Tuesday, August 22, 2017

How to have a code status conversation with Laura Petrillo and a live studio audience



by: Alex Smith, @AlexSmithMD

In the summer we usually cover a basic topic for the early stage learners, i.e.the new crop of medical students, residents, and fellows.  See prior posts about how to explain palliative care, how to explain palliative care and how to explain hospice.

This year we address: How should we discuss code status?  (And bacon).

Context: New interns around the country are asking patients about code status on the day of admission to the hospital.  Many of them are trying out language and approaches to these conversations for the first time.  New palliative care fellows are trying out their own language.  What are they saying?  What should they be saying?

To address this topic, we talk with Laura Petrillo, MD, a palliative medicine-physician researcher who trained at UCSF and is now faculty at Massachusetts General Hospital.  We additionally have a live studio audience, including Anne Kelly, palliative social worker, Kai Romero, palliative medicine fellow/emergency physician, Jessi Humphrey's, palliative medicine fellow, and Jessica Neil, geriatrics fellow.

The structure is presenting real world code status language to these guests for comment.  Such as:
-"They were DNR before hospitalization, but then I asked them about each component of CPR, and they said they wanted light chest compressions."
-"What if your heart stopped and you needed CPR, what would you want in that case?"
-"What if you were dead, would you want the doctors to attempt resuscitation?"
-"On the one hand, we could press on your chest, probably crack some ribs. Might be very painful. We could use electricity to shock you, which is kind of like being kicked by a donkey. We can hook you up to a breathing machine that you may stay on for the rest of your life. Or we could allow you to die naturally."

Some highlights:

Kai Romero: The way that I've recently been conceptualizing it is like the standard of care in modern medicine, if you walk into a car dealership, is to offer you a semi-truck. Most people don't want a semi- truck. Most people want a used Honda. And so starting with the semi-truck actually doesn't capture the majority of what most very ill people want, and so starting from the framework that it is totally normal to want a Honda is where I want to start the conversation, meaning not existing in an LTAC on a ventilator for the remainder of your existence. Or whatever it is. Or dying in the ICU. That's how I've kind of started conceptualizing it for myself.

Laura Petrillo: I think our goals of care conversation is like learning about someone's dietary preferences. And if you have a really full conversation with someone and learn that they're vegetarian because they care about the environment or from some moral reason, then as a provider, when you have that conversation and you truly understand where they're coming from, you can make a recommendation and say, "You know, I don't think you want to have the bacon for dessert." Whereas  in our current system, with CPR as the default, without asking anyone, is just like forcing everyone to have bacon for dessert. What I think would be ideal, is to have that full conversation, really understand why someone's a vegetarian, and then make a great recommendation for a perfect tofu dish.

Eric: I didn't know bacon could be a dessert.

Kai Romero: I was gonna say bacon for dessert is just sheer insanity.

Laura: Well the point is it's superfluous, it's excessive. It's like a little much, bacon for dessert.

Eric: And awesome!

Laura: Eric's full code.

Eric: Default me all the way if I get bacon!

Announcer: The GeriPal podcast is supported by bacon.





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Transcript of the Podcast:


Announcer (Anne Kelly): Today's GeriPal podcast is being taped in front of a live studio audience.

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 Laura Petrillo, who is a graduate of UCSF, UCSF, UCSF.

Eric: That's a lot of UCSFs.

Alex: Finishing her research fellowship, after finishing a palliative care fellowship, after finishing residency, after finishing medical school. All UCSF. And sadly, she's leaving us to go to Massachusets General Hospital where she will-

Eric: Aw, boo!

Alex: ... take a job as a clinician investigator.

Eric: I mean, good for you.

Laura: Thanks for having me, guys.

Eric: Alex-

Alex: You're welcome, Laura.

Eric: ... I see a couple other people in our studio today.

Alex: We have our first live studio audience today. I'd like to introduce them. So we have Jessi Humphreys, who's a palliative care fellow. Just joining the service. We have Jessica Neil, who is a geriatrics fellow. Welcome to the GeriPal podcast, Jessi and Jessica.

Jessi: Thanks for having us.

Jessica: Agreed.

Alex: We have Anne Kelly, who just caught a falling microphone stand, who is a social worker on hospice and palliative care service. Welcome to the GeriPal podcast, Anne.

Anne Kelly: Thank you.

Eric: And our new introduction voice, by the way.

Alex: Yes. We'll have to bring you back for that for our future live studio audiences. And we have Kai Romero who is a graduating palliative care fellow and she's also an emergency room physician. Welcome to the GeriPal podcast.

Kai Romero: I prefer the term Emeritus, thank you.

Alex: So we usually start ... Eric, what do we start with?

Eric: I think, Laura, you have to pick a song.

Laura: So I was thinking maybe we could go with Bee Gees, "Stayin' Alive".

Eric: Why the Bee Gees?

Laura: Well, when I was taught to do CPR, as I understand we'll be talking about CPR today, I was taught to do it to the beat of "Stayin' Alive", which is the optimistic song choice as opposed to "Another One Bites the Dust".

Alex and Laura sing “Stayin’ Alive” by The Bee Gees.

Eric: Nice. So what's our topic today?

Alex: So today's topic is how should we have CPR discussions. Right? It's critical to use the right language there. Why is it critical to use the right language? I think because patients and family members hear every word that we say, and they hang on those words. Language is important with these conversations. These are high-stakes conversations. They happen every day in the hospital, particularly on the day of admission.

The structure of today is: I'm going to throw out some language that I heard while I was attending on the palliative care service over the last few weeks, and we're going to get reactions to it. And Laura's going to get first crack. So to start, I was called by a medical student who said to me, "You know this patient came into the hospital, and they were DNR. But then, when I went through each element of CPR, there were some things that they wanted. They wanted light chest compressions and they wanted pressers."

So how do you react to that? How would you give that medical student feedback without your head exploding?

Laura: Yeah, well there's a lot to pick apart there. I guess this kind of gets a little bit into the question of a la carte and offering a la carte interventions as part of the code status interventions.

Eric: I kind of want light chest compressions. It sounds very comfortable!

Laura: And what is that, really? Light chest compressions? It sounds more like a massage.

Eric: It's like a massage.

Laura: Kind of like an external-

Eric: A Swedish massage, maybe?

Laura: ... kneading of the sternum. Anyway, yeah, so a lot to say there. I think to the student's credit, he attempted to find out what the patient understood about what this would mean as an intervention for their healthcare, and so kind of went through the items of what to expect, rather than just saying, "Do you want us to save your life? Yes or no?" and then check box and moved on. So let's give him props for kind of going through what that entails. But then, thinking about the other parts of it. You know, talking about light chest compressions, there's not really an ... Chest compressions and codes are kind of all or nothing. There's chest compressions, intubation involved, and we generally think about not breaking those things up and offering intubation alone, for example.

Alex: Now are there situations in which it would actually make sense to break them up? Like, for example, I can think of a patient who has COPD who has been intubated before and might not want to be resuscitated if their heart were to stop. But because they've been through intubation before and gotten out of the ICU, maybe it would make sense for them.

Laura: Yeah, so I think it's very clear that intubation, mechanical ventilation, and resuscitation are different things. There's one direction you can go and one direction you can't go. So you can be DNR, meaning you don't want chest compressions and intubation. Okay. But we don't let people be DNI alone, but then they want chest compressions. And this is because if you have someone who has a hypoxic arrest, and the thing that's causing them to have cardiac issues is their pulmonary system, you're sort of doing a very ineffective code to do chest compressions without intubation and mechanical ventilation for that patient. And so you're basically just flogging them without benefit.

But the other way around, there are many, many situations where mechanical ventilation will be beneficial short of the patient reaching a point where their heart has stopped as a function of their respiratory status. And so it's actually kind of a bit of a ... I don't know if it's a historical accident, but somehow these things have gotten very much bundled together, I think because of the first scenario I described. But patients should certainly be able to have intubation without having chest compressions.

Kai Romero: So I will say in the emergency department, where we intubate people in sub-optimal situations all the time ... they've all just eaten burrito, they're all hypotensive ... that one of the conversations we have to have is if people have made decisions around their DNR status, it has to be with the awareness that it's not uncommon to code during intubation. And so when we have hypotensive patients coming in, we're often starting them on pressers in order to intubate, because they're already hypotensive. We have to start from the framework of, "It sounds like you want to do this intubation, and we can talk about trials or whatnot later, but there's a chance that you will die during this procedure." And parsing that out before the intubation procedure happens, because if that isn't parsed out, they end up with the full kind of five-alarm code.

Laura: I think that's a really good point. I mean, what you're bringing up is that when you talk about these interventions, a lot of it is context-dependent. So an event that happened where someone was at a point where mechanical ventilation would be helpful, that happened out of the clear blue sky, versus having an intubation and then having a cardiac event happen as a function of the iatrogenic intubation is a different story. And it's sort of related to surgical ... talking about DNR in the context of surgical procedures.

Alex: Weirdest code status I ever saw when I was as a night float, as a resident: one shock. Just the one shock, please!

Eric: So Alex, do you have another example of what you heard recently?

Alex: Yeah, here's another one I heard last week: “What if you needed resuscitation?” What are your thoughts about that? What if you needed resuscitation?

Laura: Yeah, this is a tough ... another kind of language issue. So you're putting a lot of presupposed shared values into the way that you discuss resuscitation in that situation. So it's as though your body develops a deficiency, and everybody agrees that resuscitation or intubation is the remedy. But not acknowledging the preference sensitivity of that, and just acknowledging that, you know, a perfectly reasonable choice would be to focus on comfort care in that situation. So you're creating a situation where people feel like they need to, but they're missing out on something that is the indicated response to a deficiency.

Eric: So what should we ... I find need an incredibly ... I think I try to be mindful not to say it ... Like "if you needed to be intubated" is one that I come across often in my own language. Like, what should I say ... How should I say that differently?

Laura: I would say something to the effect of, "If you were to become unstable."

Eric: I'm very unstable, by the way. So I've already reached that point… [laughter] It's a hard one.

Kai Romero: I also think framing it as, "If your breathing were to get so bad that you could not breathe without the assistance of a ventilator." So it's not about-

Eric: Need?

Kai Romero: ... need so much as really kind of framing it around the ventilator, around the intervention. Because I don't know, for me "ventilator" feels like a more powerful term, sometimes, than "intubation." "Intubation" sounds like, "Oh, it's just a little tube, whatever." But a ventilator appropriately conjures the sense of you being attached to a machine.

Eric: And let me get this straight: I don't need to be intubated if my main goals are to be at home and to die comfortably at home? Is that what you're trying to say, too?

Laura: Yeah, well, I mean, it's more that ... Let's see.

Eric: Like, somebody doesn't need something, if it's inconsistent with their goals and desires.

Laura: Yeah. Absolutely. And I think, too, there's the feeling of letting down the physician, or like going against the program, or bucking the system, or something where you feel like you need to ... It takes more strenuous disagreement or something than having a perfectly valid preference that ought to be described in its full ... have a full description of what that would look like.

Kai: The way that I've recently been conceptualizing it is like the standard of care in modern medicine, if you walk into a car dealership, is to offer you a semi-truck. Most people don't want a semi- truck. Most people want a used Honda. And so starting with the semi-truck actually doesn't capture the majority of what most very ill people want, and so starting from the framework that it is totally normal to want a Honda is where I want to start the conversation, meaning not existing in an LTAC on a ventilator for the remainder of your existence. Or whatever it is. Or dying in the ICU. That's how I've kind of started conceptualizing it for myself.

Alex: That's a very helpful analogy.

Eric: All right, so, so far, not a whole list of options. CPR is CPR. Sounds like we shouldn't be using "need". What's next?

Alex: All right, so next is kind of ... I think this is the standard sort of line that most residents would give. I'm looking to Jessi and Jessica to let me know if this sounds right. Something like, we ask all [inaudible 00:11:59] patients on the day of admission, "If your heart were to stop beating, if you were to stop breathing, would you want us to attempt to restart it using electricity, chest compressions, and a breathing tube hooked up to a breathing machine?" Does that sound about right to the two of you?

Jessi: I think that sounds right. I think that's very common. And it sort of speaks to the fact that you can tell that people are in a bit of a rush. And so a piece of that is you can hear Heather combining everything together, asking it in one big question. And they're also thinking about it as an attempt, and they're also conveying a lot of their own personal opinion that it's something that they're expecting to hear "yes" to. And I think patients are looking to us to sort of help guide them. And they know what their goals are, but they don't know how to get there.

Jessica: I will say that I've heard residents normalize both options. So having people say, "I have some patients who tell me that they would want all those things, and I have many others who have thought about this or talked with their families about this and have decided they don't want those things done."

Alex: That's terrific. Any comments on those suggestions? Well, what I think that does is it normalizes both options, and it also gets at whether they've thought about it before. Because that's incredibly important. A lot of people who are really sick have been hospitalized before. Hopefully some of them have had advance care planning conversations in the past, and this is not their first rodeo - this is not the first time they've been asked about this. And so they may have previously established preferences. They may have already talked to family about it.

Jessi: I would say that, with the exception of people who've already had conversations, either with their family or palliative care doctors, I've met very few people that say no to "Do you want us to try?" And so it's very leading in that sense, 'cause you're like, "Yeah, I don't want you to see me dying and just give up." But I think the problem is that what that doesn't convey is exactly what that attempt looks like, how extensive it is, and how much it may impact the end of their life.

Jessica: And the opportunity cost, like what the alternative could look like. And I think that that's a huge deficiency in just how we talk about this in general. That we don't talk about a positive, you know ... the type of care that someone could receive and what the alternative would be. And it only sounds like something that could possibly help, which is I think the spirit of where people come from when they're thinking about this, and where, you know, the Institute of Medicine comes from, the American Heart Association comes from, in kind of promoting CPR as something that will be helpful. But at the same time there's a need to really flesh out the rest of the alternatives.

Eric: It's hard, too. Because the more I practice in this area, the more I realize it's probably actually not the code, the 50% who die during the code, that have the most suffering. It's what happens if you survive the code but you don't survive well enough to actually make it out of the hospital or make it out of the ICU.

Laura: I do want to go back to what Alex said, though, and point out the positives in that statement. I do think there were actually a couple of nice things that were there. One is not saying, "Do you want us to try to save your life?", which is kind of what you hear, and get an eye roll a lot of times. That's kind of a misleading way to talk about it. And then, on the flip side, too, for people who think that it's not an appropriate intervention for the person that they're talking to, they'll suddenly talk about it in terms of "Do you want us to crack your ribs" and do these sort of things in a way that makes it sound really bad. And so you can tell where somebody is ... what somebody thinks by the way that they're talking about it sometimes.

Alex: Ooh, ooh. Let's go there. Okay, here's another one. You ready? "On the one hand, we could press on your chest, probably crack some ribs. Might be very painful. We could use electricity to shock you, which is kind of like being kicked by a donkey. We can hook you up to a breathing machine that you may stay on for the rest of your life. Or we could allow you to die naturally."

Eric: Like in an African Savannah, with a lion jumping at you? Slowly-

Jessica: Sprinting from a hunter with poison-tipped arrows?

I will tell you what my grandmother said when I asked her this question, which was, "So what are you going to do? If I die, you'll just walk around me?"

Alex: That's good.

Eric: That's pretty natural.

Kai Romero: I was talking about this with Mike Rabow, another palliative care doc, about this concept of dying naturally.

Oops. Dying naturally ... Like this?

Eric: Yeah, like that. You can start over.

Kai: I was talking with Mike Rabow, another palliative care doc at UC about this concept of dying naturally. And I think the point that he made that really resonated with me was the idea that the code itself, this moment itself, is actually not often the actual issue. Usually it's pretty clear if ... In the hospital, you're kind of declining ... Occasionally people kind of just randomly code ... But often if you're declining to the point that you might require a code that seems to your whole team to be unnecessary and prolonging of suffering, reframing the question as not ... as if it's clear to your medical team that you are dying. Would you want us to take aggressive measures to prolong your life at that juncture?

And for me what that captures is you're not really talking about, like, your heart stopping ... Like every death ends with heart stopping. But what you're talking about is the period before that, where it would feel cruel or unusual to do aggressive, invasive measures. And trying to get their understanding at that point, which is kind of before you're at the very end. And that to me seemed like a nice framework for thinking through it.

Laura: I do want to check the bias, though. I mean, you did say if you required such-and-such and also, you know, aggressive measures where you might describe it that way when you're not inclined to do it and not describe it as aggressive in other times.

Jessi: I don't know, I think I might describe intubation as aggressive even if it ... I don't know. I think in the conversations that I've had around intubation, I do think it's an aggressive intervention regardless of whether or not you have a good chance of surviving it. But I agree with you, there's a way in which absolutely your bias is coming through. But I don't know. I think that's ... Yeah.

Alex: How about the phrase "allowing you to die naturally"?

Jessi: What does that mean?

Alex: Yeah, do you use that? I admit I've used it, but ... I think I used it, right, the other week, and I felt like it fell flat. I'm not sure that I ever saw that family member again. Any thoughts about allowing to die naturally?

Jessi: It feels to me a little bit like the concept of natural birth. I had a baby 10 months ago, and like going to classes beforehand, there would be all these people talking about how they were gonna have their child naturally. I was planning on having an epidural. Still gonna have a baby - that felt pretty natural to me, but this notion that there's ... I don't know. That somehow like having a child in a whirlpool in the back of a commune was a more kind of natural experience than going to hospital to have a kid. It felt irksome to me at the time.

Jessi: And one question for everyone. I hear both that and also "allow to die peacefully" as well. And I feel like that maybe speaks to some of the natural aspects of it while also sort of conveying the experience of the dying a little bit better. Does that feel to people better or similar in that it's sort of ambiguous, in terms of what's natural and what's not, what's peaceful, what's not?

Eric: I find "natural" probably a little bit more ambiguous? 'Cause does natural include, let's say, opioids to relieving suffering? Or is natural "We'll just walk around you"?

Alex: But are the phrases too manipulative? So, you know, like the breaking the ribs, the getting kicked by the donkey, or you could die naturally. It's pretty clear what the position-

Eric: Getting kicked by a donkey sounds pretty natural.

Alex: Does that cross some border into being too manipulative?

Laura: I mean, do we want to go into the point of talking about defaults, and what it's like to ... You know, how ... Currently we're in a system where the default is to provide CPR, right? Unless someone opts out via a DNR order or if the hospital team decides that it's medically inappropriate or not indicated, which is really pretty rare. And so there's been thought and talk, and there are some studies ongoing about whether to present DNR code status, allow natural death status, however you want to call it, as the default for certain patients, and then give people the opportunity to opt out.

And there's been ... There was a great discussion on a GeriPal blog post at one point about whether it was manipulative to change that default. Because, you know, behavioral economics research all shows that defaults and kind of nudging has a very powerful effect that's sort of independent of having a thorough, exhaustive conversation about values or really getting at the heart of what somebody wants or understands necessarily.

Alex: Right. I guess my bias is I prefer that the conversation be long, extensive, and we start with values, rather than manipulative language that is intended to persuade the patient to avoid something that we would view as a "bad death".

Eric: I mean it definitely feels like if we're manipulating to invoke a recommendation without actually giving a recommendation explicitly. So it's like an implicit recommendation just by the way we talk and frame a specific intervention.

Kai: But I would argue that the system is implicitly deferring to maximal and probably inappropriate care for most people. And so is it therefore like quite so egregious to try and counterbalance that with like a little nudge towards non- ... you know, away from the semi-truck? Like, I don't know. You're trying to counter maximal aggressive intervention on people who will not benefit from it.

Laura: And those are the arguments on both sides. I do want to go back to what you were saying ...

Alex: Say it again.

Laura: Trying to think of what you said that made me think of ... Oh, yeah. Okay, I do wanna go back to what Alex was saying about having a more thorough conversation, because to me that really seems like one of the huge keys and one of the things that's most challenging about these conversations, because they often will happen in a harried way in the emergency room. But Kai has her semi-truck analogy. I have a vegetarianism and bacon analogy that some people may have heard, and I'll just ... If you'll indulge me, I'll repeat it now.

So I think our goals of care conversation is like learning about whether someone ... Having a really thorough discussion about someone's dietary preferences. And if you have a really full conversation with someone and learn that they're vegetarian because they care about the environment or from some moral reason, then as a provider, when you have that conversation and you truly understand where they're coming from, you can make a recommendation and say, "You know, I don't think you probably wanna have the bacon for dessert." Whereas our current system, to provide CPR in the setting, you know, with the default, without asking anyone, is just like forcing everyone to have bacon for dessert.

And I'll also add too that my preference, or what I think would be ideal, is to have that full conversation, really understand why someone's a vegetarian, and then make a great recommendation for a perfect tofu dish as opposed to just saying, "Now that I understand why you're a vegetarian, let's not do the bacon." 'Cause there's nothing there for you. Like, "Let's recommend a delicious tofu dish."

Kai: Also, bacon-

Eric: I didn't know bacon could be a dessert.

Kai Romero: I was gonna say bacon for dessert is just sheer insanity.

Laura: Well the point is it's superfluous, it's excessive. It's like a little much, bacon for dessert.

Eric: And awesome!

Laura: Eric's full code.

Eric: Default me all the way if I get bacon!

Alex: All right, here's another one: “What if your heart were to stop beating, you were to stop breathing, and you were dead? What would you like done in that kind of situation?” What do you think about that? “And you were dead. And you were dead.”

Jessica: Does anybody do that? I do that.

Jessica: I have actually said "if your heart were to stop beating, and you were to die".

Alex: Uh-huh. Yeah. So tell us why you use that language?

Jessica: You'd be shocked how often people don't know what you're talking about. So to just say "your heart were to stop beating" ... We know we're saying that you died, but people don't always know that.

Kai: I think to people your heart stopping sounds like a little speed bump on the way to your heart beating again. Like, oh, if you had a little blip, heart stops, and then you just do some stuff, and it's back. That doesn't accurately portray, I think, what's happened. Yeah.

Alex: Isn't death an irreversible state?

Eric: An irreversible cessation of life?

Alex: Irreversible cessation of life, by definition ... So some of those people aren't dead, are they? Okay, have you been to codes where people have survived? So they didn't die. Are they ...

Eric: Are we saying, like, we're God. Like the light's shining behind us, and we're coming in there, and we're going to, you know, reverse death. The thing that only super-beings and gods could do.

Kai: I have one quick anecdote. Was just a colleague, his first few months out of residency was in a new hospital. Did a code that was, I think, 45 minutes long or an hour. Pronounced ... The guy was I think having agonal respirations, and so he called the hospitalist to just get him a critical care suite. And the hospitalist came over and the guy opened his eyes and turned and looked at him. And the hospitalist’s note was very funny and snarky, was like, "To my great surprise, patient proceeded to interact in a normal manner." And I think it was just so shocking, because that has probably never happened to any of us, where you've tried and tried and tried and tried and someone is not surviving, and they're kind of ... So it speaks to your point that for some of those people, the question is: if ... for those for whom without major interventions it would become a permanent, irreversible state, can you refer to ... I guess "if you were to die" seems like a more ... I don't know.

Alex: I worry it gives the healthcare professionals and the healthcare system a power that we just don't have. To insinuate that we can bring people back from the death, from their death, just worries me.

Laura: But we did ... To be clear, though, just to push back, we did change the definition of death for brain death in order to allow organ donation. And so from the point of view that, you know, there was fluidity there, like, granted, you know, Jahi McMath and her family have pushed back on that definition. But I think that it opens the door for that, to say, like, as physicians or healthcare providers we can't define the moment of death. So I'm gonna challenge you on that just a little bit.

Alex: I feel like it's context-specific. So Jessi and I cared for a patient the other day who is dependent on dinotropes, I mean inotropes. His blood pressure supporting medications, right? And-

Jessi: Flesh dinosaur vitamins.

Alex: Yes! When that patient died ... When that patient's heart stops and they stop breathing, they are gonna be dead. Right? They're not coming back. 'Cause you bring them back, you return to a state of no blood pressure. Right? When that inotrope turns off, which is the way we'd sort of planned for the end of that person's life, they're gonna be dead. And we were talking about should we, you know, deactivate DNR and deactivating the ICD. In that case, they're dead. But in ... And I didn't have an issue with using it in that particular context. And maybe patients who have advanced cancer spread throughout their body ... When they die, they're generally dead.

Eric: But mostly dead?

Alex: That sounds like "The Princess Bride"! That's the problem.

Jessica: I mean, I imagine that all of you have had the experience of coding people on monitors, and I feel like how much of the time when you're running a code do you get to a place of no blood pressure. Even through the code. I mean, I think that ... To me, that feels like the default. Like more often what happens, in fact. That you're resuscitating a person to a condition of no blood pressure. I don't know. That sounds like the norm.

Laura: I've actually heard patients who survived codes say, "I died on my last hospitalization and they brought me back." And they felt comfortable saying it and talking about it in that way, and I think that that reflected how the conversation ... Like, it probably reflected how somebody had a subsequent code-status conversation with them, but it felt ... It rolled off their tongue.

Eric: My heart starts beating really fast when I hear them. Oh my God, this is gonna be an incredibly hard conversation ... If I think this person's not doing well, to think that, oh, the last provider said that they died and they brought them back. It would-

Laura: You're nervous.

Eric: I'm nervous.

Alex: And yet in the anesthesia, I think we say this. Like they're essentially dead, and we're keeping them alive. And I'm not sure that the lay public, going back to some earlier comments about "died", has the same idea of death that we have. You know, death is an irreversible ... That's a medical definition. Right? An ... irreversible state. So maybe there's room for that in our language. So-

Eric: So there's a whole lot of things sounds like that I shouldn't be doing. Or shouldn't be saying. "Need". We can argue about whether or not we should say "die". We can argue in the context of, "You are dead, would you like us to bring you back through our magical powers?" Or ... like what should we be saying? How should we be doing this?

Laura: Can I add another thing to the list of what not to say? I don't really like it when people say, "Would you like us to x-y-z?" The way that I would actually say it would be to say, "Our default if someone's heart stops in the hospital is to provide chest compressions and electric shocks. Unless someone tells us that they don't want those things to happen ... Have you ever had a conversation like that?" So that you kind of get to that point of, "Have you had that full-value conversation with somebody that you know and been able to have it in the context of, you know, an exploration of your understanding of illness?" If that's the conversation I'm having in the emergency room, rather than saying, "Hey, we've got this thing that may potentially be beneficial. We don't really know each other, I don't know much about you and that you understand or any of those things. Do you want us to try this thing?" Like not many people are gonna say no to that.

Eric: It also seems like no matter what we do in two sentences, in 20 sentences, we are not going to have somebody fully understand the nature of this intervention and all the potential outcomes, and how it reflects on the context of their illness and whether or not it will achieve their goals. So in some ways, it seems to me like the biggest question is, "Have you thought about this?" And if not, you're probably gonna have to spend more time with that individual than just a couple sentences.

Laura: And I think that was part of the hope and dream of advance directives is that that full conversation would happen at one point with somebody who knows you are with your family, and then it would become durable, and then kind of be brought forward into other discussions. Whether or not that's actually kind of what happens is a different story.

Alex: I don't think there's any one cookie-cutter approach, or we can say "use these words" in a situation. And that it's context-specific. And that in some situations, some language will seem appropriate. In others it won't. So that it's very individual. But I think, you know, putting thought into the language we use in each situation is kind of the point of this broadcast. And that a lot of the language that we use routinely is fraught and problematic. And that the best conversations do start with an understanding of patients' goals and values, hopes, fears. And then work backwards towards specific interventions with a recommendation that comes from the physician or the nurse practitioner or other clinician about the treatments that align with those goals.

Kai Romero: Feels more like you're ... A conversation I had with a clinic patient last week, it felt a lot more like being a translator of, like, medicalese to her. She told me what she cared about, she told me what she thought would be important to her. One of the things she said was that she would never want to be dependent on other people, and she was like, "I don't even want to move in with my kids. If that's on the table, I don't ... like ... Let me go."

But that felt to me like a more authentic experience of discussing code status, when I was ... My main role was to translate these interventions for how they could meet her hopes for her care.

Jessi: In some ways that makes code status a lot more like every other thing we talk about in medicine. Right? For most things, we ask people what they're interested in, what sorts of, you know, different types of procedure options or medications, side effects they're worried about, and then give them a recommendation based on our understanding of medicalese.

Kai: Do you think that's what we do? I mean, I ... So I-

Jessi: Well, what we could do, what we ... Yeah. What we do in the best scenarios of our medical interactions with patients.

Kai: Yeah. I've found that that is not ... So, for example, in the cancer center where we see our palliative care patients, very rarely do they walk into onc- clinic and say, "Look, these are my priorities. Can you find a treatment that matches my goals?" They're usually offered a list of five chemotherapies with varying degrees of kind of survival. And with a discussion of the side effects, but with very little kind of comprehensive sense of how to choose the treatment that best matches their values. And so I think that in fact if they were offered chemotherapy that way, it would be amazing, and it would give us a lot less work to do as palliative care doctors.

Laura: I agree that that's the aspiration for shared decision making but not necessarily the reality.

Eric: So I learned a lot today, including bacon can be a default for me. Thank you, Dr. Petrillo. Can you maybe end us with another song?

Laura: Alex and Laura sing “Stayin’ Alive” by The Bee Gees.

Announcer: The GeriPal podcast is supported by bacon.


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

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 »