we got great feedback on the symptoms chapters from ... Turns out Hopkins sends it out to oncologist and physicians to review. The symptom chapters came back with great reviews. They almost had nothing to say. They said "Can I send this out to my patients 'cause it's a perfect little review for patients."

Alex: I can imagine that patients hear these words all the time like pneumonitis and neutropenia, which generally probably makes no sense to the vast majority of patients and family care givers. But they're gonna hear it. Did that come into the thinking too? Is that we have to label these words as they would hear it in the medical system?

Vicki: Yeah. I think the way Dave and I really thought about this was when we meet patients for the first time the way I frame it and the outpatient clinic is, “My goal is for you to become a competent capable cancer patient. I wish you didn't have to, but you will and we're gonna help you do that. Part of the way to do that is to educate you and empower you to ask questions.” So we felt that, we were going to try and let them in on what we were thinking as the clinicians and how we frame these issues and the different tools in their tool box that they could ask their clinical team about.

So we really did try to make sure that it would be something that would be useful and as Dave said, not dumbed down. This is about empowering people to understand themselves and understand how they can advocate for themselves.

Alex: Have you gotten feedback from patients or family members?

David: Yeah. Yeah, I was really scared that the patients, my current patients, wouldn't like it. Because, we had done these videos. I'd done a few media things in the past. My past experience was that the current patients hate it because it’s very truthful and honest and the patients' family members or my old patients loved it. So, I was really worried that the current patients were going to hate it. But, we have had great feedback. In fact, the patients knew we were writing it, and when it came out, they all bought books and then they all brought them into be signed. They said different parts of it that they really liked.

Alex: We should mention at this point that we're gonna have a link to the book, on the GeriPal post and you can find the book there. I wanted to ask you a question about ... So the first question that you suggest they ask their oncologist. The first question you want to ask after staging is, "What the oncologist hope the treatment will do for you?" What is the goal of treatment. By knowing the goal of treatment you can choose the options that are right for you. It strikes me that ... I don't know that I ever have or heard of a patient ask their oncologist, that boldly, about the goal of treatment up front. Is this something that's starting to happen in clinical encounters with new diagnosed patients?

David: So that's a great question. We just ... the thing we wanted to impart about that was the beginning of understanding prognosis. The hardest thing I think we do in the oncology clinic, and palliative care has been a great help with us, is prognostic awareness. I think that, we decided we thought long and hard about how to frame these first oncology meetings. I always try to meeting with people for the first time, and Vicki can attest to this, I always spend the bulk of the time at the end talking about what is our goal of treatment. Is it to ... and there's really only three things we can do for any patient sitting across from us, right? You can cure them. You can help them live longer or you can help them feel better. So, we talk about that in the book. It's cure, live longer, feel better. Once you get patients oriented around those three topics, everything else kind of falls into place.

If you decide to take shortcuts, or ignore that I've always found in my own practice I'm backing up. So every time I'm sitting and talking to an initial patient, I'm saying "Are we trying to cure you? We trying to help you live longer/ We trying to help you feel better?"

Eric: So that seems like much more accessible language than remission, response, progression

David: Yeah. Yeah. And I don't think we do good job of teaching the fellows, particularly the oncology fellows on how to communicate that in a good way.

Alex: This is terrific. It makes my pilot of care heart sing. Starting the conversation with the oncologist from the get-go by orienting around goals of care. This is amazing! This will be a sea of change, right? If we can activate patients to get their oncologist to refocus from the get-go from on goals of care. That would be amazing actually.

Vicki: Well you see why I love working here. But I think the other thing, to be straight up about though guys, I, for the last fifteen years been hanging out with a lot of oncologist, right? And I see them do this, and I see Dave do this and patients variably uptake that information. Even though the oncologist's been really straight about it and in very plain language. Part of that piece that we also had to do over the years with talking with the oncologists is saying "Okay, just so you know, you've done a beautiful job there. The patient didn't integrate that. They're going to come back again in a month and ask you ‘What do I have to do to be cured?’ And Dave I don't want you to think you did a crappy job there, because you didn't. This is just how ... Right now, they're not able to integrate that information.” I think that sort of triadic relationship really helped, because I get it. If a patient of Dave's doesn't understand, I don't think it's because Dave didn't say it, and Dave doesn't think I think he's a bad guy that he didn't do it, we just know that this is how it goes.

David: I would say 15 years ago when we started this project that seen patients together in the cancer clinic, it wasn't that way. I know that I always the palliative care doctor thought I was a jerk. I didn't talk to my patients and didn't really communicate. I always thought that I did a really good job of taking care of patients symptoms. I’d say the two biggest lessons, I mean there's a bunch of lessons that we've learned from working with one another ... I’d say the two biggest lessons that we've learned are: A) I wasn't doing a good job taking care of my patients symptoms. In part, because you're so rushed in clinic that you're thinking about the chemo and the dose and getting them upstairs to infusion. Is that port working? The nurse is yelling at you about not flushing properly and yadeyadayada and then you never get to their diarrhea.

On the flip side, what the pilot of care doctors learned was that it wasn't that the oncologist ... now maybe 15 years ago some oncologist weren't talking this way… Bbt it wasn't so much the oncologist weren't communicating, it was that the patient weren't hearing and maybe the oncologist thought the patient heard and just never kinda went back to it.

Alex: I want to continue on this vein about prognosis and introducing the idea prognostic awareness. You have a section in one of the next chapters on survival rates and how statistics themselves can be misleading. I'm looking at page 37 here. I thought it might be interesting if we can ask one of you to read this section. My guess is Dave, you wrote this section here when you say, "I work with two patients whose experiences with cancer were the opposite of what the statistics indicated.”

David: Oh yeah. So, Melissa had stage one colon cancer and a 90% chance of being alive in 5 years. And I told her so. Joanne had stage 4 colon cancer and the survival statistics indicated that she had 10% chance of being alive in 5 years. That was a difficult discussion. But I believe that doctors should talk about what might happen if the treatments don't work as well as we hoped. I was thrilled when Joanne's cancer responded wonderfully to therapy and even happier when she underwent surgery and had the tumor removed.

Five years later, Joanne scolded me, saying I should never tell anyone their survival statistics. She said she had lived in terror during that first year thinking each holiday and family birthday would be her last.

Melissa wasn't so fortunate. Despite having very hopeful survival statistic, her cancer returned in the fourth year after treatment. It became clear that the cancer had spread. She told me that I should have warned her more strongly that this was a possibility. She said that she would have lived differently if she had realized that time was so short.

Alex: Hmmm. One of the things that strikes me about this book is how the stories illustrate the point. But also sometimes the stories are surprising and they don't go the way that you think they're going to go, like these two stories here. I wanted to ask you a little bit more how palliative docs and oncologist should talk about prognosis with patients who are newly diagnosed with cancer, given that statistics can be wrong. People are individuals, they're not averages and yet there is some valuable information there that what happens to groups of patients like the patient in front of you.

Vicki: Yeah, it's a great question. I think the way we talk with patients and teach other to talk with patients, is we really love pairing hope and worry. So it's a way to get some broad scope of we're hoping that you can do well for a couple of years. We also worry that because we see these other things that time could be shorter. And often just people are not ... What I think clinicians and hopefully pilot of care clinicians don't worry about this, but I think what many clinicians were not trained and us worry about is that we're going to be wrong and then the patient is going to hold us to that and we've either over or underestimated and we lose all credibility.

And I think this ... I don't know if I've said this to either of you before, but this whole idea of pairing hope and worry became to me from a patient of mine. Who actually, when I was doing fellowship he was in his 20's and he said to me "Vicki, I want you always to be hopeful and always honest." And I was like, "Ooooo, how do I do that?" Right? I said to him "What if I had information that is honest but not particularly hopeful?" And he said, "I just want to know that you hope I would beat those odds."

And I think that is a way to be very genuinely connected and I think I would have to say in my clinical experience, when I've been wrong and people have lived much longer ... Like I remember a patient of mine who was actually a hospice medical director who asked me for a time based prognostic disclosure, and he said "How long do you think I have?" I said " You know, I hope I'm wrong, I worry it could be as short as a few weeks." And he was going home with hospice and he had a delayed response to chemotherapy and lived another nine months. He came back to see me in clinic he's said to me. " You know, I'm doing great." I said "How do you feel about the fact that I was wrong?" And he said "Well you said you'd hope I'd be right, so I just thought you'd be happy." I thought you're absolutely right, I'm thrilled that I was wrong.

So, I think if we can continue that human connection, we don't have to be perfect. We're just trying to help them, help patients and families, so they can make decisions that feel right given what our best estimate is.

Eric: I think that's a great analogy. I always think about it like, don't tell our listener audience, but I play the lottery occasionally. I know I'm not gonna win the lottery. Like what are the statistics? One in 500 million? But I hope I will.

Vicki: That's right.

Eric: And yo can tell me "No, Eric, you're not going to win the lottery" I'll think that's kind of rude, I'm still hoping. You can't take away my hope. But like, I know I worry I may not win it. I worry that I should not put my retirement ideas solely based on my hope for winning the lottery.

David: Yeah you know, it was purposeful that we use that story. That story actually happened to me and I've actually since that story happened often in the first visit particularly around adjuvant chemotherapy, it doesn't work so well in the metastatic setting. But around adjuvant setting, it works really well. I think the reason it works well, is that the person who wasn't suppose to do well, did really well and the person who was suppose to do great did really poorly. And so, it switches it and makes people think for a second. In that process of thinking all of a sudden the emotion gets crowded out by the thinking. It allows people to focus. I've found that's story is a great tool to help people understand that issues that we have with statistics. It frames it in terms of best case, worst case scenario.

Alex: Right.

Alex: So what is this section that struck me is maybe because this comes up so often in clinical work with patients with serious illness and you see this so often in TV - John McCain just diagnosed with cancer, right? And all of the messages are about positive thinking and he's a fighter.

Eric: He's gonna fight this cancer.

Alex: He's gonna fight this. Right? So, you have a section in your book. I'm looking on page 242, 243 on the negative power of positive thinking. And I wonder if there's a section of this you might read for example the story about Julie. I think, Vicki perhaps you write this? I'm not sure.

Vicki: Well, you know just to be clear, we would alternate back and forth writing chapters, but then we would edit each other's chapters. So I think, we can't even remember who wrote what anymore. Because if it became between us and Michelle, it's all blur. So we just we kind of run with it.

So this is really thinking about the unfortunate negative power of positive thinking.

I had a patient recently, Julie, who was having a lot of trouble sleeping. She had trouble falling asleep at night and would wake up at 2 or 3 in the morning with her mind racing. I asked her what she was thinking about when she couldn't sleep, but she didn't want to tell me at first. Finally, she admitted she was worrying about what would happen if her cancer got worse. She worried about her husband and how he would care for her if she were really sick and how she would be letting him down if she didn't get better. Then she sat up straighter and said, "But I can't think like that. I have to stay positive." She wasn't really talking to me at that point she was lecturing herself. She also said that if she didn't stay optimistic, she was inviting her cancer to grow.

Alex: So why do you say to patients, when their family members, when they say "We have to stay positive. We can't talk about this."

Vicki: Yeah. I would say in palliative care, I ask patients how they're sleeping because it's actually a really important key question. Really, I think with understanding how much anxiety their having even when they don't endorse anxiety when I ask them about it. Also with how comfortable they are with what their illness understand is and how much they can tolerate emotionally, being able to think about a likely illness trajectory.

So what I say to patients, is – and we try to teach them strategies about how to deal with that intense emotion- I say to them, “you know the reality is the fact anybody who has cancer, curable or not. If they don't have times that they were worrying about what the future holds, that would be crazy. Cause that's just not normal. Everybody should be worried about it.”

And what I say to them and what I notice in my patients is that, sometimes there worry if they give voice to that, then that means that they're not going to do well, that they're going to give up, that they're going to become depressed. Sometimes if people want to know data about it, I say our early intervention studies show the exact opposite. Like being able to have a safe space to have these conversations. Actually is associated with people having a better quality of life, less depression. I typically say to them, I think it impossible, no matter how strong you are, to block all those thoughts out. Typically what happens, is they come up at 3 in the morning and bite you in the backside.

So we have two choices to either completely try to block it out, which unfortunately I think is just not successful, or find a way that doesn't feel overwhelming to begin a dialog about these things. For people who are super resistant, we do what I call "talking about talking about it." I'll say "What would that look like to start talking about these topics. Who would be there? Would you want to make a list? Should it be on a week that you're getting chemo or not?" It's a really kind of motivational interviewing sort of approach.

Then folks who are really more open to it, we sometimes use this, and a patient taught me this idea of using the box metaphor, which we write in the book too. Is to say "You know what? All these things that you're worried about, let's sort of put them in this box and use that to, sort of, contain it and compartmentalize it. And that we can decide together when we are gonna open the box and how long the box stays open and when you're gonna close the box." Because patients will often say to me they worry if they start talking about these hard things, that they're never gonna stop and then it just feels so overwhelming and flooding.

So it's some conversation like that. I try it for a little bit. What if we open the box and talk about one thing that feels tough when you're thinking about what keeps you up at night. Let's do that for a bit and see how that goes. Then you can close the box.

So to typically my goal is to have them feel safe and connected, but build the emotional and intellectual muscles to look at these hard topics.

Eric: Those are two great keys right there. Especially the sleep question. I never thought about that. I just think about myself. I do all my worrying right before I go to sleep lying in bed and then I can't go to sleep cause I'm worrying so much.

Vicki: Yeah... Yeah exactly.

Alex: I wanted to ask you about a section that comes toward the end of the book, where you talk about the good death in Chapter 24 here. And also what a bad death is and I think there's some controversy about using these terms like is there such a thing as a good death? Is there such a thing as a bad death? This ties in with a little but about the way the bat of ethics is swung and the norms of what's acceptable for doctors in society. And it's swung from “doctors know best” the other way towards “we should respect patients what their preferences, their goals and values, even if that means dying in the ICU.” I think it maybe swing back the other way because as you write about here, you do have a conception what a bad death is. And you even label dying in the ICU as a bad death. I wonder if you could say little bit more about that balance between respecting patients' preferences, their wishes and coming to it with your own sense of what a good death and a bad death is.

David: I say we argued and argued about this chapter "What is a good death?", more than any other chapter. In fact, Michelle who's not here felt it was too negative. She was really upset and then Vicki and I argued about the three lessons and how to frame the three lessons the story that Monica showed about a good death.

I think we came to the conclusion that there's not an oncologist or a pilot care clinician who can't bring up a patient when you ask them "Do you believe in a bad death? Would you want to die that way?" All of us who've done this over and over again, know exactly what we mean when we say bad death. Inevitably, a bad death is the opposite of what Monica experienced in the story. There wasn't acceptance. There wasn't a family around to help to take care and there were symptoms that Monica had that were easily controllable. If you don't have acceptance, if you don't have friends and family around to help you, and if you have terrible symptoms that are out of control, that's a bad death.

While some of it is out of our control, a lot of it is within our control and I think this chapter, the reason why we decided to ultimately go with it, is to make that point. In clinic we are always trying to tell people, in fact we are arguing with patients, I would say more often than not, not to do chemotherapy. Not to keep pursing that clinical trial. Not to go for that phase 1 trial that is available in New York or Boston or Philly, which is our access. The perception in the public and the media is different. They think that we're ... The public is constantly saying "Don't. I don't want to do it. The doctor's making me do it." I would say if anybody who's done this job, 9 times out of 10, it's the patients arguing for more and you're trying to convince a patient not to. So that's why… it's a long winded explanation, but it's we why we ultimately said that chapter needs to be there.

Eric: Yeah I think that interesting thing though, is that there's probably a lot more influences cause you can open up magazines and see ads for cancer centers that say, "We won't give up on you." You can see commercials. We had a past Geripals post that included a bunch of commercials of cancer centers saying "we will never give up on you " or "Do you want to fight? Come to us." And even with messages like John McCain it's ... There is this battle analogy where it's like a good vs. bad, kinda like, good death vs. bad death. I think that influences that patients may not even realize that maybe changing how they’re thinking.

Vicki: Right, and I do think the problem ...another really problematic message is the "battle" metaphor. What Dave and I are continually saying to people is unfortunately, it's the biology. Right? You haven't lost if this cancer progresses. It's the biology.

I would say for this chapter, I think one piece that, I think where we settled, was that we wanted to say from our own experience what we, as what Dave was saying, what we felt like were deaths that could be different. I think acceptance doesn't mean like this kumbaya moment, where everybody is great about it and everybody is all around them like with Monica. That doesn't happen with everybody. There are patients who we care for who we try to help them along the way. We have difficult ones we share sometimes. Those folks may end up that may be necessary that they die in the intensive care unit.

What I always say when I'm teaching this stuff - you know we teach a bunch of this stuff in our courses at HMS Center for Palliative care- is, “we have failed, not if the patient dies in the ICU, we failed if we haven't tried to talk with them, about what that role really looked like, what our worries are, and that there are alternatives. And that we are going to stay partnered with them no matter what happens. That's when we fail.”

So, I think the other piece we tried to do with the book was to have it be honest and open about how we feel and how we're emotionally connected to our patients and we feel badly when patients are suffering at the very end of life. It's hard. It's hard for us too.

Eric: So if readers or listeners to this podcast are interested in learning more about the book, is there a website they can go to?

Vicki: Yeah there is. It's called livingwithcancerbook.com.

Alex: Great. Terrific.

Eric: Well, we'd like to thank you both for joining us today. Maybe Alex can take us out with a little verse at the end?

Alex: Welcome to join in over there on the East Coast!

Alex sings “The Promised Land” by Bruce Springsteen.


produced by: Sean Lang-Brown
by: Alexander Smith
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Tuesday, August 1, 2017

Suzanne Gordon on The Battle for Veteran's Healthcare


There's a mismatch between what you read about in the papers and the debates on capitol hill about the VA and the day to day reality of people who work in the VA.  From congress what you here about are wait times to see a doctor.  But from many (not all) veterans, you hear about a system that works, a system that's less physician-centric than the private sector, and a system that outperforms other systems in terms of quality of care.

In this week's GeriPal podcast, we talk with award winning journalist Suzanne Gordon about her new book The Battle for Veterans' Health Care.  Some key excerpts from the podcast/transcript below:

  • I'm going through some things with some friends whose loved ones are dying in other health care systems. Very good health care systems. I have spent a lot of time with palliative care, in the VA, with some people in this room. I'm not seeing those kinds of conversations happening, that kind of advice. I'm seeing patients, really, being tortured to death. I call it the George Washington death. It's taking longer than poor George Washington, who mercifully, it only took them a day to kill him.  (Washington had a sore throat; he was bled 4 times, blistered, given an enema, and died)
  • [The VA is] a healthcare system. I think that's the other thing about Americans. We have no experience with healthcare systems. We've experiences with doctors' appointment systems or disease care, episodic episodes of disease care. If you look at the debate in D.C., in Congress, all you have to do is listen to a Senate Committee on Veterans Affairs or House. What they're talking about is doctors' appointments. Which doctors should you go to? Should you go to the doctor here, across the street? They don't understand that this is healthcare system. It delivers primary care and palliative care and geriatric care and homelessness and veterans' courts and cooking classes and salsa dancing...
  • HERSA did a study that showed that 55% of America's counties, all of them rural, have no psychiatrists, no psychologists and no social worker. None. So, you privatize mental health care, there is no place for you to go. The RAND did an independent assessment for the VA Commission on Care. They said there's no specialists in many areas where there are wait times and shortages for patients to access. Primary care is a huge problem in the United States. The U.S., unlike other industrialized countries, produces maybe, 15-20 percent primary care providers in its medical education system. There's a huge primary care shortage.
  •  I'm very worried that if we start channeling more veterans into the private sector, that this is going to put a strain on the systems. You're going to pit veterans against civilian patients. That will be very true in rural areas if some of the proposals that are in Congress see the light of day. They are proposing to offer higher than Medicare rates to providers in rural areas. If your Joe doc, and you could see Joe Smith, non veteran out there, you'll make 10 bucks less and then you can see James White, veteran. Pretty soon, the veterans are going to push out the [non-veterans]. That could be a very nasty picture.

Enjoy!

 

Listen to GeriPal Podcasts on:


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Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: Alex, Who is our guest today?

Alex: Our guest today is Suzanne Gordon, who's an award-winning journalist and her recent book is titled The Battle for Veterans' Health Care. She's won a number of different awards. Most recently the Disabled American Veterans Award. Welcome to the GeriPal PodCast.

Suzanne: Thank you for having me.

Alex: Thank you so much for joining us.

Eric: Do you have a song for Alex to sing us?

Suzanne: Have you ever seen the rain?

Alex sings “Have you ever seen the rain?” by John Fogerty.

Eric: Nice. Welcome and thanks for joining us today. You've been quite an advocate for the VA system. Before we go into your book ... It's called the Battle for Veterans' Health Care. Where again, can we find this?

Suzanne: You can find it on Amazon. You can find it anywhere you can find books. It's actually, I think, on Barnes and Nobles, Amazon, Cornell University Press website.

Eric: We'll have a link for that on GeriPal website. How did you get interested in the subject?

Suzanne: I've been writing about health care, mostly private sector health care, for about 35 more years. I'm a journalist, a proud graduate school dropout from French literature who dropped into journalism. I started writing about health care about mid-way through my career. Wrote a lot about nurses, about teamwork, patient safety, health care systems and edited a book series for Cornell University Press, called The Culture and Politics of Healthcare Work series. I've written, I think this is my 19th book. I've published 35, that mostly other people have written. I've edited and acquired.

I got to be familiar with the VA Health System about 10 years ago when I did some consulting for the VA around teamwork. They asked me to consult on some units that were having some teamwork problems. I did some teamwork workshops and was really impressed by their interest in teamwork when it was really not being promoted enough, in private sector hospitals and healthcare systems.

I was very impressed with what I was seeing as the standard of care and the accountability of the VA. It was very clear to me when I was hanging around some of these units, that if patients didn't get the care they wanted on time, people would go to their congressman. There would be a congressional investigation or some sort of action, and accountability and change.

As someone who has been a patient and a researcher of private healthcare systems, good luck with that!

Eric: In the private health care system?

Suzanne: Yeah. We can get to that later, but nobody who's looking at the VA is asking the critical question, "Compared to what?" Are there wait times in the VA? Well, yes there are, but compared to what, in the private sector? What is care compared to mental health care, compared to what? Palliative and geriatric care, compared to what?

I'm going through some things with some friends whose loved ones are dying in other health care systems. Very good health care systems. I have spent a lot of time with palliative care, in the VA, with some people in this room. I'm not seeing those kinds of conversations happening, that kind of advice. I'm seeing patients, really, being tortured to death. I call it the George Washington death. It's taking longer than poor George Washington, who mercifully, it only took them a day to kill him.

What I saw in the VA when I started doing some consulting, about 10 years ago, was really interesting to me. Then fast forward to 2013, 2013 and I met VA internist, primary care provider, Rebecca Shunk. I was doing some work at the ECFS Center for Innovation and Professional Care. I was doing some faculty teaching on teamwork. I met Rebecca because we did a session together on doctor, nurse relationships. She was telling me about what was going on at the VA, in terms of teamwork. I was really impressed because, I've been doing this for a long time in the private sector and you're lucky if they give you two hours of team training. You can't call two hours, training introduction. I was really impressed with what Rebecca was telling me. I think I might have come over here. I can't remember. Just a whole bunch of things.

I had also know the head of patient care services at VA central office, Roz Jane, who did the MRSA bundle in the VA and reduced MRSA by recruiting people who were housekeepers and transport workers and nurses, and not just physicians. I was extremely interested in that. There were just a whole bunch of things that came together. I thought to myself, why don't I write a book about VA healthcare.

Eric: Specifically, The Battle for VA Healthcare ... So, we have the nation's largest integrated health care system. In your book, you say, 70% of American physicians actually train in this system. It's an incredible place for research, clinical work and education.

Suzanne: Right.

Eric: Is it a threat?

Suzanne: Yeah. I had decided I was going to write this book. I call it, the big book about VA Healthcare where I was going really look at what was done in VA healthcare. I spent a lot of time looking at palliative care and geriatrics and primary care, and mental health care, and on and on. At the same time as I was writing that book, the Phoenix problems came up. The media latched onto-

Eric: ... wait times.

Suzanne: ... wait time issues. Then the people that want to privatize the VA took advantage of that. There was just this assault that was being launched on the VA by mostly the Koch brothers and their conservative funded group, The Concerned Veterans for America. So I started writing about that while I was doing this parallel work, looking at VA clinical care and innovation. I come out of a session where I would see this incredible PT in the home of a veteran with dementia, creating all these ways for his family to take care of him. I turn on NPR or CNN and it would be like, the VA is awful. It would be like having a parallel universe.

Eric: Yeah.

Suzanne: I traveled all over the country. I've been to VAs all over the country, although, I've spent the most time at Fort Miley, in San Francisco and also Martinez and various other places. What happened was, while I was writing this larger book, I decided that I needed to spin off a smaller book, that came out sooner, about the battle for veterans healthcare. The whole politics about why the nations' largest and fully integrated, publicly funded, healthcare system is under attack.

Eric: So, when you use the words, Battle for Veterans' Healthcare, who's in the battle? Who are the sides? Who are the participants? What's at stake?

Suzanne: That's a very good question. I think that the sides are some very wealthy, conservative, even more than conservative, funders and industrialists, and a lot of hospital's CEOs, big pharma, a lot of corporate interests. They would like to get their hands on whatever it is, $70 billion, depending on the year, pie, pot of gold, that is being spent on veterans' healthcare. Very judiciously, with excellent outcomes. They would like that money. You also have people who don't like government, want to shrink government, who really are almost offended by the idea that a government program could work. They don't want alternative models of care of delivery. They don't want alternative models of financing. I would argue, that they don't really want alternative models of ethical and moral motivation and incentives. One of the battlegrounds is this idea of, you have to have people compete with the private sector. You have to have people running after money, in order to be motivated. I think in the VA, you see a really different sense of motivation and incentives.

Eric: On the other side of that battle, other than you, that's written this book, who are the other participants? Are there other groups, not just politically, but of Veterans who are speaking out in favor of all of the good work that is happening within the VA healthcare system?

Suzanne: Absolutely. There are veterans service organizations that are real veterans service organizations as opposed to the Concerned Veterans for America. They don't have any members. They don't deliver any services. They're not a veterans service organization. There's some other veterans organizations like Iraq and Afghanistan Veterans. The IAVA, which is kind of a hybrid group because they don't ... They do more fundraising than they do service delivery, although, they do deliver services.

There's a really great group that started in San Francisco called, Fighting For Veterans Healthcare, FFVHC.org. They've just put out a really interesting policy analysis, that you can find on their website, of all the proposals that are now circulating in Washington about the VA. They analyze the impact of those proposals. There's Veteran's Caregivers. I think there are a lot of people out there, I've been trying to convince to pay attention to this, that are fighting for rationale healthcare in America, for national system of some kind, that goes under the name of single payer. The VA is the nation's only single- payer healthcare system. It's not a pure single payer system, but it's our only social healthcare system. It's a social justice system, and so forth.

I think that it's an interesting question because the sides are poorly drawn, in a way. A lot of people who would be for the VA, don't really know much about the VA. There's a lot of Veterans' that don't see the breadth of the VA. I've been writing this book for four years because every single time I hear about another program, it's like, "Oh my God. I have write about that. Oh, I found out about that. I have to talk to this person and that person."

It's a healthcare system. I think that's the other thing about Americans. We have no experience of a healthcare system. We've experiences of doctors' appointment systems or disease care, episodic episodes of disease care. If you look at the debate in D.C., in Congress, all you have to do is listen to a Senate Committee on Veterans Affairs or House. What they're talking about is doctors' appointments. Which doctors should you go to? Should you go to the doctor here, across the street? They don't understand that this is healthcare system. It delivers primary care and palliative care and geriatric care and homelessness and veterans' courts and cooking classes and salsa dancing, substance abuse programs...

Eric: You actually start off with a story of home based primary care where you actually go out on a visit with a physical therapist. Is that right?

Suzanne: I have been on may home based visits. In houses of ... You go to the veterans' house and this physical therapist was fixing up the house of a veteran who had dementia. A Korean War veteran, I believe he was. She went into the house and did a top to bottom rehab of the house. I've been on many home care visits. Home care is really a very important aspect of healthcare that the U.S. healthcare doesn't do well. Other healthcare systems ... I once had pneumonia in France. I called up and, "Should I go to the doctor?" "What do you mean, come to the doctor? You're sick. What an idea! You should leave your house and come ... No! We'll come to you." It was like, "Stay in bed."

Eric: Is there though, an argument for the other side? There are issues with the VA system. What do see as the big missteps for the VA? Are there?

Suzanne: Of course. Any healthcare system has problems. If you look at UCSF or Sutter or Kaiser, you'll see some of the same problems. The problems the VA has is obviously, there have been some wait times. There are people who are not wonderful. I've encountered people in every healthcare systems that I've ever researched, that ... Why did you become a doctor or nurse? You should be in Silicon Valley with computers. You shouldn't be with human beings. The question really isn't, "Does the VA make mistakes? Does the VA have some bad apples? Does the VA have people that could be kinder and gentler?" The question for any healthcare system is, "What do you do with that? How do you deal with your mistakes?" The VA is a public system, those mistakes become public and somebody is forced to do something about them.

Is there an argument that the VA makes mistakes? Yes. Is there an argument that the mistakes should be dealt with by privatizing and dismantling the system? There is no argument for that. There's only a counterargument. The counterargument is that the private sector is not equip to handle the complexity of the very particular problems people have when they enter the military at age 18, and prepare for battle, even if they never go in to battle.

I think the VA has developed over 70 years. We as American citizens have invested 70 years worth of money, billions and billions and billions and billions of dollars. We've gotten a very good return on our investment, which is why the right wing doesn't like it. They are really ignoring the evidence. If you have a problem with wait times ... Another problem I think the VA has in spade, is huge micromanagement at the top. I've seen a lot of poor management practices at the VA. I've seen a lot of poor management practices in private sector healthcare. Why do they have shelves and shelves and shelves of management leadership books. We've solved the problem?

Eric: I think it's fascinating, too. A large portion of where the VA delivers its care is in rural areas where access to care in the private sector, especially mental health ... Try to get mental health services in rural areas, outside the VA system. It's hard within the VA system. Outside the VA system, it's shockingly poor.

Suzanne: HERSA did a study that showed that 55% of America's counties, all of them rural, have no psychiatrists, no psychologists and no social worker. None. So, you privatize mental health care, there is no place for you to go. The RAND did an independent assessment for the VA Commission on Care. They said there's no specialists in many areas where there are wait times and shortages for patients to access. Primary care is a huge problem in the United States. The U.S., unlike other industrialized countries, produces maybe, 15-20 percent primary care providers in its medical education system. There's a huge primary care shortage. I personally, tried to find a primary care physician in the East Bay, another primary care doctor, because my doctor left practice. I went on Healthgrades and Yelp and all the places you go. Every single practice that I went to, that had a high grade, was closed.

Alex: I had that same issue. I tried to find a primary healthcare provider and the private sector is incredibly hard.

Eric: ... let alone someone who you feel like this person has good ratings.

Suzanne: Yeah. They're not there because we have a huge shortage. I'm very worried that if we start channeling more veterans into the private sector, that this is going to put a strain on the systems. You're going to pit veterans against civilian patients. That will be very true in rural areas if some of the proposals that are in Congress see the light of day. They are proposing to offer higher than Medicare rates to providers in rural areas. If you're Joe doc, and you could see Joe Smith, non veteran out there, you'll make 10 bucks less and then you can see James White, veteran. Pretty soon, the veterans are going to push out the regular people, regular patients, who don't have VA care. That could be a very nasty picture.

Eric: What would dismantling the VA system look like? What it feels like is this slow burn. You just put in less money in the system. Whatever money you put in the system, you focus on non VA providers, providing that care. Eventually, with less people, less money going into the system, the quality of care will decease to the point where you will have the argument, "Well, the quality of the VA care is sub-par. Let's completely dismantle the system." Do you think that's how it's going to go?

Suzanne: Yeah. I think that people have to really understand because veterans don't want the VA privatized. Most people don't want the VA privatized. What they think about it in terms of privatization is, "It's Friday afternoon. Fort Miley closes and we have an auction and we sell it. On Monday, it's open and some private sector provider runs it." That is one option and the most conservative people like the Concerned Veterans for America and a group led by Toby Cosgrove, the CEO of the Cleveland Clinic and some other people. That's of what they would like to have happen in the next 20 years.

You can privatization that is this kind of salami kind of privatization where first you get rid of optometry and audiology. Then you get rid of dentistry and then maybe primary care isn't our core mission. We get rid of that.

Eric: All the things the big hospitals don't like to do anyways.

Suzanne: Right. Yes. There are many ways to do it. I think you see them all operating in Washington, now. You demonize healthcare workers in the VA. Their all terrible. You need to fire them on the spot. Never mind the fact that 100,000 are veterans. It's really interesting to me, because I work in patient safety. The worst problem in patient safety, in patient medicine ... they are saying all the professions ... is this culture of blame and shame. "You made a mistake. You're out. Don't say a word. There's no excuse, etc., etc."

There's actually a movement around patient safety in the broader healthcare system, around what's called Just Culture. It's where you're trying not to do that. So people can say, "I made a mistake," and mistakes don't go underground. You learn from them. What's going on in Washington, is exactly what you do not want to happen to have a safe healthcare system. Ultimately, these people in Congress are managing a healthcare system. Right? This is the nations' largest healthcare system. It's one of the largest in the world. It isn't the largest in the world, but it's one of the largest in the world.

You don't want whistle blowers. You want problems solvers. You want people to speak up. You want a nurse to tell a doctor, you're about to give the wrong med or the wrong dose. You want a transport worker, like they did in Pittsburgh, with this MRSA bundle, to say, "We really have to think about how we're transporting people who might have MRSA or an infection". You want them to be able to raise their voices. You do not want to create a punitive environment. Obviously, you want to get rid of people who are not trainable and intractable.

This is not good patient safety leadership. It's privatization leadership. You're attacking the public sector people. You're attack the unions. You don't pay adequate salaries. You create a sense of instability. If I'm thinking about, do I want to work in private care at the VA or do I want to get $40,000 or $50,000 or $100,000 more and work somewhere else? Not only are they going to get more money, they're saying the VA is in critical condition and a mess. Why would I want to work in a place that's a mess?

It's very important for veterans to understand. I think a lot of them don't. Even VA employees to understand that there's this attack going on. A lot of people think, "Oh, they'll never do it." Well, look what they did to public schools. There's a lot that they can do, if people don't fight.

Eric: So what should healthcare professionals that have trained in the VA system, they may be working in the VA System, they may not, but they have an affection from their training ... What should they be doing if they care about the VA system?

Suzanne: If they care about the VA system, and they care about healthcare in general, they should understand that the VA system isn't just for veterans. As you pointed out, you're training 70% of the nation’s physicians. You're training them not just how to give meds and what dose is the right dose. You're trailing them in teamwork, you're training them in geriatric care, you're training them in palliative care, you're training them in mental healthcare. Those models will be lost to the broader healthcare system. The VA does ... and you're training PTs and OTs and all kinds of other professionals.

I have been deeply impressed by the models of palliative care, geriatric care. As I said earlier, things that I wish I would receive when I'm sick and old ... I'm getting there, old at least. I don't have a hope of receiving them in the private healthcare system. It costs too much. Also, VA physicians are on salary so they don't have an incentive to over treat and throw all this stuff at you at end of life, or even in the middle of it. We will lose that.

People have to look at the VA and understand, it's not just about veterans. Of course, it's about veterans and we owe veterans precisely what we're giving them. A system that's trying really, really hard, sometimes against all odds, to serve them well, and that largely does serve them well. We all have to fight for the VA. I think it's pretty simple. Pick up the phone. Call your Congress person. Say you don't want the VA to be dismantled. Where are the bills to strengthen and improve the VA? Where are they? Why don't you write one, Johnny Isakson?

Eric: That's good. I'd like you to get to read a little bit from this book. I think we've basically picked out a similar passage. This is a section about mindfulness training for veterans.

Suzanne: The twelve-week mindfulness training I'm attending takes place in distinctly different setting that the usual urban setting. It's held in a conference room in building eight, the behavioral health building at the San Francisco VA, at Fort Miley. The group of veterans in their fifties and sixties who come here are not here for an intellectual or spiritual exercise. For some of these men, becoming better able to control their thoughts and anxieties through mindfulness is literally, a matter of life and death.

Dressed in spanking fresh jeans and a starched white shirt, Harvey holds himself steel rod, straight. He speaks deliberately, each word clip, sharpened, as if surrounded by barbed wire and warning signs advising people to keep their distance. His cross to bear is obsessive compulsive disorder along with 10 years of being homeless.

Ronald, an African American veteran, is almost his opposite, supple, fluid and easy with jokes. Yet, he is experienced similar struggles with homelessness, poverty and divorce.

James has struggled for years with panic disorder. He will find himself in a supermarket or on a bus, suddenly overwhelmed with anxiety. He feels he will have to get out, right now, or he will die.

More?

Eric: That's great. So, Eric and I both work in the VA and we know that when we work with journalists, often, we have to go get permission to work with them and sort of, go over the outlines of what we might talk about. Is that something, when you were planning on doing this book ... I'm sure you worked with the VA Press Office and Central Office, as well. We're there any constraints placed on your reporting?

Suzanne: No actually, not at all. The only constraint has been when I've gotten in when they said I could get in, that we had to ask patients permission for me to be there observing, or ask patients if they'd talk to me. I'll tell you a really funny story about how willing patients are to talk to me. I have almost never been refused. Maybe once or twice over the past three and a half years.

But I was sitting ... Okay, wait .... let me. I think that the issue of public relations and the story about the VA getting out, I think at the very top of the VA hierarchy, there's very, very poor, in my experience, public relations efforts to let people know about the system. They're up against a lot of odds. Most VA healthcare systems have one, two, three, maybe people in the public affairs office, whereas the academic affiliates that they are working with will have 50, 100. They are out there promoting all this stuff.

The VA could do such a better job of promoting itself. You're doing so much amazing stuff. There's a failure to explain that this isn't just for veterans. The models that you're developing, the research that you're doing is for all of us. When you show the efficacy of palliative care and geriatric care, you're not just saying that there's little bubble of veterans that die a certain way and that isn't applicable to all other Americans. It's really important to pitch the VA, which is why I'm so interested in the VA, and passionate about it, as something we all benefit from. It's developing models of care that only other European healthcare systems and other national healthcare systems develop because of the alignment of the correct financial incentives.

There is a bit of a problem with censorship. People in the VA are not tooting their own horn enough. They need to have more conversations with family members and friends and churches and everywhere they can. The thing that you have to show is what you're doing is not just for veterans. It's for all us. That's really important. If we lose the VA, we lose models of care. All of us lose these models of care. It's not just veterans that are going to suffer.

Eric: We lose one of the most important educational venues out there in the U.S. and research venues putting out exceptional papers. Not just on models of care ... You talk about prostate cancer and all these other important research articles, coming out of this system.

Suzanne: You have the Million Veteran Project or program, which is looking at genomics and its impact on health, the shingles vaccine, the first implantable heart pacemaker, on and on and on.

I wanted to tell you this story. I'm not sure if you can put it in. I was sitting downstairs in Fort Miley, the VA hospital in San Francisco. I was at lunchtime and it was very crowded. A veteran sat down next me and asked if he minded if he joined me. We started chatting and I told him I was writing a book about VA healthcare. He said, "Oh my God. You've got to go over to City College to their Veterans Resource Center there. They helped me so much with my bipolar disorder. I can't tell you how much they helped me." I wasn't going to ask him about his bipolar disorder. Then we started chatting and he's telling me all about how wonderful these resources are for him. A guy next door listens in and says, "Oh, come on. You have to come over and talk to me." He starts telling me, "I have PTSD and I was beating my wife. I went to the VA. I came here and I'm doing all this therapy. Now, I'm not beating my wife anymore and she's so happy." Then another guy walks by and hands me a napkin with his phone number on it.

What I felt was, this was really amazing. What the VA has done is create a safe place for people who feel they can approach a journalist and say talk to me about my mental health problems. This is just unimaginable in any other place I've ever reported in. That shows the extraordinary accomplishments of this healthcare system.

Eric: Wonderful. I want to thank you for joining us today. Alex, do you want to end with a little bit of a song?

Alex sings “Have you ever seen the rain?” by John Fogerty.


produced by: Sean Lang-Brown
by: Alex Smith
Read more »

Saturday, July 22, 2017

Bringing Community Partners Together to Improve the Care of Older Adults: An Interview with Anna Chodos



For this week's podcast, we interview Anna Chodos, Assistant Professor in the Department of Medicine and Division of Geriatrics at UCSF, about her work in creating the Optimizing Aging Collaborative. The collaborative's goal is to enhance and unify care of older adults in the community by creating a unique partnerships between public, human service, and academic organizations.

The Optimizing Aging Collaborative at UCSF, which was founded in July 2015 as a Geriatric Workforce Enhancement Program (GWEP) by the U.S. Health Resources and Services Administration (HRSA).  The collaborative includes a broad array of experts to provide education and innovative services that address older adults’ health, social, and legal needs, that hopefully other cities can replicate.

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: And, Alex, who is our guest today?

Alex: Today we have Anna Chodos who is Assistant Professor in the Department of Medicine and Division of Geriatrics here at UCSF. Welcome to the GeriPal Podcast, Anna.

Anna: Thank you for having me.

Eric: Before we start off every podcast we asked our special guest to give Alex a song to sing. What song is it today?

Anna: It's Operator by Jim Croce. It's an oldie, but goodie.

Eric: And I heard you're gonna sing, too?

Anna: Yes.

Eric: Okay.

Alex: Alright.

Alex and Anna sing “Operator“ by Jim Croce.

Eric: Wonderful. So, Anna, we invited you to come on today to talk a little bit about what you're doing with something called the GWEP. Many of our listeners probably have never heard of that before.

Alex: GWEP?

Eric: GWEP? How do you pronounce it?

Anna: There is a linguistic divide in this country that some are GWEPers, some are GWEPers.

Eric: Yeah, is it pretty polarized?

Anna: It gets a little heated. The last national conference was a little rough.

Eric: So what is the G-WEP/GWEP?

Anna: We are a faction of this country brought together by a funding opportunity at HRSA to fund geriatricizing primary care and social services in this country to better serve older people. I think many of us may be more familiar with the idea of big G, little g geriatrics and this is really trying to hit hard on the little G geriatrics of getting geriatrics knowledge and skills into more people in the health care workforce. And, in this case, also the social service workforce, without necessarily only focusing on developing big G academic geriatrics or specialty geriatrics.

Eric: And what you're doing is you're doing both. You're doing teaching here at the academic university, but what's really interesting is you're also bringing this out into the community and working with a lot of community partners to deliver primary geriatrics and primary palliative care teaching to them. Is that right?

Anna: Yes, and other GWEPer, GWEPers will feel similarly that the call for this funding really incentivized people to do that, to be creative, to do integration between health care and community. And everybody's has looked different. There are 44 across the country, so many states have them, many cities have them, but it really incentivizes us to create reasons to work together, reasons to improve care for older people across those two service areas for older people. And the way it looked in our world, and I think probably ... I've not been here that long, but what I understand is that a lot of us have been working with community partners for a long time to try to improve care for older people or get more services for older people.

That's just such a part of what we do and how we keep older people healthy and well in the community that there was a lot already there to build on. But the really wonderful thing about this particular program now is that that's what we're supposed to be doing is working together, meeting regularly, having shared goals, having shared vision and outcomes around improving care for older people. So we work with Alzheimer's Association. We work with other non-profits like here in San Francisco, Open House, which serves and runs programs and does housing for older people who identify as LGBTQ. We work with Homebridge, which is a training organization for caregivers, usually funded by in-home supportive services. And we work very closely with probably the biggest partner, which is Department of Aging and Adult Services, which is our triple A here in San Francisco, or the way most of our social services are coordinated for older people, especially low-income and vulnerable.

The reason some of those partners are part of this particular program is the people we serve. Here in San Francisco we really wanted to make sure that any programing we were doing in any girding of our system and safety net for older people was gonna address the people that we have here and that's largely immigrant. Over half are three times the federal poverty level or below, which here is significant because it's a very high cost of living area. Of course, very notable and proud LGBTQ community. We also have about 30% of older adults who live alone.

And then a big call within all the GWEPs was to try to focus on adults with dementia and related diseases, so we've done that as well, but that's certainly a natural focus for us. We know that those are vulnerable older people. Hence, partnerships with Alzheimer's Association, DAAS, and Open House.
Eric: What do these partnerships actually look like? What does it mean to partner with someone?
Anna: Lot of exciting emails. No. Really it means meeting, it means going to their organizations, it means talking openly about how can we both do things that will advance our shared goals. Should we look for funding together? Like, working together.

Alex: Could you give an example?

Anna: Yes. And then the other thing is, sorry, is, of course, we do a lot of trainings together. We actually work on developing the bread and butter of what we're doing and trying to build competency in working with older people is knowledge transfer or teaching. We can probably end up talking a lot about whether or not that's the only thing we need to do, but that's where we're starting for the most part. And so we're working a lot with, for example, Alzheimer's Association and us to train another partner organization.

Sorry, we actually have so many that sometimes I forget to list them all. Little Brothers Friends of the Elderly, which is an international, or at least national organization that is a volunteer visiting program for isolated seniors. With them, Alzheimer's Association and us we sort of take turns and collaborate on training on topics, specifically more related to dementia and helping them work through a program that they're developing to address the needs of older adults living alone with dementia.

Because that has previously been challenging, especially when people don't have the skills or feel intimidated, as it were, by working with older people with dementia, and they know that's a highly vulnerable group so they were really invested in learning more about dementia and how to work with people with dementia and develop a program within their own organization of being able to do more outreach to them. They have a name for this program, Elder Navigator. They're working with other faculty at UCSF. It's a big program with a lot of tentacles and we get to get in the mix and help do some of the education and competency and self-efficacy building around working with older adults, so that ultimately those older adults will get more connected.

Eric: So there's a lot of talk in geriatrics and in palliative care about doing primary geriatrics or palliative care, which is often teaching primary care doctors and frontline health care professionals about how to deliver either one of those topics.

Alex: Although I think there is a distinction there in that when we talk about primary care, palliative care, it's usually like the primary care physicians or the oncologists. It's still a layer of, for the most part, physician specialists we're training.

Eric: Yes, and not community providers.

Alex: And not community providers, so this is somewhat distinct. This is almost a different level. It's like there's tertiary, secondary, primary, palliative care, and then very like what is zero?

Eric: Or maybe it goes to quaternary, like it's the top level. The thing that all of us should be trying to achieve or strive for is actually getting out of just this ivory tower, the physician's office, and into community partners 'cause they're the ones delivering the most amount of care.

Anna: Well, the thing that we've heard a lot and is, to me, totally at once sort of mind blowing and inspiring is the people who are absolutely on the front lines. In our community we have a bunch of, oh boy, aging and disability resource centers and these are meant to be little community hubs that people can walk in and get hooked up to resources or learn about stuff. Not necessarily get enrolled and do a bunch of paperwork, but just get some information. And a lot of the absolutely front line people feel like they need more help knowing how to work with older people. Just the basics like how do I talk to somebody who constantly comes in and tells me she's worried that they're poisoning her water? What am I supposed to do about that? Who am I supposed to connect with? How should I be responding?

Alex Can I ask a question?

Anna: Yeah.

Alex: How should they be responding?

Anna: Buy lots of bottled water and ... No! One thing is you need to know what the community mental health resources are. You need to be able to respond affectively and not necessarily to the content of a delusion. I know there's some skill there, but understanding that the person, if they weren't doing that the week before might actually be ill and reaching out to others to see, "Hey, maybe you should go see your doctor. Where is your doctor?"

But just the basics of what's dementia and how is that different than normal aging. It's not normal aging. Some of these pretty basic concepts. How might a mental health disorder look differently?

Eric: In an older adult.

Anna: And then again, we're all constantly learning about new resources from each other and the partnership. Through meetings, through having discussions about new training needs that we've identified because we did a training and somebody came to us saying, "Oh, we'd love another training in x, y, z." Talking to partners and then finding out, oh, there's this other organization that works on training people on pulse forms or advanced directives.

It's actually been really humbling to realize as a provider I do general primary care and geriatrics. I often feel alone, like why aren't I getting this person connected to services or even social workers who I work with constantly are having trouble. And then I talked to some of our partners and realized there was 10 other things we could have tried to connect that person to.

So I've realized we actually are in a, particularly here in San Francisco, a resource-rich place. That's not necessarily our problem, but the connections aren't happening and sometimes some people aren't recognizing things like maybe elder abuse or self-neglect or early dementia and aren't connecting people early enough or helping out enough. 'Cause a lot of times people hand you a pamphlet and say, "Call this place to get a caregiver," and there's a missed connection and nobody ever figures out why and it's because they have undetected cognitive impairment or whatever it is.

So I know I'm saying a lot of words, but I think generally the thing we're learning is that people want to serve older people really competently, really well, of course. Everybody who's gone into a social service field or a health care field has pride in the work that they do and wanna be doing a good job. But there's a lot of missed opportunity with older people not knowing what you don't know about very common things that affect older people and how you could connect them.

It is less glamorous than richly physiologically describing or medically describing a geriatric syndrome, but a lot of this basics and social service resources is extremely helpful and we get a lot of great feedback from people when we're able to train them.

Eric: We're probably not alone that we live in a city where there are these resources, but many of us, including myself, may not know what they all are. Do you have any hints or tips or tricks or lessons that you've learned over the course of the last couple years on how we can build those connections?

Anna: I think one is, and we're certainly doing this now, is a bit of inventory. Spending some time learning what's out there. I think some cities have done a better job in terms of creating usable central resources and I know that that's in motion and that's by no means our work. But encouraging social workers ... So a lot of places aren't gonna have geriatric social workers. We don't. So encouraging them to learn a little bit more about key issues with older adults and that would be particularly caregiver services and eligibility. Things to keep them independent in the community because that's what matters to older people, or adult day health programs, and long-term care issues.

That comes up a lot and you'll often get people saying, "Okay, well. We were thinking this weekend we would put her somewhere where she can be cared for better than we can care for her," and you're like, "Well, that's gonna be six more months." But encouraging people to learn ... I think people have to know what they don't know and know that they need to ask and learn. Of course, we like to show up and offer to do some teaching, too, and leave behind some resources.

Alex: Yeah, some would say, "What are you, a doctor, doing, doing this? What isn't this the domain of social work?" What's your response to that?

Anna: I think it's, for most of us in geriatrics, we know that the social determinants of health are half of the battle in terms of keeping people well and having a high quality of life. I don't think we can shut that out. I also think it means a lot and sometimes takes a lot to get to a place where some of these big resources are needed, so let's talk about what another living arrangement might look like or let's talk about what taking away driving responsibility might look like. And I don't think ... I agree ...
First of all, none of us have time to do all the things we're supposed to be doing in primary care and we all know that. So to add on, "I'm gonna counsel you now on caregiver educational strategies for dealing with dementia behaviors," which, at end of the day, is the most important thing you could do for that person and that family if there's dementia behaviors, is just not feasible and practical. But if you don't even know where to start, you're definitely missing an opportunity. I think you need to have at least a passing knowledge of some of these things 'cause it is the biggest issue facing that family and that patient, and the biggest thing you could do for that person's well-being is probably to address some of that stuff.

Alex: But really why a doctor?

Anna: Well, I'll give you an example. When I went to ... Not from my work, but from my personal life. When I went to my follow-up with my primary care physician, I followed up diligently for something that was no longer a problem so I basically sat down and told her that and she as like, "Okay, well, I guess we're done." And I agreed. She said, "So we have about 15 minutes. Could I ask you some questions?" And we literally reviewed two cases that she had coming up that afternoon of 90 year olds that she didn't know how to address. Not medical stuff, of course, social stuff.

One, she wanted to talk about driving. Another one, she wanted to talk about safety at home. And this is why. She has 30 years of primary care experience on me, but this is the issue most affecting the care and well-being of her ... Well, maybe not most, but my assumption. But clearly affecting the well-being of her patients and she doesn't know how to manage it. So that's why I feel like the little G geriatrics, getting that into primary care, is definitely important, and for us that does include the social stuff for sure.

Eric: It's interesting. We've got palliative care, we have primary, secondary, and tertiary. And geriatrics, we have big G, little G.

Anna: Yeah, it's a little simplified.

Eric: That's great. The big G geriatrics being like the academic geriatrics for the most part.

Alex: I guess big P, little P does not sound ...

Eric: Yeah, it doesn't. No, but here's the other [inaudible 00:17:38] we're talking about. Is it G-WEP or GWEP? Is it palliative or pa(ae)lliative? I think the key there is if you're from the United States, it's palliative. And if you're from Canada, it's pa(ae)lliative.

Alex: Like a pail.

Eric: Like a pail. But I don't think that's a hard and fast rule.

Alex: Yeah, maybe we should change this podcast to GeriPail.

Eric: That's what we should do.

Alex: For all you Canadians out there.

Anna: Welcome to the GeriPail podcast!

Alex: GeriPail podcast.

Eric: Wait, Anna, I have a question for you. You're getting funding to do this through GWEP?

Anna: Yes.

Eric: So what can you say to our listeners out there who are not getting funding to do this through GWEP?

Alex: Aside from get funding.

Eric: Right, aside from get funding. What would you say to those listeners?

Anna: Yeah, and I'd also say that is the generous and wonderful nature of this project is that it has allowed for that because I know, historically, that has not been the case and probably a lot of the reason why some of this work wasn't done before, 'cause it's not like people didn't know it needed to be done or weren't hoping to get it done.

One thing, actually, I'd recommend is all of the GWEPs, most of us have great websites. Okay, we're still working on ours. Www.optimizingaging.org.

Eric: Oh, I like that.

Anna: Thank you.

Alex: Do you know that you don't have to say the www anymore?

Anna: Yeah.

Alex: Yeah, I'm still doing that, but the young kids, they don't do that anymore.

Eric: No, they say “http//….”

Anna: They're more completist.

Alex: Optimizingaging.org.

Anna: Yeah, optimizingaging.org. Who engineered getting ... Anyway, I should look into the history of that. So a lot of us have great materials. Modules, like videos, handouts, ways to educate yourself. I think there's still an element of knowledge transfer that needs to happen. And then the other thing about the GWEPs that's been really interesting is they encourage a, they call rapid cycle quality improvement methodology to that work. In the areas where we are contributing to systems change to help formalize some of the knowledge and improved little G activities, we sort of try to rapidly, both implement a change, study it, and improve it.

There's a lot of materials around how to do a screening in your clinic. How to incorporate a quick fall screen and then incorporate a nurse specialist in geriatrics to manage falls and positive cognitive screens, things like that. Already in our two years, so limited experience, working with three different primary care settings and, within that, very different clinics. Everybody's approach is different.
There's no one solution for a primary care clinic because they're all so different, they all have different patient populations and they all have different workflows. So this is where, potentially, it gets a little dry for people to think about, but that's where the rubber meets the road. How are you gonna screen for cognitive impairment, in who, and how are you gonna track that, and then how are you gonna follow up on that, what does that look like? That's another big part of what we do.
I think a lot of the GWEPs have a lot of those materials online and that's actually the focus of our last year is to develop train-the-trainer materials so that we can expand our reach a little bit and empower organizations and primary care settings to train somebody within and have materials and then to really beef up our website and materials that people can use. So all of this is the federal government funded us to do it so we want people to have it.

Eric: I wanna back up a sec. Did you say we should be screening for cognitive impairment in primary care?

Anna: I did not say that. However, some places wanna do it and I salute them because I think it's a wonderful idea. I will say that that is actually one of our projects is not working with primary care, working with the community. Our Department of Aging and Adult Services and their in-home supportive services division, which is the caregiver division, so you have to have a functional impairment to get a caregiver, is gonna be screening everybody for cognitive impairment.
So one of our parts of our program was to help work with that idea and figure out how you could do that. How you could get that information through their system appropriately and have appropriate quality control and further evaluation as needed within their own organization and then feed that back to primary care, which is their goal. They felt really strongly that they wanted to see this better addressed and I think that's amazing because that's really gonna ... If we can reach those primary care doctors, which is part of our role to help them think through that and hopefully do it well, how are they gonna respond to that information?

Eric: Has that rolled out yet?
 
Anna: No. It's rolling out the beginning of the next calendar year, but it's pretty amazing, especially considering they have 22,000 clients.

Eric: Wow.

Alex: Aging and Adult Services?

Anna: Yeah, and the in-home supportive services, yeah.

Eric: Has 22,000 clients?

Alex: And all 22,000 will have cognitive screenings?

Anna: That's kind of the ideal, like they have a regular intake. However, obviously, I learned that you're not supposed to screen people who already have something, so things like that we won't need to screen people.

Alex: Right, right. If they already have dementia, then there's no need to screen them.

Anna: Presumably. Although, it's not ... The whole point is probably a lot of those people are undiagnosed.

Alex: That's probably a better target population where screening might make sense rather than a general primary care population because Aging Adult Services sees people who are highly likely to have cognitive impairment. But then the other tricky thing is then is there something you can do about it? What will the primary care doctor, once they know their patient has cognitive impairment, what will they do? How will that influence them? And then can you give them the ... What should they do?

Anna: Well, then the thing I hear from primary care is, "We don't have anywhere to send them. We don't have time to do an evaluation. We can't do anything about cognitive impairment anyway." So it depends on the setting. For some of them, we have developed like, here's how you work out cognitive impairment in our system. So not a theoretical, up to date article, but in here's who you might ... Like, click on this button to order this lab, like a very specific algorithm. Here's who you might refer. And then someone like me is very interested in using that information to advocate for more resources to address cognitive impairment and make a, as comprehensive as we can, care plan. 'Cause I personally don't agree that you can't do anything about it.

Eric: Are there one or two most salient lessons that you've learned over the course of the last two years of bringing little G out there in the community?

Anna: Yes. In our short time, we have had a tremendous experience. First of all, realizing how grateful people are for some knowledge addressing these topics, that they're really under-addressed. And how eager people are to be incredibly competent and good at what they do, so it's really well-received. And we have definitely, almost at every point, identified more need. I think we certainly have that feeling, who knows how far it will go, but of a tip of the iceberg kind of feeling of the need for this kind of knowledge and competency building.

And then the other lesson, clearly for us, has been the joys of partnering with people who are so committed to making sure older people have joy and dignity in their lives no matter where they are, no matter who they are, no matter what resources they have. So working with all of our amazing partners like Little Brothers, Homebridge, DAAS, UC Hastings that help us do medical legal practice work, Alzheimer's Association of course, social work schools, our nursing schools here. So on the academic side, everybody.

From the partnership side, we are just starting to evaluate that and asking people. They say that even in a field that they've worked for a really long time, the fact that we're all partnering together in this effort has opened more doors for them. And I think I'm more and more convinced that there really isn't enough resources to build the big G and that the little G is very much worth our time.

Eric: So what's next for GWEP?

Anna: Well, we have some big hills, not unknown to us here in beautiful San Francisco. But the big hills are, obviously, how sustainable and how real is federal funding gonna be for this sort of thing because-

Anna: Correct. But, yeah, his budget was not friendly to this idea of continuing to fund such programs so we are obviously carefully watching and advocating for ongoing funding for stuff like this. But for us, really, personally, as a program, our next is how far out should we be going. So if you look at other societies, communities that have other values and other organizational structures. Japan, Singapore, even frankly places like Utah where there's this tight social structure. There's a lot more lay people involved in detecting and addressing issues with older people and their idea of what you need to be a competent society to, again, bring joy and dignity to the lives of older people in their every day is bank tellers need to know what's going on because they make mistakes at the bank. Post office guys need to know what's going on because they're the ones who actually see older, isolated people.

There's a lot of amazing lessons to be learned there and I'm certainly passionate about that kind of work and how much I convince people who fund academic geriatricians to be doing that kind of stuff is really fascinating to us. And you guys think about the primary, secondary, tertiary, and I think we think of more of a nesting dolls concept of how many rings out are we gonna go in touching our community, making sure they're competent.

And probably the farthest out we've gone, and in collaborating with Brie Williams and her amazing work, is with our police department here in the city because they respond to a lot of crises with older people and making sure they know that there's certain considerations, like behavioral disturbance and dementia, that aren't criminal activity. Working with them in the context of a crisis intervention course and doing trainings was something that Brie Williams started, who's very involved in criminal justice.

That's as far out as we've gone other than we do do ... I just came from a talk at a community center with older people, just talking with an older woman's health group. So that's, obviously, really important, too, to empower people and their caregivers and family, but we love to think really broadly and build more partnerships.

Thank you guys.

Eric: So how about we end with a little bit more of the song.

Alex and Anna sing “Operator“ by Jim Croce.



produced by: Sean Lang-Brown
by: Author's First and Last Name goes at end of post
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