Tuesday, February 28, 2017

How Low Should We Go with Blood Pressure in Older Adults? A Podcast with Mark Supiano

In this GeriPal Podcast we talk with Dr. Mark A. Supiano about a blood pressure management in older adults in the light of new evidence from the Systolic Blood Pressure Intervention Trial (SPRINT).

In particular, we talk about a recent paper he co-author with Jeff Williamson in the Journal of the American Geriatrics Society (JAGS) titled "Applying the Systolic Blood Pressure Intervention Trial Results to Older Adults."  We discuss issues around the generalizability of the SPRINT trial, whether it applies to a subset of frail older adults, and whether the way we measure blood pressure in a typical office visit influences how we should think about the question "how low should we go?"

GeriPal Podcasts can be found on:

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Monday, February 27, 2017

Encouraging ACP to support the Older Americans Act

by: Joanne Lynn, MD (@drjoannelynn)

Last year when the Older Americans Act came up for reauthorization, no medical or nursing professional groups provided visable support.  Outrageous.  This is how our vulnerable patients get Meals on Wheels, housing adaptations, transportation, and so on.  Funding has been stagnant for nearly two decades.

If you are a member of American College of Physicians (ACP), please write immediately in support of the Resolution 3-S17 which is reproduced below – comments are due by March 1 – so don’t delay.

Send your supportive comment to astacp@hotmail.com.

If you are not in ACP – consider whether your professional organizations might support the OAA when it comes up next year.  ACP required this process that ends up authorizing their advocacy group to take action – so it takes a year or so to get them aligned.  See what other groups will need to be ready.

If we are not there for our patients in need, who will be?  Most cities now have 6 month waiting lists for home delivered meals.  We do the mop-up for shortcomings like this when elderly and ill folks end up in the ER – but the persons in need suffer and we have to run up the costs.  Let’s break the cycle and feed and support people who cannot fend for themselves.  Support the Resolution!


Here’s the Resolution:

Resolution 3-S17. Supporting the Older Americans Act

(Sponsor: District of Columbia Chapter)

WHEREAS, the ACP has a long history of being supportive of efforts to improve the health care for the elderly (who are high-risk for the need for social services) as well as in general for other persons who are at-risk for the need for social services; and

WHEREAS, an ACP Mission is to advocate responsible positions on individual health and on public policy relating to health care for the benefit of the public and our patients; and

WHEREAS, the Older Americans Act (OAA) [1] [2] provides funding for social services to at-risk elderly persons and is up for renewal in 2018; and

WHEREAS, such funding has not increased sufficiently to provide adequate assistance to individuals requiring significant need for social services (e.g, funding for the Older Americans Act has been essentially flat over the past decade though the population 65 and older has increased by over 25% in number in this period of time[3]; and

WHEREAS, individuals who cannot adequately care for themselves without supportive services suffer unnecessarily, spend substantial resources they often cannot afford, and have to rely upon medical care, which is often discontinuous and expensive, occurring in settings such as hospitals and nursing homes; therefore be it

RESOLVED, that the Board of Regents supports the Older Americans Act as official policy; and be it further

RESOLVED, that the Board of Regents will collaborate with other health care professional groups to lobby for the extension of the OAA beyond its current 2018 expiration date, lobby for increased funding for the OAA, and encourage the development of innovative, cost-effective models of care which combine medical and social services in general.

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Monday, February 20, 2017

Jessica Zitter on Palliative Care in the ICU

In this GeriPal Podcast  we talk with Dr. Jessica Zitter, a pulmonary critical care and palliative medicine physician (click here for the podcast).

Jessica Zitter is the author of Extreme Measures: Finding a Better Path to the End of Life (publication date 2/21/17) and is featured in the short documentary Extremis, available on Netflix and nominated for an Oscar.

We talk with Jessica about her experience transitioning from being an ICU doctor to an ICU/Palliative doctor, how she is treated differently when she sees patients as an ICU attending vs a palliative care attending, the Big 3 (CPR, mechanical ventilation, and feeding tubes), and most importantly WHO she is wearing to the Oscars!

Jessica Zitter will be speaking and showing the film Extremis at the HPNA/AAHPM meeting this Thursday 1:30-2:30, and will be signing copies of her book Thursday at 5:30pm in the Exhibit Hall.

Major props to Jessica for being the first GeriPal podcast guest to sing along!  Musical hint: recorded on Aloha Shirt Friday...with an Ukulele...Somewhere...

by: Alex Smith, @AlexSmithMD

GeriPal Podcasts can be found on:

Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: And we have a guest with us today, Jessica Zitter. Jessica is a Pulmonary Critical care doctor, a Palliative Medicine doctor, a feature in a recent Academy Award nominated film, Extremis, that you can find on Netflix, and also now an author of a new book called Extreme Measures. Welcome Jessica.

Jessica: Thank you so much for having me.

Alex: So I thought we'd start off, given the seriousness of the topic of Pulmonary Critical Care, and the weighty tone of the movie with something sunny, because it's Aloha Friday! I forgot my Hawaiian shirt, but usually on Friday we all wear Aloha shirts, so in honor of that maybe a little Somewhere Over the Rainbow. Jessica are you going to join me a little here?

Jessica: A little bit.

Alex: All right. Got the ukulele too ...

Alex and Jessica sing “Somewhere Over the Rainbow” by  Israel Kamakawiwoʻole.

Nice, I think that's the first time we've had a guest join for singing on the GeriPal Podcast.

Eric: I believe so.

Jessica: That's gorgeous, thank you. Your voice is really much more beautiful than mine, thank you.

Alex: No, no, no. That was beautiful. Welcome to GeriPal Podcast. It's an honor to have you with us today. I really enjoyed reading your book and seeing the movie. Such deep material, there's so much we could talk about today. I thought it would be interesting to start off by talking about what motivated you to write the book, in particular. Why a book? How did that happen?

Jessica: It didn't happen ... It didn't start out intentionally as a book. It started out as a series of personal journal articles. Journal writing that I was writing in my early days as an ICU doctor, and even my residency in medical school when I was, really looking back, suffering from some moral distress. It was a way of processing what I was seeing and sharing it with my family and friends. And as I found the Palliative Car movement, it became a much more hopeful series of essays and eventually that turned into a book proposal.

Alex: I was struck in this book by how much there's a sense that as you learned and developed, and became interested, and trained, and worked in Palliative medicine, that you had to unlearn so much of what you have learned in Pulmonary Critical Care. Not just in terms of the technical stuff, but in terms of the culture of critical care. I wonder if you could comment on that a little bit.

Jessica: I'm still unlearning and I'm still learning, and I expect that to be the case forever, I hope. We go in and especially in moments of, in environments, like the ICU where there's so much distress and so much extremis and physiologic distress and suffering. It's really comforting to fall back on protocols. It's something that I just did automatically and I didn't really know another way. It was when I learned from a nurse, Pat Murphy, who I write about in the book, who taught me really how to be the doctor that I aspired to be now.

I learned how to do it a different way and come out of the protocols and take pauses, that I started to feel some relief. But it was hard. It's still hard.

Alex: Yeah, Pulmonary Critical Care and Palliative medicine are one of those, just almost ... I don't want to say combustible, but there's something about the cultures of the two that are seemingly in some ways at odds. So, it's just remarkable to read your story as you've gone through the journey of being well trained and accomplished in both.

Eric: What I thought was fascinating is that you mentioned that you're treated differently as a Pulminologist and Critical Care doctor when you do consults. Where your word is, you said, like "God" versus when you're a Palliative Care doctor, sounds like, your word isn't always like "God."

Jessica: Actually, before I answer that. I'm curious to hear what you thought about when you read that as Geriatricians and Palliative Care physicians. What's your response to that?

Eric: Well, my response is that, I feel like our word is never like "God", it's always a negotiation. I never thought about the differences in consult culture, and how people respond differently to different consultants before I read that.

Alex: Yeah, Pulmonary Critical Care is so hierarchical. The structure of ... Right? As you write about it in the book, and Palliative medicine is so interdisciplinary. Each team member is valued in its own way.

Jessica: Yeah, it's really fascinating to me. I actually wrote a piece a while ago called “Collegial Burnout.” It was about the burnout that I think is unique to Palliative Care physicians, maybe other types of physicians too, but certainly something that I had come upon later in my career in trying to navigate my way through as a Palliative Care consultant. It's not the kind of burnout that we talk about with "Oh, you know, so many patients are dying and there's so much suffering." It’s not that burnout, which of course is a real burnout as well. This is a different kind of burnout, and it's the burnout of feeling like you're constantly walking on egg shells.

And like you really don't want to ... You want to adhere to this consultation etiquette. There's consultation etiquette for every consultant, but when you're a Palliative Care physician with this relatively new sub–specialty of medicine and also perceived by many as, touchy–feely, you have a sort of a different ... It's a different dance, and it's very complex I find.

So, I didn't answer your question, but I do notice a big difference. I do feel that when I'm coming in, say, making Pulmonary recommendations or I'm coming in consulting as an ICU doctor on a surgical patient in the ICU, people are like "What, tell me exactly what to do. I'll do this, this, this, this, and this." When you come in as a Palliative Care consultant, people are telling you, "Don't talk to my patient about this. You can talk about this, don't reframe it this way." It's changing, certainly. I really feel a change, but it's been a very interesting discrepancy for me.

Eric: So this book is almost a collection of essays and one of the things that I ... One of my biggest questions is, sometimes I can't even remember what I did yesterday. Do you journal? How do you remember all ... Because it's filled with so much detail. How do you remember so much that you can create these wonderful essays, and a whole book about them?

Jessica: I've been writing for years. I write, I would love to show you my computer. It's basically filled with scraps. A lot of times I'll write a paragraph, I'll come home and say "Oh my gosh, I saw this, this, and this person". Interesting stories, and I'll write a paragraph of them, about each of them. It'll take me 15 minutes, and I'll put their medical record number in so I can back and look up details of the case later. In fact as I was writing the book, I definitely had to do that, or even sometimes call my friends in New Jersey, "Remember that case?" And usually they didn't, but it's tricky. But I have to sort of do some documentation along the way. I've been doing that for years.

Eric: Does that also help with mindfulness, self–care and burnout?

Jessica: I'm terrible at that. This is my big downfall, as a Palliative Care physician is the self–care. I really need to do better at that. I guess in a way it helps with, I wouldn't say mindfulness, but I think with processing and reflection. I guess that's a form of mindfulness. I do feel very revved up, and maybe that's partly my personality, but I feel this sort of burning passion to talk about these things, and when you get me started, it's hard for me to not spread well, “and then this happened, and then that happened." Because I feel that we have, honestly, a public health crisis that we need to manage. I just feel like I want to get the word out to everybody so, I'm not very good about settling down and just saying "I did this and now I'm gonna move it aside and go hang out with my kid." I'm not doing that as well as I would like to.

Eric: What do you think the crisis is?

Jessica: I think people are dying badly, and I feel like I have a front row seat to that in the Intensive Care Unit, which as you know is sort of the place that people get funneled into. If we keep going along, what I call this end of life conveyor belt. I just feel ... And, as we all know, when people are informed, they choose differently. I feel like I'm responsible for carrying out treatment plans that I'm not even sure people want. Because, as you know, by the time they come to us, it's really too late to assess preferences and goals. And we're working with surrogates who are well-intentioned often, but not necessarily able to do really what the patient would want. We just never know, so it's a very tough place to be.

Eric: So, that reminds me of a quote in some of the challenges that we face doing this in the hospital. Is it okay if I read the quote?

Jessica: Please. Yeah.

Eric: "These decisions are difficult in any case, but with secrecy, physical distress, and unclear set of personal preferences, there is no real way to know what to do in the very few moments that are left. All options available, to me, felt brutal. Trying to talk to a dying man in extremis about his mortality. Trying not to talk to a dying man in extremis about his mortality. What would you do?" I think that's often the challenge, is how much distress, and I think you talked about this essay, how much distress do we cause people by having these conversations? And how much distress do we cause by not having these conversations? Especially when there's so much urgency to have them.

Jessica: It's the key to it all, and it's why no matter how good you are, and no matter how much of a support system you have. Ultimately this is very stressful work, because you're dealing with human beings. That case was a man who was very, very in-stage with PCP Pneumonia, who had clearly avoided all healthcare contacts. I really suspected that probably he didn't want us to intubate him. I knew it wasn't really gonna help him, but that's our default path, right?

Eric: Yeah.

Jessica: Respiratory failure, ventilator. And so, I just ... He was really ... We had drawn up the medications to intubate him, and he was so terrified. He was looking at us like, "What are you gonna do? Help me, help me." And I was going to go in, and then I thought, "Oh my gosh, I don't know. Let's just sedate him, intubate him." And then my medical student with whom I had been processing this, said to me "Dr. Zitter, you've gotta go in. You gotta tell him." So I did. I went in and I looked at him, and I said this, "I don't think this is gonna help, but do you want us ..." And he looked at me like a deer in the headlights, and he didn't answer. And I didn't know what to do and he looked more and more anxious, and I said "Okay we're gonna intubate him." We intubated him and he died within a few hours.

My resident said to me the next day, when I wanted to process the case on rounds, and it was a very distressing case, as you can imagine. This one resident said to me as we were going around the group, "Well, Dr. Zimmer. No offense." And those words always strike fear. "No offense, but I'm really kind of uncomfortable with the fact that the last words this man heard were, you're gonna die." I think about that to this day. Did I ... What would you have done? What would you have done? I don't know. I did what I thought was the right thing in those very moments.

Eric: Yes, so these palliate stories are so powerful. My favorite was the fear of being wrong. I'll just read a little bit of this here, "But in my opinion one of the most powerful determinates of physician behavior, is the fear of being wrong. There are a small number of cases that will haunt my practice forever. Their memories stifling my desire to speak the truth as I see it. These were patients whose prognoses I had thought extremely dire, but who against all odds had rallied and survived. Or at least didn't do as badly as I thought they would."

That strikes me as ... rings true to me having just come off service and had some similar experiences there. Where you sort of put yourself out there, and you ... When you are making prognoses, we are putting, you know ... even though we acknowledge the uncertainty, we are putting our nickel down, and saying this is what I'm worried is gonna happen here. And sometimes we're really wrong. In this particular case, this was about a patient named George, as you call him in the book. Who had a massive brain bleed, and you were really worried about what would happen if they tried to take him to surgery. Then he ended up making it through remarkably, right? You want to say more?

Jessica: I really was worried about what would happen if they took him to surgery, but I was also worried, I'm gonna be honest, about if he survived.

Eric: Yeah, what would he be like?

Jessica: I really worried that this man would be very, very debilitated and really permanently confined to a breathing machine in a ventilator facility. I felt that in some ways, I mean again, it's not for me to decide ultimately. But I wanted the wife, I wanted her to have as much information as I had, which is there is a risk that he'll die, obviously on the table, but we already knew there was a risk he was gonna die. But there's a risk that he'll survive, and this is what it will look like. And, he did survive, and it didn't look the way he would've wanted it to, I don't think. Now, would he have said "Don't keep me alive." I don't know. "Don't take me to surgery." I don't know. But she might have made a different decision had she known what it was really gonna look like ultimately, which I tried to tell her.

Eric: So, in the book, you describe the Big Three and how people treat the Big Three differently. But can you describe for our audience what the Big three is?

Jessica: It's the Big Three, it might be the Big Four. They're procedures that the public knows about. That have been sort of immortalized on T.V. Codes, breathing machines, dialysis. These are things people ... not necessarily pressers, right? But certainly codes, dialysis, breathing machines, feeding tubes. So, I say the Big Three, but for each person it's gonna be slightly different ones. The concept is, these are things that people know about and have been revered on television shows or held up as magic pills, and magic solutions.

And so, people think they're going to help. The point that I make in the book is that there are these things that, even if we as the healthcare team, do not feel that they're gonna be of significant benefit, they're certainly not gonna reverse the underlying illness. If a family insists on getting them, we have no choice. If a family insists that they be used, even if we don't think it's in the patient's interest, even if we have some evidence that maybe the patient wouldn't want it, we really are obligated to give it to them. Because we've just built our health system up that way. A neurosurgeon doesn't have to do an operation, they can come in and say "Sorry, not a candidate for surgery." The surgeons can come in and say, "Sorry, ischemic bowel, but we're not gonna take this person to surgery."

But the ICU physician really can't say "Oh, you know, I'm not gonna intubate this patient. It's not indicated, it's not gonna help this person." If the family is saying "intubate," we have to intubate.

Eric: To you think we're obligated? Or do we feel obligated? For instance, for CPR in the VA system, we can't change people's code status from full to D8R. However it's still in the physician's judgment when to call a code, whether it be at 15 minutes 5, or 1 second. And I wonder how much of it is a ... Because I don't know of any legal rulings that say a physician has to do a particular intervention. Rather that it's our risk aversion that makes us feel obligated. Your thoughts on that?

Jessica: Absolutely, and you know, how many times have I picked up the phone and called risk management and said, "Well, what do I need to do here." The reality is, if you actually do call risk management, which I do a lot by the way, they often really just tell you just to go ahead and do it. Those kinds of situations as we all know, usually arise when there's some conflict, and there's some conflict between healthcare team, maybe some family dysfunction. There's conflict, and you've sort of lost the communication line. And it's not about communication anymore. It's not about logic, it's not about truly patient–centered care and assessing goals, it's about something else, but it's being manifested in this way. And again, if they are insisting on it, I don't personally see a real option. Look at the Jahi McMath case, in Oakland Children's hospital. That was a case of brain death, and the fact that that went as far as it did. And she is now ... I don't know.

Eric: In New Jersey.

Jessica: In New Jersey, I mean it's mind boggling for us in Palliative Care and Critical Care physicians who think about brain death. There was not really anything they really could do. They were really stuck, those physicians. I think it's a powerful ... It's a powerful commentary on our societal relationship with technology, that we just are so enamored with technology and we believe in it so much, or this technological imperative. If it's there is got to be good. That we can't even, with all due respect to logic, we can't take it off the table ... Certain parts of it off the table, because they've been so celebrated and they're so expected as a right.

Eric: Maybe we can shift gears and talk about your movie, Extremis, which is up for an Academy Award.

Alex: And you're going to the awards.

Eric: So, the question that I keep on being asked by people who hear you're gonna be on this podcast, is what are you gonna wear?

Jessica: I don't know, and I'm going shopping today for it. It's hilarious, because let me tell you, I was joking before, but I'm currently wearing .. can I describe for the audience?

Alex: Yes.

Eric: You can describe to our audience.

Jessica: Okay, this is a typical ... This is a kind of slightly dressed up for me. I'm wearing a kind of a nice pair of jeans. I'm wearing a shirt that I got at a really nice place, so it was probably like, $80. When I was cleaning off my stethoscope with that bleach, I kind of draped it over my shirt. So, I've got a bleach stain coming down the center. This is nice for me, so I don't really know... My friend emailed me yesterday and said, "Who are you gonna wear?" And I said, "Jinx" who's my dog. And she said "That's disturbing." And I said "No, it's cuddly."

Eric: So tell us where did the idea of the movie come up?

Jessica: When I ... Did you hear about the movie, The Waiting Room? If you didn't you must see it.

Alex: No I don't ever think I had.

Jessica: It came out in, I believe, 2012. Director Pete Nicks, whose wife works with me in the ICU at Highland. She's a speech therapist and she's terrific. And Pete came in and did this film that was mind blowing, about really access to healthcare, county hospital, emergency room. It's sort of 24 hours in the day of the emergency room. We saw it at the Grand Lake Theater, the whole was there, and I saw it and I was blown away. An you must see the movie, just gorgeous and compelling, and just the visuals and ... And I was at this point writing a lot. Writing for the New York Times, and really, people were responding to it. And I said to myself, and I went up to Pete at the end of the showing and I said, "You've got to come in and do a film in the ICU about decision making, it's a really important topic." And he said, "oh uhh, I don't have time. I'm doing this film on the police force in Oakland." Which apparently just came out, and it's supposed to be wonderful.

For the next year, I texted Pete every time I had a really interesting ... I'd text him probably ten times over the next year, "Pete, it would have been great if you'd been here, listen to this family conference. It was so interesting." Finally he got tired of me texting him, and he said "Look, I got this friend whose interested in a new project. Why don't you meet him?" So, we went out to this café, this kind of really hip café in Oakland. I'm with these two directors, very cool guys, and I was not very cool. Anyway, and I was trying to convince this guy, Dan Krauss, why this was such an important topic. And Dan was sort of interested, he's like "I don't know, kind of sounds ... Like it might be kind of sad, or might be ... Why would people want to watch this?" And I was saying this was really compelling, it's actually not sad, it's really inspiring, and we can have wonderful outcomes and...

So, he said "You know, let me think about it." Then, I guess he emailed me a couple days later and said "I'll come ..." I said "Come in round with me." So he came and rounded with me and we had a really tough case right off the bat when he was there. Young guy with kids, and Dan has young kids, and the guy was dying and Dan's like "Oh my God, this is just so awful and difficult." And he said, "I don't know about this." I didn't hear from him for about a month. And then he emailed me and said "You know what. I think I want to come back. I want to conquer my demons on this. I can see it's an important topic, and I kind of want to come back." I said "Great, come on." I was like, "You sure? But okay."

So he came, and he brought his camera with him, and then went on to just start filming. It was incredibly stressful for me. It was one of the most stressful things. I think if I had to say, what was the most stressful thing in my career, I'd say that filming. Because it went on for about three months and he ... People were really weary, as you can imagine. It's an ICU, it's not just an emergency room, it's like an ICU! My colleagues were like "Well, I don't know." I had thought we were all gonna be in it.

People were really reticent and uncomfortable, and felt ... And every time I asked a patient or family if they would be willing to have Dan come in and film them, I felt like I was in some ways, abusing my right. And so I was very ... I felt really stressed. Because my goal is to protect my patients, and yet I felt this was such an important thing. And I would say to them ... And Dan was the same way, he's very, very respectful of people. We both would be like ... I'd say "Please. Most people wouldn't want to be in a film like this, so do not ... If you're interested, think about it and we'll come back." Very few people agreed to be in it. Many of the staff didn't want to be in it. It was very hard, I felt like I was coming in with this film crew ... Anyway, Dan just obviously a genius, made this gorgeous film.

Eric: Yeah, it's amazing.

Jessica: He put it together and I'm just so appreciative. I think he really did a huge service to humanity by putting this film out there in a short documentary format, so people can access it and see it.

Alex: It's on Netflix, we should say. So, all of you out there, it's about 24 minutes long. Short, remarkable film. Captures so much of the crush, the life and death decisions, the extreme ... call it extremis, which I assume ... Is that a word?

Jessica: It's a word we use in the ICU all the time, and I say it a lot.

Alex: He's an extremis?

Jessica: He's an extremis, yeah. I looked up the word, by the way. It means profound physiologic distress before death. Which is what we deal with in the ICU.

Eric: The other important part is that you'll be at the American Academy of Hospice Pal- Medicine (AHPM) annual meeting. You will both be having a workshop and a book signing, is that right?

Jessica: Yes, I-

Alex: Can you tell us a little about that?

Jessica: I hope you'll all come. Yes, and to note it's incorrectly labeled in the program. It says that I'm on Saturday, but I am on Thursday going to be presenting a breakout session, Thursday at 1:30, on Extremis. We'll show the movie and then we will, have not a huge amount of time, but to talk about three points that I want to bring up, based on examples from the movie, about communication barriers and strategies for us overcoming them in the Intensive Care Unit. Hopefully we'll give some people some time to process that, and also then hopefully people will join as at our book signing that evening at the exhibit hall at five–thirty.

Eric: Wonderful.

Alex: It's great and then after that they're gonna come to the GeriPal PaliMed Party, everybody at AHPM, who's listening to this podcast will be there, Jessica included.

Jessica: Yes.

Eric: To learn more about that, you can just go to the GeriPal website. We'll have links to Jessica's book, to the AHPM correct timeslot, and to Extremis, the movie, and how to get on it on Netflix.

Alex: Should we go out with a little music?

Eric: That sounds like a lovely idea.

Alex and Jessica sing “Over the Rainbow” by Israel Kamakawiwoʻole.

Transcript Edited by Sean Lang-Brown
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Wednesday, February 15, 2017

Ain't No Party Like a GeriPal / Pallimed #HPMParty at #HPM17

Come one, come all to the 11th annual GeriPal / Pallimed party during the Annual Assembly of AAHPM and HPNA, and right after SWHPN's conference too!

In keeping with tradition, we will host it on the Thursday of the Assembly (Feb 23rd).  We will start at Lustre at around 8 PM and move on from there to Hanny's at 10pm (and then who knows what).  Like always though, these are rough estimates of time, so if you want to know the details, follow the hashtag #HPMparty on Twitter.

Also, feel free to invite and bring anyone, as this is no exclusive crowd.

Ways to follow: 

by: Eric Widera (@ewidera)

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Wednesday, February 1, 2017

Nate Goldstein - The Role of Palliative Care in Heart Failure

On today's podcast we interview Nathan Goldstein (@drnategoldstein), Chief of the Division of Palliative Care for Mount Sinai Beth Israel. We discuss his experiences and research focused on improving communication and the delivery of palliative care to patients with advanced heart failure, including for those folks with AICD's and LVADs (and other interesting acronyms).

GeriPal Podcasts can be found on:

Transcript of the podcast:

Alex: Welcome to the GeriPal Podcast, I'm Alex Smith.

Ken: I'm Ken Covinsky.

Alex: And we have a special guest with us today, Ken. We have Nate Goldstein all the way from the left coast. Who's Nate Goldstein?

Ken: Oh my gosh, I have been a long-time admirer of Nate. Truly on of the giants in the fields of palliative medicine. So Nate is the one who has really founded the field of palliative medicine within heart failure research.

Alex: I can't wait to meet him. He sounds really great. That's amazing! And there is Nate.

Nate: It's an honor to be here, guys. I'm having fun already.

Alex: So Nate, you have to choose a song to start us off here.

Nate: So as I said to you this morning, Alex, I've been listening to podcasts to try and really do some research here, but it hit me this morning, that this is probably the first podcast after the inauguration. And so I thought, and this is not making a statement about your political sympathies, but I wanted you to play whatever song of resistance you know and that you wanted to play.

Alex: That's good. Okay a resistance song. So, let's see. The first song that came to mind is "Redemption Song," by Bob Marley.

Ken: Oh that's wonderful.

Alex: Is that good?

Nate: That's perfect, yeah.

Alex: I'm trying to remember what key it's in. Oh I remember.

Alex plays “Redemption Song” by Bob Marley:
"Oh pirates yes they rob I, sold I to the merchant ships. Minutes after they took I, from the bottomless pit. But my hand was made strong by the hand of the almighty. We forward in this generation triumphantly. Won't you help to sing these songs of freedom? Cause all I ever had, redemption songs, these songs of freedom."

So, Nate, welcome to San Francisco, we're delighted to have you here. And we want to talk with you about palliative care for heart failure today. And to start us off I thought we... I just wanted to ask if, were there any particular clinical experiences that moved you to conduct research in this area and be the national leader?

Nate: Yeah, there was a very clear clinical experience. I was a resident, a third-year resident on my rotation in the ED and there was a patient with advanced lung cancer who was at home on home hospice who had an ICD, and he came in to the emergency room getting repeated shocks from his ICD.

And he was lying there in the bed totally comfortable and we had him on the monitor and he would sort of... I mean he was dying, so, he would sort of go into arrhythmia, and he would go into V-tach and to defib and his ICD did not know that he was dying of lung cancer so it just kept shocking him and the ICD was doing exactly what it was supposed to do. It was monitoring his rhythm and we were watching on the strip and every time it was supposed to, it shocked him and we eventually turned it off in the emergency department, but he ended up dying in our not-very-private trauma bay, as opposed to in his bed at home, which he and his family had wanted.

And that was sort of like, this feels like a problem that needs to be fixed, and that's how it all started.

Ken: So Nate, what is this ICD thing?

Nate: So an ICD in an implantable cardioverter Defibrillator and the idea is that it monitors the heart rhythm and can send very small electrical shocks to change the rhythm to one that is compatible with life.

Alex: And what's it like going into a new field where palliative care hasn't been traditionally. Like, palliative care really started more with the hospice movement with cancer and it's taken a while to create a foothold in palliative care and heart disease and heart failure in particular and you were one of the first people in. What was that like?

Nate: I love that you think there was a plan. I mean it sort of, it was very much like, this is a thing in front of me, I'm gonna work on the thing in front of me, and then you realize what the next thing is, and what the next thing is, and what the next thing is and suddenly other people are jumping on your ship, and you're totally excited, and now there's all of these people doing amazing work in this field. And I think the field has finally really realized it and begun to welcome us more and more into it and that's been really exciting to see.

Alex: And just sort of trace your own arc here, you started out working primarily on the discussions around deactivating ICDs as the clinical stories.

Nate: That's right, so we started with sort of a retrospective study, and then we did some qualitative work with patients and clinicians and then we did a lot of work in hospice, and we've just finished a big five-year RO1... Alex got really excited, that look on his face was, but we haven't actually analyzed the data yet because it's just now finished coming in. So, sorry.

Alex: I thought we were going to have a GeriPal, new breaking news story!

Nate: And we're trying to figure out kind of what's next, and so it's really exciting. It's so interesting in our fields, this combination of forethought, serendipity, and blind luck. I mean I imagine that you both have those stories, in particular you, Ken. Sort of how you fell into this work and that sort of thing. And the more people I talk to it turns out there's...life is really so much about what happens to be right in front of you and whether or not you chose to take that moment.

Ken: The grand plan is not as grand as we think it is often. Nate can you tell us a little bit about the trial that you're finishing?

Nate: Sure, so, it's a six-center study, we call it "The Wisdom Trial," because you can't have a trial in cardiology without a super-fancy name. And we train docs in the beginning to talk to patients about ICD deactivation which is sort of the stated objective and of course the latent objective was to get them to talk more about advanced care planning. And you know hind-sight is 20-20 and I would never have done the trial the way I set out to do it five years ago, for lots of reasons.

But one of the things that's been most interesting about this trial, and about this field, is that cardiology moves so much faster than we do in geriatrics and palliative medicine. So we started with a set of entry criteria that we had to change because the field of cardiology was changing so quickly that in the very beginning we did not want to include patients who were candidates for ventricular assist devices. And of course that's now everyone. And so we had to completely change the entry criteria and some of the work that I've done looking at VADs we have changed those criteria as well as we've moved because the field moves so incredibly quickly. To me that's actually what's quite exciting about it is trying to sort of stay ahead of it and figure it out and figure out ways that we can integrate better, and integrate to kind of where it's moving, not just where it is now.

Ken: And what are the VADs?

Nate: So a ventricular assist device, the majority of them, are these small implanted devices that actually take blood out of an ailing left ventricle through an internal rotor, and basically dump the blood back in to the aorta. So, the body is still doing the work of oxygenating the blood. These internal devices basically just help circulate it. And there are connected through a drive-line that exits the skin, and is attached to little controller and battery pack so these patients literally plug themselves in at night and during the day they have this little wire that comes out of their skin that's attached to two battery packs that they wear around.

Ken: Wow, so it really is an artificial heart. It makes up for the heart that's not pumping.

Nate: So, the cardiologist would have a stroke, pun intended, if we called it an artificial heart, but us lay, non-cardiologists could call it that.

Alex: I remember at a meeting we were at this summer, where we were talking about different specialties of medicine and surgery, and palliative care, and the research frontiers there. You had a nice clinical pearl, that I thought would be important to share with many of our listeners, a lot of whom are clinical, that "the best palliative care..." what was it?

Nate: Oh right, the best palliate care for heart failure is treatment of the heart failure.

Alex: Yeah, can you say more about that?

Nate: So the best treatment for the short-of-breath patient who comes into the emergency room or is at home or is walking into your practice, is actually not morphine but Lasix, and this is the thing that's so interesting about heart failure is when you sit down with cardiologists, what they say is, unlike in other fields for example, in cancer, they say, "No, no, I know how to treat their shortness of breath. Like I actually know how to treat their lower-extremity edema. What I need help with is having them understand the trajectory of heart failure and where it's gonnna go, and sort of the hope for the best, plan for the worst."

And that is so, so different than cancer, where I think the oncologists sort of say, "No, no, I'll do the talking about goals, we're going to try X, Y, and Z, I want you to really work on symptoms." And I think that can be a frame shift for the generalist palliative care, the generalist geriatrician, clinician in the world because what you need for one disease entity is different that what you'd need for another. And this gets to the whole question of, not only specialty versus primary palliative care, but what is the role of the generalist geriatrician, of the generalist palliative care, clinician, in each of these diseases.

Alex: That is a great question, Nate. What is the role of the generalist palliative care, generalist geriatrician?

Nate: Dr. Smith, that was a hypothetical, not something I was planning on answering. So, one of the things we talk about, at least in our trial all the time, is the "hope for the best, plan for the worst." And particularly, in terms of heart failure, when we think about advanced technologies and particular assist devices and total artificial hearts and where we are in terms of heart transplant and how the number of VADs is unlimited, you just keep churning those out in the factory, but the number of hearts available for transplant has remained flat for the past couple of decades. So, how do you simultaneously sort of work with your patient to really hope for the bridge to transplant, to ultimately the transplant, while also be thinking about the sort of, the what ifs. The worst case scenario.

And I think the other piece that I've really learned in working with all of these cardiologists is in geriatrics and in palliative care we only see the cases that go terribly, terribly wrong. And that is an incredibly small minority of the cases. The vast majority of patients with VADs are walking around, on the street, passing you every day, you have no idea that they have a VAD. They're doing incredibly well. When you ask them, "How's life with a VAD?" We in palliative care and geriatrics expect the answer to be "Oh, it's awful, I'm stuck to this machine all the time, I can't stand it, I have all these problems," but the actual answer when you ask a patient is "Well you know, I can play with my grandkids now." "I can walk across the room." They couldn't do that a month ago, and I think because we aren't as well integrated as we could be, we never see them.

Ken: So Nate, speaking of the primary care issue, I think one issue in heart failure that frequently is tough for the primary care provider is this tension between the physiologic monitoring and the quality of life issue. So that the way a lot of heart failure treatment has gone is you really medicalize the patient a lot, that you get them to weigh themselves every day, you're constantly monitoring blood pressure, but I think on the one hand, you see the sense of that, on the other hand, I often feel that the goal of geriatrics is to make our patients' medical problems as little part of their life is possible. And that a lot of heart failure makes their heart failure as much a part of their life as possible.

On the other hand, maybe that makes sense if it prevents symptomatic exacerbation. So one of the things I struggle with, and I think a lot of providers struggle with, is what is the balance between all this very close monitoring and aggressive management of heart failure, and the needs of patients who often to maybe be de-medicalized and not have this be front and center in their lives all the time?

Nate: So I'll answer that actually two different ways, Ken. One is, inheriting what you said but I think is really important to explicitly state is that the mass majority of folks with heart failure are cared for by either the primary care doc or their primary geriatrician. So it's not the cardiologist and it is certainly not the advanced heart failure specialist that we're seeing in the coronary academic medical centers where we happen to work. I mean those are the sickest of the sick, the most complicated of the complicated, it's the ones where people tend to focus a lot of energy, but that's not where the vast majority of patients are.

The second part to that is, I think, and this is so much what we do in geriatrics and palliative medicine, is the patient will tell you when they're no longer quite so interested. And when you ask them, "so, where are you weights for the past two weeks?" And their answer is, "well, it was my grandson's graduation and it just sort of fell off the radar," there's your answer. We spend a lot of time, I mean we both work in, sort of, really urban centers where we say to the patient, "well you know, did you take your Lasix?" And said, "uh, no, it was more important that I went and bought groceries this week," or "I had to choose between these medicines and paying my rent."

So I think, where the rubber meets the road, is in sort of these day-to-day problems. I think this is not just a problem in geriatrics, I think it's a problem in all of medicine. Which is, we doctors sort of think that the patient's medical problem is the most important thing in their life, and they're gonna let you know that it's actually just a list of things they have to deal with every day.

Ken: Interesting. So really it gets down to listening to our patients.

Alex: So it seems like the pace of change, as you mentioned in cardiology, is just so incredibly rapid. And, you have an in because you work closely with these cardiologists so you have some sense of what's coming down the pipe or what may be changing before our very eyes. What is on the... what are we on the cusp of... what's changing now? What are the things that are going to push palliative care to have to think in new ways, new directions? Or may take cardiologists a step back and that they think this is the new miracle whatever...device, drug, treatment?

Nate: So, this is going to show my age, and I won't say anything about anybody else in the room, but, I remember days when you would walk into a patient's room who had a VAD and you could hear those old pulsatile pumps from outside the door. Neither one of you has to comment on whether or not you remember that, but I really remember that. The devices are incredibly small now, incredibly efficient. HeartMate 3 is the new VAD now that is coming out with this incredible data of no in-pump thromboses, incredibly small complication rates compared to where we were just a decade ago.

So the technology is getting better, it's getting smaller, it's getting much more, much easier to live with in terms of quality of life. One of my favorite stories is the VAD patient that's refusing to go out of the house the first few days because they're so scared about being away, what happens if the battery dies, etc. And then a month later they've left the house without the spare battery because they sort of forgot they even have the VAD. I mean it's really amazing to see that.

The TAVR in sort of all these non-invasive cardiac surgeries or less-invasive cardiac surgeries than what we're used to, I think is the new frontier, because you know, the cardiologists really look for survival and stroke. And the question that we come by and ask is like, "yeah but does it make life better?" And the new outcomes we're looking at is not survival, but days out of the hospital. Those are sort of the new outcomes we'll be looking at. Instead of things like quality of life, things that can still be easily counted, which is, you know, who doesn't end up in the nursing home, ends up going back home, instead of just these gross counts, and I think that's where clinical trials are going.

It's not, how many hospitalizations and ED visits but actually how many days were you out of the hospital? Out of the hospital at home, not out of the hospital in long-term care, but in the hospital at home.

Alex: Well that's a step in the right direction. What about measuring functional outcomes? Is that a big component of a lot of the heart failure studies? Because it wasn't early on. It was combined death and MI, or combined hospitalization and death.

Nate: Traditionally, it has not been an outcome the way we as geriatricians think about it traditionally. There was, does the six-minute walk improve? But not actually how is there function. And now some of the large registries in clinical trials are actually starting to put in those kinds of outcomes.

So it's still very, very new, like you can't go to a giant secondary database and do that research now, we're just starting to collect those kinds of data, but I think it will be soon.

Alex: Anything else you wanna...any shout-outs you wanna give?

Nate: I think the shout-outs that I wanna give, sort of in line with what we were talking about, and sort of in line with the question Ken asked earlier, is, who are the cardiologists out there in the world that have really embraced this? And those are the people that I want to give shout-outs to. The Lynne Warner Stevensons of the world, the cardiologists who are standing up in giant cardiology meetings and sort of saying, how do we incorporate palliative care, and even if it's not palliative care, how do we think about these outcomes that are really important to patients and their families and these kind of outcomes that matter, if you will. Those are the people that I think need more credit, because we can spend a lot of time on the outside sort of shouting, "you should, you should, you should," but it's the change-agents inside those fields that have really embraced geriatrics and palliative medicine that are helping integrate the kind of change that we're seeing more and more. That's the general shout-out I want to do.

Alex: That'll include Rita Redburg here.

Ken: That's right.

Alex: Great. Well we usually end with another verse. This one is, maybe, more appropriate for the Trump time period, we'll see. I'm gonna see if I can get this solo right.

Alex plays “Redemption Song” by Bob Marley:
"Emancipate yourself from mental slavery, none but yourselves can free our minds. Have no fear for atomic energy, cause none of them can stop the time. How long shall they kill our prophets while we stand aside and look. Some say it's just a part of it. You've got to fulfill the book. Won't you help to sing, these songs of freedom. Cause all I ever had, redemption songs, redemption songs, these songs of freedom."

Alex: So why'd you choose that song, Nate?

Nate: You know Alex, I just think it's really important that those of us in healthcare, who have a voice, make sure that we advocate for those in our society who don't have a voice, because I think it's a fundamental right that we have, that we all have healthcare. And not everyone can actually have a voice to advocate for themselves and I think all of us need to make sure that's one of our priories, regardless of what's happening in the world.

Transcript edited by: Sean Lang-Brown

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Tuesday, January 24, 2017

Vicki Jackson on Building the Evidence Base for Palliative Care

Tremendous amount of exciting new data coming out of one of our nation's oldest palliative care services: Massachusetts General Hospital (MGH) just celebrated a 20 year anniversary.  Please see the links below to recent articles and posts, including new studies about early palliative care in bone marrow transplant and early stage GI cancers coming out of MGH.

In today's podcast we interview Vicki Jackson, chief of the palliative care service at Massachusetts General Hospital, the service that provided the palliative care intervention in these trials.  Vicki is known as one of the best palliative care providers in the world.  She also happens to be refreshingly plain spoken.

We talk about many topics, including: how palliative care in bone marrow transplant and GI malignancies is unique, palliative care "pearls" in these populations, what it's like going into a "new" territory for palliative care, and what's next at MGH.


Links to articles and blog posts mentioned:

GeriPal post: How to Incorporate the Results of a New Trial of Palliative Care in Lung and GI Cancers

Effects of Early Integrated Palliative Care in Patients with Lung and GI Cancers: A Randomized Controlled Trial, Temel and colleagues

GeriPal post: Palliative Care is Standard of Care for Stem Cell Transplants

Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplant, El-Jawahri and colleagues

by: Alex Smith, @AlexSmithMD

GeriPal Podcasts can be found on:

Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: Today Alex, we have yet another special guest with us.

Alex: We have Vicki Jackson who is chief of the palliative care division at Massachusetts General Hospital. I had the pleasure of training under Vicki during my palliative care fellowship. She was the fellowship director at that time.

Welcome to the GeriPal Podcast, Vicki.

Vicki: Thank you gentlemen. I'm glad to be here.

Eric: At the start of every podcast, we ask our guests to recommend a song that Alex should play. Do you have a song for Alex?

Vicki: I've been into Iron & Wine and there's a song that I really love. I don't know if you know this one, Alex, but it's called Naked as We Came.

Alex: I learned Naked as We Came. Learned may be a strong word. I learned how to fake Naked as We Came over the last 24 hours.

Vicki: Perfect.

Alex: We will see what happens here. This is a beautiful song, and the words are like poetry, and it's appropriate for palliative care.

Alex plays “Naked as We Came” by Iron and Wine.

Alex: Well, something like that.

Vicki: Samuel Beam would be proud, Alex. He'd be proud.

Eric: Why'd you choose that song?

Vicki: I don't know. I started the indie folk kind of thing and I think that song is really beautiful. It speaks to me about the work that we do, and then also about ... I don't know. How we live life and the impermanence of things and ... I don't know. It just works for me.

Alex: Vicki, transitioning to reason we have you on the podcast today. We wanted to hear about what it's like to be the head, the chief of the palliative care division at a hospital that's involved in so many of these groundbreaking randomized control trial studies.

Recently, and we'll have links to these articles in the podcast as well as Eric's posts about them, you were involved in two major randomized control trials. One; about bone marrow transplant, palliative care and bone marrow transplant. The second was about palliative care for lung and GI malignancies, I believe, early palliative care for advanced malignancies.

I guess the first question off the bat is what's it like going into these areas where palliative care has traditionally not been a part of care, whether ... For whatever reasons. Whether they're not welcome. Whether we're not open to working with them, or whatever. Particularly, with transplant, where there has been such hesitation to involve palliative care early on.

Vicki: Yeah, I think doing these studies overall my experience here is ... I was thinking about this this morning. Part of it is that it's not only amazing work with the patients, but with the oncologist, both the doctors and the nurse practitioners and the nurses, it feels really - especially in solid tumor - a very collaborative relationship and collegial where we're really all on the same page. Part of the pieces, even though it's hard work, we feel that we're doing this and that we're doing a good job for patients, but we're also being engaged and being able to be helpful to our colleagues as well as to patients.

I would say our work ... Our outpatient clinic and palliative care started 15 years ago now. We've had a lot of experience in the solid tumor space. In the transplant world, they certainly referred to us, but the patients who they referred were more likely to be patients with chronic GVH and symptoms in that space. We got experience following patients with them for years.

I would say in the bone marrow transplant space, they would refer when patients were really at a place where they were actively dying and had symptoms that they had a hard time controlling. How this really came to be, and part of what I think we've seen as a major driver of culture change has been really doing the research. Part of this was ... The first study was really understanding what is the symptom profile look like in patients with bone marrow transplant. A lot of the oncologist said, "These patients are fine. They do fine." We found that their symptoms were so severe that sometimes they couldn't fill out the scales that we were really using to measure their symptom burden.

I think showing them what symptoms their patients had, they were really motivated to want to have us engage to try to help with that. The first study we were very mindful culturally was only looking at symptoms. This is not about symptom management. This is not about advanced care planning, or prognostic awareness, or decision making. This is really about symptom management. I would say it's been something where I always say that when we start these relationships with new areas, it's like building a relationship from the ground up. And how do they have these conversations? What did they use to manage symptoms? They can learn from us.

I feel like it's been something where it's this process overtime, but we have really ... It's all in the relationship and us really coming together that we're all trying to do the right thing for patients. The study we're doing right now that we just enrolled our first patient this week is the LEAP study, which is earlier upstream in patients who are just coming in for induction chemotherapy for either relapsed AML or newly diagnosed AML and then setting ... We're really trying to do more communication work and helping with illness understanding and prognostic awareness. Part of what we had to do with them is meet with them and say, "Hey, we're going to support the patients to get through this treatment, but we want them to have a frame and a way to talk about this, because not everybody gets cured."

Alex: Yeah, it does. Eric's got a question, but I have an observation. There's an interesting parallel here between ... We often build our bridges in relationships with patients around symptoms and build that relationship up so that we can have conversations about the more difficult stuff later on. You're saying there's a similar relationship with our referring providers, particularly in new areas like bone marrow transplant, where you first develop relationship around treating their patients with symptoms and then, later, able to move on the goals of care discussions, which are kind of touchy.

Vicki: Oh, absolutely. I think the other thing that we've learned over ... Our palliative care division here just had its 20th anniversary this last month, and I think the number one thing I've learned about how we build relationships in new content areas is you need to start out with something where you all have common ground. A triggered consultation in the heart failure space needs to be with patients who it is a no brainer for them that these patients should see palliative care.

What happens overtime is they see the value. We do a lot of joint visits with our referring provider so they can see what we do and we can learn from them. You see them gradually overtime say, "Well, could you help me with this patient? I know it's not part of the triggered protocol, but that would really be helpful," or, "I had a hard time with this goals of care conversation. Could we do that part together?" I always say it's the stitches and the tapestry and building that relationship and then it expands in a somewhat organic way overtime.

Eric: I think the fastening part for me is you just published two recent studies, one on stem cells transplants, another on GI lung cancers. The GI lung cancer study, there was a lot of crossover as far people in the control usual care group getting palliative care. However, in the stem cell transplant paper, there's really no crossover if I'm remembering correctly. Which it sounds like while you present a data about their symptoms, even during the study, that was not convincing enough to the oncologist that palliative care should be included, should be involved earlier on. Has that changed since the release of the study?

Vicki: I would say what really has changed ... We are much more integrated now on our bone marrow transplant floor. That is absolutely true. Part of it is that the nurses really are interested that we treat symptoms in a way that's different and they felt ... they're more likely to do that.

I'd say the other thing that was really interesting is after we started hanging out with the bone marrow transplant docs and on the leukemia floor, one of the leukemia docs came to me and said, "Would you do a communication training for us?" Another one asked if I would shadow that person seeing patients, because they wanted to improve their skillset.

I think this is so far away from their usual care, that they didn't think about it, and they didn't really believe necessarily that having us involved until we did the study was going to mean that things were going to be better, and they didn't have experienced. They didn't trust that I wasn't going to be a Debbie Downer with these patients and say, "No. There's no way you're going to be cured," when the chance of cure can be 20% to 30% in some of these patients, and that is very real. I think there needed to be ... The proof was in the pudding that they would see that were cheerleaders for these patients and when they didn't achieve remission or they had a relapse, we were there to be in the deep end of the poor with them.

I don't think just giving somebody data is enough, and we know that that's true for multiple studies. It's not enough, and it's about building the relationship, I think, in terms of that kind of integration.

Alex: A question about ... Many of our audience are practicing clinicians. If they wanted to go into the transplant space, is there a particular symptom or symptom pearl that you ... A particular treatment that you found effective or symptom that they should attend to in order to start building that relationship?

Vicki: Yeah, it's a great question. I would say the two things that we did very differently than the way the transplant teams were managing the symptoms, one was really aggressive nausea treatment with the idea of round the clock anticipatory dosing for nausea in those days where we know that the nausea is going to be severe with opportunities for breakthrough antiemetics, I think we use much more Haldol. They did not use Haldol having the Ondansetron or whatever other med of that class scheduled.

The other thing is really mucositis. They would be much less likely, at least here in our population, to use a PCA for those days when the mucositis was really severe. I think their fear was they weren't going to be able to get the patient off the PCA soon enough. In this, they just realized the patients were able to be more engaged, more functional and that there was no problem titrating off the PCA at the appropriate time when the mucositis have resolved.

Eric: One thing that has been coming up a lot in the same time that your stem cell transplant paper was published, there was a meta analysis on palliative care in general about the effectiveness. It made me think, what would the community, the palliative care community's reaction be to your study, the stem cell study, if it was negative? Would we have said, "Oh, you know what? That's not palliative care, 'cause all they did was address symptoms and all the other components of what we do in palliative care was not a focus of this study." It did sound like you had some leeway to address it if you wanted to, but it wasn't the primary goal of the intervention.

Vicki: I get that. I would say though that we started out dealing with symptoms, but a lot of what we did ... One of the pieces of that work that I'm most proud of is the fact that the rates of PTSD were so much lower patients who were in the intervention group. We did a lot of work helping them understand what to expect with their symptoms, how to best cope with that, how to make sense of - how to deal with the anxiety around whether they're going to -what that bone marrow biopsy is going to show. All of those things.

There were certainly a psychosocial component. There was a not an advanced care planning component. There was only a helping patients cultivate their illness understanding and prognostic awareness when patients really got sicker. Unlike in the solid tumor in all of our work, all of those domains are really part of the intervention from the very beginning. In this patient population, when they are sick, it's not the idea that I would be walking in there and saying, "What's going to happen if you're not in that 30%?” If they didn't bring it up, it just wasn't appropriate.

It was not only ... We focused primarily on symptoms, but we did a lot of referral to psychosocial clinicians. We did a lot of help with coping and adopting and managing going through that whole process and helping them compartmentalize a lot of the concerns that they had about what was going to happen with the treatment.

Alex: Briefly, as we're coming to the end here, any pearls or thoughts for people wanting to move into early GI, early palliative care for GI malignancies?

Vicki: I think the take home from that paper, guys, is really that we need to be very careful with assuming that the intervention we use in one cancer population is going to make sense in the same timeframe for another cancer population.

I think what was very interesting about that, if you looked at the quality of life curves, the depression anxiety curves, they were very distinct between those two groups. My sense is I really do believe if we had been following the GI cancer patients 24, 36 weeks out, that those curves would be distinct. I think part of what happens in GI cancers is that they are so symptomatic and, often, when they respond to chemotherapy really improves things. I think the current first line chemotherapy for patients with pancreatic cancer can be really effective, and we have to understand what are the big things that I really talk about when people are trying integrate a co-management model in oncology is you have know your oncology. You have to know what first line chemotherapy looks like in this patient population. You have to understand and know how these patients run off the rails, they get biliary obstructions, they get gastric outlet obstructions. You have to know all of that medicine and oncology incredibly well to be able to interface.

I do think it's humbling from a research perspective that I very much worry about studies where it's all-comers with metastatic disease and all different kinds of treatment, because I think it's really ... It's hard to interpret that data.

Eric: Do we need a palliative care study for every disease, every type of cancer, heart failure, COPD, ALS, Alzheimer's versus Parkinson's, dementia?

Vicki: Yeah, I do think that we should not assume that we lump in and our intervention is going to be the same in all these patient populations, because their illness trajectory is different. I think we saw that very clearly in this followup early intervention study.

We try really hard here when we're moving into a new area to have the first study be to really understand what the illness trajectory looks like for these patients so we can adapt our interventions and think about them differently.

Eric: I got another question then. Especially as new novel cancer targeted therapies are coming up that it's really game changers in, let's say, lung cancer and what it looks like. What does that mean for palliative care? What does it mean for past studies done on these patients?

Vicki: It absolutely changes the landscape. I think that there are ways in which ... MGH really sees themselves at the forefront of targeted therapies in immunotherapies, in melanoma, in lung cancer, so we deal with this all the time. There are ways in which these patients who have targetable mutations behave much more in terms of their illness trajectory and their illness understanding and prognostic awareness to an AML patient. A patient who has got a 30% chance of cure, there are ways that these patients have a long term survival that is really real.

We have to know that and understand it, and if the oncologist says, "Vic, I've got a new targeted therapy that I think is going to work for this patient." I think about that very differently than them starting a 5th line chemotherapy on a patient with lunch cancer, where I think the likelihood is benefit is very small.

The other thing that I really have to say I'm quite concerned about, with both the immunotherapy and the targeted therapies, is that I feel that what we're seeing in practice is patients have a terrific quality of life, much better than before for a long period of time. I am quite worried that that last six months of people's lives can be worse. Part of it is, is what we're seeing here is a horrible bony disease burden. There's a way in which this must be a sanctuary site in some patients and these medications are not effective. We have had pain doing much more lidocaine, ketamine, and we've done culdotomies more than we have before for patients who have no visceral disease. They're not going to die anytime soon, but they have such a horrible symptom burden. It is harder to prognosticate. We've got to really understand what our oncologist think can happen and how these drugs can be helpful. It's absolutely change, at least, the way our team thinks about symptom management, because it can be much harder than it was before.

Eric: It also sounds like we need a little bit more research what the end of life looks like for these individuals.

Vicki: Exactly. I keep pushing our groups here to really try to help us articulate it because, clearly, there's a referral bias for me. I'm going to be seeing only the patients – you know, I'm going to be having a larger population of patients on targeted therapies who have horrible symptoms to control.

I will say there feels like a very qualitative difference that we all notice in terms of acuity. Also, I think the patients coping in illness understanding, because when you've been taking a pill everyday for six years and then you fall off the rails and you really go off the cliff as a patient, it's a very different place how we need to intervene and how we've helped them in those six years before things really get tough.

Eric: Right. Vicky, we really want to say thank you for joining us on our podcast and for your time and expertise.

Alex: Yeah. Sad we didn't get a chance to talk about BJ, palliative care rockstar, your quotes about him in the New York Times, which just so captured Vicky Jackson as well as capturing BJ. I couldn't say those things you said.

Vicki: I know. I don't know that I should have said those things I said, but it is what it is. Yes.

Alex: No, those are great. We loved it.

Vicki: It was a pleasure to talk with you guys and I'm happy to come back any old time.

Eric: Alex, do you want to end this off with another verse?

Alex: Sure thing.

Alex plays “Naked as We Came” by Iron and Wine.

Transcript edited by: Sean Lang-Brown
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Sunday, January 22, 2017

A Podcast with Dame Cicely Saunders

Yes, we have a podcast with Dame Cicely Saunders, the founder of the modern hospice movement.  No, it's not one of the GeriPal podcasts, although that would have been a very impressive feat.  Rather, Saunders is one of the "castaways" of BBC's Desert Island Discs originally published in 1994, slightly over a decade before her death (click here for the podcast).   

The format of the show is that guests are asked to imagine they are cast aways on a desert island.  They must pick recordings to take with them and discuss the reason why they are bringing them.  They also discuss their lives and what they have learned along the way.

Saunders discussed her schooldays, how she trained as both a nurse and doctor, the development of  St. Christopher's Hospice, euthenasia, and, shocking, how she fell in love with one of her patients.

I've had a chance to read a lot about Saunders, but there is something about hearing her voice that really makes recordings like these something very special.

by: Eric Widera (@ewidera)
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Friday, January 20, 2017

House Calls are Old-School

Dr. Heidmann on the way to an apointment.

This sunny Saturday morning, I drove to a couple of house calls in my Northern California rural county, situated behind the redwood curtain. Covering both hospice and my program, Redwood Coast PACE (Program of All-Inclusive Care for the Elderly), the day is brisk with phone calls. I am listening to Bruce Springsteen read his autobiography, Born to Run, which makes the house call miles fly by. Bruce's story speaks to me about coming from almost nothing and practicing until you start to make something beautiful. He had an imperfect family, no money and little education. This hard scrabble existence is still a real one for so many people, including many of those I serve. And the fact is in small town America, providing healthcare can feel like a hard scrabble existence. People are astoundingly sick, reminding me of my rotations through San Francisco General Hospital, but without the resources of a large tertiary medical center. Lack of resources in our town has allowed (or forced) us to adapt, and to try things that best serve our community. Which brings me back to the house calls.

House calls are old school. And like many things old school are enjoying a retro hip revival. Economically they can make sense (such as potential decrease in expensive emergency room visits and/or hospitalizations), though certainly they are not a high-productivity model for a physician. From the perspective of the person at home, not having to change clothes and find a ride in and avoiding spending 13 hours in an unsettling ER facility is likely a big plus. Mostly though, they are just one tool to provide the best possible care to a vulnerable population.

I have been thinking a lot about best possible care (thank you Ira Byock), as I watch our already broken healthcare system be recklessly dismantled by Senate and Congress. What does it mean to support health in our society, and how can we effectively do no harm in a system that although good-intentioned (for the most part) tends to equate more care as better and forget about the very basics needed for well-being?

Palliative care wraps around an individual and their supports to address suffering and navigate the rabbit hole of healthcare. The PACE model does this as well, with our interdisciplinary team of social work, dietician, nurses, doctor, nurse practitioner, recreational therapist, physical and occupational therapists, care coordinator, home care coordinator, drivers and home and Day Center personal care attendants all in a constant dance with our PACE participants, trying to help them with their goals of living, which can be as varied as "to stay out of a nursing home" to "going back to college". Everyone on our team is important, but I have to give special kudos to social work. They are often the ones seeing that the basics are in place, as tending to the deeper suffering and goals (including a controlled blood pressure or a pretty hemoglobin A1C level) is going to be tilting at windmills until a roof is over the head (and not caved in, as one did recently), food is available with a way to prepare it, the heat is on or blankets are in place, the dripping mold is reduced, the abusive situation is calmed, and the bills are paid. If you have never seen a PACE social worker go toe to toe with a slum lord, it is a sight to behold.

Sometimes I ride my bike to house calls, with my old school doctor bag (brown leather, I love that thing) strapped on the back. A recent visit to a 90 year old woman from the Azores had her worried about me, saying with concern "Doctor, you are on a bicycle!" For her, this was a sign of poverty. I reassured her I enjoyed riding. And admittedly my bike is a pretty sweet ride. I have made dozens of calls to her house, often leaving with crocheted booties and the lingering aroma of her cooking in my olfactory lobe. She died last week, with hospice joining our team to give best possible care. I can tell you she felt cared for as a person right until the end.

With all of our technologies, we seem to have lost track of what it means to promote well being in healthcare. I feel lucky to have found myself in a role that tends to this, and that makes me feel content as a physician. I get to meet people where they are, figuratively and sometimes literally. I always try to understand their goals, as people, not patients. I have a team to offer the expertise I do not have. I work in a model of care that has served elders with an holistic approach for 45 years. This model really should be extended to everyone with chronic medical conditions, mental illness, and complicated medical issues to navigate. The future of such innovation is pretty murky right now. Those of us who are passionate about geriatrics, palliative and end of life care have to keep fighting the good fight.

Bruce Springsteen wrote a song "We Take Care of Our Own." It points out the merciful and loving possibility we hold in our nation which might find conflict in blind patriotism or trust in the powers that be. What does this have to do with healthcare and my day of house calls? Just this: we have a responsibility to the people we serve, to our own well-being as healers and as people of relative power in our society. We have a voice, and we should use it. Also relevant: never underestimate the value of a good book on tape or some solid rock and roll music to take the sting out of a day on call, in the field.

by: Jennifer Heidmann, MD, is a physician who blogs regularly at redwoodsandrunning
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Saturday, January 14, 2017

Advance Care Planning Volunteer Certification?

The Colorado Health Foundation has recently funded a host of proposals around our state to increase advance care planning (ACP) in Colorado.  The proposals I’ve heard about seem quite innovative.  Many, including ours, are utilizing a volunteer workforce to implement the ACP.  Some of us at the University of Colorado, in partnership with our friends at the Denver Hospice, are working on a project to create a “certification program” for advance care planning volunteers.  I keep thinking of it as being similar logistically to CPR certification.  Obviously, that analogy is not perfect – ACP volunteers don’t have to do chest compressions…and CPR volunteers don’t have to have skills in communication.  However, the idea of a program where someone can learn the basics, practice, get feedback, and become certified is really exciting to me. 

Through our development, we’ve begun to wonder and question our assumptions about what a volunteer can do.  We are hoping to get some input.  We’ve put together a very short, 7-item survey to get people’s perceptions on what kinds of skills an ACP “certified” volunteer should have.  This is not research – we’re not planning on publishing this survey.  Really, we just want to ask people broadly what their thoughts are as we go forward.  The survey is anonymous and should take 3-5 minutes. Thank you!!   https://www.surveymonkey.com/r/328GVQL

by: Dan Matlock
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