Thursday, August 2, 2018

Number Needed to Tweet: Podcast with Charlie Wray



This week we talk with Charlie Wray, MD, Assistant Professor of Medicine at UCSF, about why clinicians should use social media in their professional lives.  Charlie is a hospitalist and the Associate Social Media Editor for the Journal of Hospital Medicine.  His arguments for using social media are germane to all clinicians, however.  "Number Needed to Tweet" is the title of his recent grand rounds on this subject.

Charlie is a natural at explaining why we should use social media in our daily professional lives. He also works hard to debunk common reasons for avoiding social media (we couldn't help but chime in).  He often does so with stories, as with the story of how a patient of his need a certain kind of undergrament (read "adult diaper") not carried by the hospital.  As he was walking back from Walgreen's after purchasing one for the patient, he tweeted this: 
And received 55 responses, 201 likes, and 21 retweets.  Many of the responses are a mixture of heartwarming and humorous, and worth a read.  Some favorites - "gave a patient my playstation 2 so he would stay in the hospital," "I hand delivered a chocolate chip cookie every day to get a patient to take a daily injection of penicillin for neurosyphillis,"arranged for dying patient to get married in the hospital."

Enjoy!

-@AlexSmithMD

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Transcript:

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

Alex: This is Alex Smith.

Eric: Alex, who do we have in our in-person studio audience?

Alex: In our in-person studio audience we have Charlie Wray, who is Assistant Professor of Medicine here at UCSF, and he works here at the San Francisco VA, and he's a Hospitalist. He's also a social media editor at the journal of Hospital Medicine, right?

Charlie: That's right.

Alex: Welcome to the GeriPal Podcast, Charlie.

Charlie: Thanks, guys.

Eric: Welcome! Before we talk about, the title again was, for this podcast is, Number Needed to Tweet? Is that right?

Charlie: That's right.

Eric: We always ask all of our guests for a song for Alex to sing.

Charlie: Yeah, so looking at Twitter, you have a little bird as their little icon, so I tried to think of a band that had a bird in it. Thought about The Black Crowes, one of my favorite bands growing up as a kid. And I think one of the songs, if I was ever stuck on a desert island and could only listen to one song for the rest of my life, I think this one might be one of them. Which is, She Talks to Angels, by The Black Crowes.

Eric: Nice! We should do that. Ever heard of Desert Island Discs, it's an old BBC show? Where they ask people, what would you bring to a desert island?

Alex: If you could only listen to one thing, or one disc for the rest of your life, what would it be?

Eric: There was one with Dame Cicely Saunders.

Alex: Wonder what she said? That's good.

Eric: Before we go more on a tangent, you wanna give us a little love?

Alex: Little bit of Black Crowes here. Terrific choice. [Singing]

Eric: I could tell Alex likes that song because he did the extended version in the beginning. That was fantastic.

Alex: It's too good to do a short snippet!

Charlie: You should keep going.

Alex: I even cut it a little bit!

Eric: This entire podcast is just gonna be that song. Over and over again.

Charlie: That's fantastic. That's great. Great job, Alex.

Eric: So, Number Needed to Tweet. Charlie, how did you get interested in social media, and especially social media and academics.

Charlie: Great question, and I get this question quite frequently. I think it sort of stems back to when I was a resident. I was a good resident, I was sitting at home, I'd be reading these really interesting articles that I would find really fascinating. My wife, who's a pediatrician, was a resident with me, I would sort of lean over to her and I would say, "Check this out! Look at this. This is really cool." And she would give me this really sort of disdainful look of like, I don't care. And she would literally say, "I don't care." So I would be left with reading things that I found really interesting and I wanted to share it with people, and I could share it with my co-residents, but just not at all hours of the day, of course.

And I was on Twitter, and then I sort of noticed, hey other people are doing this. Other people are sharing the things that they found interesting. So I started posting articles that I found interesting, along the way, people would respond. So it was a way for me to sort of have a conversation with people about medical topics that I found really interesting. I noticed that it was a place where I could put my voice out there, but I could also listen to other people along the way. So it was a good give and take. So that's when I discovered it. Then, just like as most people get into it, you just start off slow, then you get more and more and more involved over time. That's how I kind of got involved.

Alex: So let's bring it to the contemporary conversation. I remember in your talk about this, and you give grand rounds recently with this same title, you said that there are a number of barriers to people using social media. Physicians and other clinical providers and health care professionals, in particular. Could you talk a little bit about that?

Charlie: Yeah. So there are a few things that I think people find somewhat intimidating. The first is the overall intimidation factor, the idea of like the whole world is listening to you as you're trying to throw your voice out there. So I think people get intimidated by that idea. Is the idea of it taking too much time out of their lives. I think a lot of people already, your mental bandwidth is already is sort of stolen from your work to your home life. And this is one extra aspect that I think people try to add into their lives and I think they fear that it might sort of take over their lives in some regards.

And a lot of people have asked me about that. So how do you balance your social media work with the things that you're sort of doing? And it just takes a little bit of will power, I think, just like anything else. So I think people becoming overwhelmed with it is another issue that I think people sort of run into along the way.

Alex: Yeah. It's one thing we hear quite often, Eric and I actually just did a teaching session for the new palliative medicine fellows about social media and palliative care. And one of the major barriers that they brought up was, how am I going to find time for this with all of the other things that I have to do, and I'm trying to cut back on screen time?

Charlie: Right.

Alex: Isn't this going to make the problem worse?

Charlie: Right. I think that's a fantastic question. And this is the way I rationalize it, and I will put the emphasis on the word rationalize it. My time on social media, I've really tailored my stream, I've tailored what I listen to and what I pay attention to, to be following medical individuals and medical topics. So, my rationalization is that, when I'm on there, I'm kind of working at that point in time.

Alex: Yeah.

Charlie: I am keeping my pulse on the medical community, trying to figure out, what are people talking about? What's new in research? What's new in med ed? And that influences my work. So part of me rationalizes as my time on social media as part of my work at this point in time.

Alex: And I think that's what we generally do, as well. We focus on using social media, Twitter in particular, it's really a professional focus for us. And we save time, actually, by letting others kind of crowdsource. Like, what is the thing I should be reading, because everybody else is talking about it? And then contribute to that with our own individual take.

Eric: Right. Do you find that helpful, too?

Charlie: The crowdsourcing?

Eric: Yeah.

Charlie: Absolutely. The thing I try to convey to people is, I've read hundreds of articles that I never would have found on my own. From journals that I just don't subscribe to, that I don't even know exist. That have sort of come my way because somebody highlighted it along the way and said, "Check this out. This is really interesting." So, absolutely. I've been exposed to ideas and topics that I wouldn't've found on my own. And it's certainly influenced my practice and It's certainly influenced the way in which I think about medicine, as well. So, absolutely.

Eric: What about the argument, who really wants to hear what I have to say? Why should I go on social media, 'cause like, who am I? Who am I to tell people what's interesting or not?

Charlie: Yeah. Man, I think everybody has a story. I think everybody has something to say. I had that feeling and I still have that feeling. Who am I to say something and anybody just sort of listen to me? But I think everybody has a story. I'll give my one example.

So, yesterday, we have a patient on my service who required a certain type of diaper, and we didn't have it here. So, what did I do? I went down to Walgreens and I came back and I got them for him. And I tweeted out, because I thought this was an interesting idea of, what are special things you've done for your patient, to keep them in the hospital and to keep them happy? Tweeted that out there just to sort of say, what do people do? And I had, I think, 40 or 50 comments already about what people are doing to sort of keep their patients in the hospital. I found that they have a story. I think everybody has a story to tell and bring to that conversation. I was completely enlightened by almost every single one of them. I think it just shows the good in the world with that example.

Alex: Terrific. So we've talked about some of the main barriers, and you've talked a little bit about reasons to do this. Could you give us a little bit more about reasons to do this? Maybe first starting with people who are in clinical practice but not researchers.

Charlie: Good one. So for the individual who is not a medical educator or a researcher, I think one of the areas that you can really benefit from social media is using social media, again, as keeping your finger on the pulse of what is happening out in the world. Because I think a lot of clinicians end up sort of operating within their bubble, within their institution, doing their own thing. Then, once a year they'll come out of that bubble. They'll go to a national conference. They'll hear what's sort of going on. And then they go back into their bubble. Yet I've often times argued that social media is a way to sort of stay outside that bubble constantly. From, what trials are coming out? What do people think of outcomes from these trials? And these are things where I think, as individuals, we can think about them, but I'm not an expert on a lot of these things.

So I think hearing how other people sort of interpret the new medical literature, I think is a great way for people to, again, sort of extend their boundaries and not be just sort of insulated. So I think as clinicians, it's a great way to just hear what other people are doing and or practicing.

Eric: Yeah, I agree. I think there's a lot of different types of social media, too. So, just podcasts, I listen to Curbsiders a lot, great podcast. Just to stay up with internal medicine topics. And sometimes, like, I loved their hyponatremia topic.

Charlie: Yeah!

Eric: Oh yeah it was great!

Charlie: Joel Topf gave that one. And he’s fantastic, absolutely.

Eric: It was as amazing.

Alex: As amazing as hyponatremia can be.

Eric: It was. It was great. But like, learning from all different types of whatever. If you like the audio component, listen to podcasts. Or Twitter for short, bite-sized stuff. Or blogs if you like the reading. There's another one that came out on the New England Journal, I think it was the New England Journal, about just sharing stories and the importance of just sharing stories.

Charlie: Right.

Eric: Using social media. Especially for people who may not have a lot of colleagues that they're working with.

Alex: Right. People who are in rural areas may not feel a part of a community. You may be the only palliative care provider in the region. But you can connect over social media with other people who are. Well, how about the research folks now? What's the reason to do it for the researchers? Because I am a researcher. I publish and I'm done, right? Isn't that it?

Charlie: Yeah.

Alex: No?

Charlie: Right. So I have a nuanced viewpoint on how researchers should engage with and on social media at this point. So, 10, 15 years ago I think the paradigm was, you wrote your paper, you sent it in. It was published. It was printed. It went out. Everybody walked out to their mailbox and picked up the newest issue of JAGS and read Alex's paper. But we don't flip pages anymore to find information, we scroll on the computer screen at this point. My argument at this point is you spend, on average, people spend months to years on a single paper. You submit it. It's sent out there. And then, who reads it? There's been studies that show, on average only 10 people are ever going to read your article. Half of all articles, only three groups of people are going to read them. The authors, the editors, and the reviewers.

Alex: That is sad.

Eric: And the author's mom.

Charlie: And the author's mom, right. Right. And the author's mothers will, of course, read it. So I feel like you're doing a great disservice if you just stop at the publication point and don't help disseminate your research. And I use social media to disseminate my research, my colleagues' research, research that I think is actually engaging and interesting.

Eric: But as a researcher, aren't you supposed to be a neutral party that just delivers the facts and let other people deal with all that dissemination and interpretation.

Charlie: Yeah, I wish. I wish that would be the case. But if you've ever read a paper, and often times when you read a paper, and you're like, well why didn't they think of this? Why didn't they do that? And what about this? You know, social media allows you to engage researchers on a level that you couldn’t. Again, 10, 15 years ago, certainly you could email them, but very few people probably did that. 30 years ago, you could have written them a letter, but nobody ever did that. But now, when I see a paper written that I think is really interesting, and I have a question about it, and I can find that author out there, I can engage them very quickly on that.



Eric: Yeah, I also just clicking on the Altmetric scores to see what are people saying about this article that just came out. Often times looking through the Twitter timeline for that article using the Almetric score, just to see, how are people interpreting this?

Alex: You had some really interesting statistics in your talk. In fact, there was a study in your talk that you cited about journals that were promoting articles using Twitter alone versus Twitter plus a visual abstract. Maybe we should back up for a second and talk about visual abstracts and what that is. What is a visual abstract?

Charlie: Good question. Visual abstracts are, if you sort of think about a poster presentation at a national conference and look at those posters. If you just took that and made a digital format of that, but with the idea of making it much simpler, only focusing on the sort of the outcomes, the results, and the conclusions, and then using visual cues to sort of help people remember that information. That's a visual abstract. Visual abstracts were created by a guy, Andrew Ibrahim of the University of Michigan, probably 2 years ago. In the Twitter sphere, they've gone gangbusters in the past year and a half. Last I checked, over 70 journals were using them to help disseminate their work. Several institutions use them as well to sort of spread their word as well.

As you mentioned, at the Journal of Hospital Medicine where I help as a social media editor, we've been using it for about a year and a half right now, and we've noticed anecdotally and empirically that tweets that have visual abstracts that sort of have visual cues with them, do much better, they're disseminated much further. And Andrew Ibrahim actually did a study in Annals of Surgery that showed that tweets that had a visual abstract with them, were tweeted almost 8 times more frequently than tweets that didn't have them attached.

Alex: That is impressive. Eric, you've done some similar work with JAGS. Do you want to talk about?

Eric: Yeah, definitely. We've done visual abstracts. I think the challenge is just from a, like I run the JAGS social media content, is that I don't have the time to do visual abstracts for everyone, so it's really trying to get authors to do it. I think the other thing that we've seen is it doesn't just need to be a visual abstract, anything visual. So figures, trying to increase the visual aspects of our posts. Significantly, I think that doubles the amount of people who interact with our content.

Charlie: Right. I think there's some good sort of behavioral science work that shows that if you don't catch someone's attention in something like 30 seconds, you've lost them. I think that's probably dated, I think you've got like 5 or 6 seconds nowadays.

Alex: Yeah, less.

Charlie: So I think the visual cues are a great way of trying to do that.

Eric: So I think this does create one of the things that people are worried about is, again, as my role as a neutral party of disseminating facts versus am I like a newspaper editor that just wants to throw out the flashiest, catchiest title to bring more people into reading my article? How do you balance that?

Charlie: Yeah, that's a fantastic question. I think as a scientist, as someone who attempts to remain as objective as possible, whenever I do a post a visual abstract or anything to that notion, I try to remain extremely true to the study. And we, at JHM, have sort of come up with a policy where I don't change the wording. I don't take anything from the author, or rather, I don't extrapolate from their paper, and we use exactly what they have presented to us. So we're not trying to build up a paper, and we're not trying to sell it by any regards, we're just trying to present it in a visual formatting that people will hopefully engage in sooner and quicker.

Alex: Yeah, that's a great perspective because this isn't about sensationalism. The goal isn't dissemination for dissemination's sake. It's about clear communication of the essential findings of the article to as many people as possible. And by doing it clearly using visual abstract and means that are quickly accessible to people, you may draw in more people to do that research. But that doesn't mean crossing that line into sensationalism and just for the sake of getting hits on your Twitter feed.

Charlie: Right. It's a slippery slope, certainly. But we try not to fall down that slope.

Eric: What about for educators? Is there a role in social media?

Charlie: Absolutely. And I will use you guys. Eric, I used you in my example in my talk a little bit, and many of the sort of program directors and fellowship directors here at UCSF. The primary modality that I think educators and mentors, which I’ll sort of group in here, is how to support your students, your mentees along the way. And there is nothing better than highlighting their successes out there. I think people feel that nice sort of, it's the virtual pat on the back from your mentor if they post your work. If they post a picture of you standing next to your poster, or of you on graduation day, or the good work you're doing in the clinic. It's just a fantastic way, I think, to support your trainees. And I think medical educators, and the ones who I've seen, do it really well, often use that as a way of doing that.

Alex: People feel honored and respected and important when you take a picture of them alone, and then when you take a picture of them and then disseminate it on social media, they really feel acknowledged. And it's pretty simple to do.

Charlie: It really is.

Alex: But it's very meaningful for your mentees.

Charlie: Absolutely. I've seen other folks do this a lot. If you've got a substantial following and you have been deemed a clinical connoisseur, somebody who is sort of good at clinical messages, people will follow you for your academic knowledge. So there are a few guys I can think of off the top of my head who are really good at interpreting and reading EKGs, so they are always posting tidbits and facts about how to be a better interpret EKGs. So that's another way in which you could sort of feed information, I think, to your learners through sort of asynchronous ways and through the nontraditional ways of teaching as well.

Eric: Any other reasons why we should be more involved as physicians or clinicians? Because we're busy with our clinical lives. Any other reasons why we should get involved?

Charlie: Yeah, this is something where I've gone back and forth on this over the past several years. And I think we should be involved. Don Berwick wrote an article in JAMA about a year ago, sort of really advocating that we're at a point where physicians for many, many years have not really had a voice, either socially, even in a lot of the medical debates. And he had this just very poignant article with the idea like, how do we get involved as physicians, and how can we do it? And if you sort of look at all the options that we have, are you going to call your senator, are you going to sort of get involved, are you going to go to Washington or anything like that? And probably not.

But it's as simple as sort of tweeting something out for something that you believe in, be it patient advocacy, be it of health policy, be it a clinical issue. I think that's just one way of getting your voice out there and being heard and being acknowledged as a physician. I think a lot of people have argued we're not as vocal as we could be, and I think this is just one extra avenue in which we can.

Alex: Yeah, one extra avenue, and it's part of our professional responsibility. I'd say as a profession, we have a responsibility not just to care for our patients but also to think about the larger health policy context in which that occurs, and advocating for policies that promote good care for our patients.

And we can do that through social media. And we can also counter misinformation that's disseminated via social media, such as death panels, which first appeared on Sarah Palin's Facebook page. So we need to meet that misinformation where it occurs, and disseminate thoughtful, appropriate, accurate information about what our services are and polices that promote them.

Eric: But it's hard enough just being a good clinician. Now you're adding all of these other things that I should be doing.

Alex: Eric! If Trump can do it, you can do it!

Charlie: Why aren't you awake in the middle of the night tweeting, Eric?

Eric: Occasionally I am. No, but I'm serious. I think this is the big challenge, is that just over the last, I finished med school in 1998, there was very little talk about quality improvement, and now we're supposed to be quality and safety experts.

Alex: You finished med school in 1998?

Eric: No, I started med school in '98. So I guess 2002. Alex and I were in the same graduating class. Sorry, I lose track of time. But even like 2002, how many times did we hear being quality and safety experts? That was not part of our med school training. And as the years came up, it just seems like, in the last 15 years, now I have to be experts in all of these different things. And now you're telling me I got to be an advocate too. Like, what the hell.

Alex: Yeah, life's hard man. Being a doctor is hard.

Charlie: It sounds like I think there's a lot of stuff on burnout out there that maybe you should look into.

Eric: I'll work on that. #burnout.

Charlie: I don't have a great answer. I struggle with it as well. I have a full-time job just like you guys. I have kids and family at home that I would love to spend more time, and this certainly adds something extra to it. But I find a way to fit it in, and I think it's somewhat possible.

Eric: Yeah, and I think of actually going back to the burnout literature is actually finding that meaning in one's work is exceptionally important to prevent burnout. And advocacy, safety, all of those things could actually add to one's wellness rather than distracting.

Charlie: Right. Yeah, it comes back to one of the things that I often sometimes say about Twitter and social media. So I think one of the fallacies is that a lot of people sort of enter into social media and think, the goal should be getting the greatest number of followers that you possibly can. That's not what I do. To me, it's about finding your culture, finding your following, finding your group. Because the other reason that I actually find social media engaging and helpful in my life is I can find people who are struggling with life and work just as well as I am. And so sometimes you're like, "Man, I just had that paper rejected again." And I scroll through my Twitter feed and everybody else is talking about their papers they got rejected. And it's just, it again, it expands my community outside of the folks who I have sitting right next to me. And that's helpful in my life.

Alex: And it's Bob Senter who I think is at UAB, likes to say, he has his own blog and he tweets quite often. He likes to say, "I do this social media stuff at the interstices of my day." Very medicalized analogy there. The little spaces in between, in between meetings, during lunch break, just flip to it and re-tweet and have a take on this. Posting, "I'm bringing diapers back from Walgreens for my patient. What are you doing for your patients?" That takes like a minute.

Charlie: And that's how I utilize it just as well as I'm sure you guys are.

Eric: Alright, you've convinced me. I should go on social media. What do I do? Where do I start?

Charlie: So, there's an unfortunate term, but people use it frequently. So, do you lurk? So you get on, you set up your account, and what I oftentimes tell people is just hang out. Follow, find 10, 15, 20, 30 people that you know at some national level and start to follow them. See what they're saying. See how they're actually saying those things. And they will re-tweet people or follow people or give you hints as to whom you should be following. And you will just start following individuals along the way. And it was once told to me that it takes about a year for someone to get really comfortable in social media, from just lurking to posting original tweets. And at first I was like, "Nah, that's too long." And then after about a year, I was like, "no, that's about right." It took me about a year to build up the courage and sort of do it. And you'll find your voice, you'll find the topics that you want to be known for. And then you'll find your group and I think find your tribe in there. But I think it just takes time.

Alex: Yeah it takes time.

Charlie: How about you guys? I mean what do you ... you guys are out there, what do you guys do? Or how would you recommend-

Alex: We do a little podcasting and blogging and tweeting-

Charlie: You may have heard of our podcast.

Alex: But, yeah we do a lot of stuff.

Eric: The thing is that I think the fun part has been that we've always ... it's such a low barrier to try, that if you fail, who really cares?

Charlie: Yeah.

Alex: Yeah.

Eric: And from doing our blog to being on Twitter, to doing these podcasts, like our initial podcast was with a really bad microphone and my computer and that was about it. So the entry barrier was exceptionally small. And that was true for our blog too. And I think it's helped me, academically progress as well. I think most people know me because of the things I've done in social media.

Charlie: Right. Yeah, and getting to one of your points you just sort of mentioned, sort of, if you fail who cares ... I think a lot of people sort of worry "well if I send this tweet out and it's a bad one, what happens? Are people gonna hate me?" I'm like, tweets have half lives of like 3 hours. So if you say something that's either offensive or wrong, or it just wasn't something that came out correctly, it's gonna be gone and in the ether for most individuals, in about 3 hours. And so, you always have the chance to start over after that.

Eric: With a caveat, like, I remember one of Ken Covinsky’s tweets that he sent out once, was around over-the-counter statin use, 'cause it was being considered statins over-the-counter, and he wrote a tweet just saying "NOOOOO" and then he got a call from the New York Times, from Paula Span, to talk about statins over-the-counter. So, you never actually know when that small tweet actually may lead to a much bigger commentary. And we've seen that with our blog posts, where it can get picked up, and next thing you know it's on NPR.

Alex: Yeah when Paula Span was here on our podcast, she said, as far as she's aware, everyone in the New York Times is on Twitter.

Eric: Yeah, every journalist-

Alex: Every journalist in the New York Times is on Twitter. Because it's perfect for journalists. These little snapshots of information they can scroll through. And many of our interviews with New York Times, or USA Today, or other traditional media, have come through things that we've posted on social media.

Charlie: Right. No, I've had the same experience. People have reached out to me, said "I noticed you said this, can you offer a comment?" Or, "what's your perspective a little bit further?" And it's good stuff, they're fun things to comment on and I've appreciated that. And I think that's also to the advantage of social media, is the idea of people are hearing my voice, hearing what I have to say, and I get to comment on it in those more traditional methods as well.

Eric: Why should journals be on social media? You're doing this for Hospice of Medicine, right?

Charlie: Right. Yeah. There are two numbers that I oftentimes quote for this, so the circulation for, and I use this 'cause I refer back to Andrew Ibrahim's study. The circulation capacity for the Annals of Surgery, which is a large journal, is I think a little over 1,300 individuals, yet they have over 35,000 followers on Twitter. So, there's the old Willie Sutton quote of, "why did you rob the bank? Because that's where the money is." And if you're a journal trying to get your voice out there, you gotta go where the people are. And to me, again as I sort of refer back, we don't flip pages anymore, people scroll through computers so that's where you have to be.

Alex: You had an interesting metric in your talk about low impact, medium impact, and high impact. And I wonder, where GeriPal fits on that spectrum.

Eric: Of course, high.

Alex: How did you come up with that, and-

Charlie: Oh yeah, so I didn't come up with it, that's not a Charlie Wray original, I think that's a Jonathan Serbino et al., he's ... there's a bunch of ER docs who sort of came up with this, as you sort of allude to Alex. So how do you, as medical educators, or clinicians, or researchers, how do you sort of measure your impact on social media? And they sort of categorized this. And essentially, low impact you have a certain number of followers, middle impact you have more, and then of course high impact you have a lot of followers. I give you guys high impact, you know I'm not a geriatrician and I actually follow you guys and I enjoy your posts, and that's good.

Alex: Good answer. Right answer, you can stay.

Charlie: I'm giving you-

Eric: We will not delete this podcast.

Alex: But from here it's a short hop to, is there anything in it in terms of promotion? Like for people who are in academic settings, is there anything ... like, why would I do this rather than write an article for a journal that is the traditional currency of promotion?

Charlie: Yeah. We are currently in the wild wild west of how social media fits into academic promotion at this point in time. There are a few places that I think are starting to recognize this a little bit more. Mayo Clinic is one that is now using social media engagement as a metric for promotion. I don't know their internal metrics with regards to that, but they are certainly ... they've been doing this for couple of years now. How do you do this? If you sort of ask some of these guys who've been on social media for a while, it's quantifying your metrics, so if you're putting your work out on ResearchGate, how many people are following you there? If you're a medical educator and you're putting your slides up on SlideShare, how many downloads are you getting there in a year? And you put that into your promotional packet. And granted you just can't put those numbers out there, I think you have to explain your niche, who your audience is, what your platform is, and what you're trying to sell. I think that's the beginning stages of trying to integrate your social media utilization into your advancement. I think over the coming years as people realize social media is a powerful tool, I think it'll be more and more accepted. How we measure that impact? I think we're still trying to figure that out.

Eric: Number of national elections that I've influenced.

Alex: Good! Well this is another important issue, because I think a lot of people are afraid of social media because of manipulation of the social media in order to influence the recent Presidential election. And you were asking when you first came in, before we started recording, who purchased this equipment? I just want to make sure that we acknowledge this was purchased by the Russian FSB, and some guy named Putin.

Charlie: Vlady.

Eric: Through multiple shell companies-

Alex: Multiple shell companies.

Charlie: That's awesome, that's great, that's great.

Eric: No, but a lot of people actually stopped using things like Facebook, and actually-

Alex: I cut down on my Facebook ... I didn't delete it but I cut down on my use of Facebook after ... I did! I did, and I'm coming back to it slowly.

Charlie: Yeah. My response ... When I gave Grand Rounds there was a question that sort of said, was alluding to what you're getting at there, and my response very much is I kind of act like an ostrich, where I stick my head into the ground, but my hole, again, just contains individuals who, you know, physicians, health policy wonks, medical educators, clinicians, to where all the nasty stuff that certainly exists within social media, I really just put my blinders on and try to stay away from that. So I just try to isolate myself away from those things.

Alex: And any rules or suggestions for people who are interested in posting on social media in terms of stuff you maybe shouldn't put on there? Or shouldn't post pictures, tweets, et cetera? Seeing as it's gonna be cataloged by the net, Library of Congress, for all time.

Charlie: I think if you just follow the general rule that if you're in a crowded elevator could you say this out loud? Is a general rule that I sort of use. And then, like anything else, as you're typing out your tweet, read it a couple of times, of course, and then sort of step back and go "how is this going to be interpreted by a general audience?" Or the audience that I'm sort of also aiming at as well. And then of course your photos, I think just being very wary of how things may be interpreted by other individuals. I think is just the larger tenant that I've always adhered to, and what I've always sort of been taught. And then just the final thing I always tell people is be nice. You know this is a place where I think there's a lot of vitriol, and I think people can sort of, it can get sort of angry out there at times. But I’ve found that if you're just nice and cordial people will respond to you much more, I think you'll get much more engagement.

Eric: Great. Any other last practical tips that you have for somebody who maybe is just starting? In that first year, that you have for them, to dive deeper into this?

Charlie: Yeah. One thing I've always sort of advocated for is find a social media mentor, and what do I mean by that, is ... I'm not gonna direct message Eric and "will you be my mentor?" But-

Alex: Everyone. If you're listening to this podcast, direct message Eric.

Eric: I do actually rarely check my direct messages, so just tweet me.

Charlie: Someone's waiting for that response right now.

Eric: Damn you, Eric! Vitriol!

Charlie: But using Eric as an example, the way Eric expresses ideas, or the way he tweets it, if that sounds interesting to you, watch how he does that for 3, 4, 5, 6 months. And then mimic that in some form or fashion. The other idea is don't just post a link, tell me what you're thinking about that link. You know I'm following you because I wanna see how you're interpreting things, or what you think about that topic. And then the other thing I always say is that you'll notice if you follow me, I rarely post anything without a photo at this point in time, mainly from what we talked about earlier, so if there's an article, take a snapshot of that article, throw it out there. Highlight the things that you want people to really key in on. And I think that will engage an audience, people will want to talk to you at that point in time, more so than otherwise. And then just find your voice, and know that it'll take a little time along the way.

Eric: Great, well I want to thank you for joining us. It was a fascinating discussion.

Eric: Thank you Charlie, that was terrific.

Charlie: This is great guys. Thanks for inviting me over.

Eric: Maybe before we end we'll do the 3 and a half hour version…

Alex: Yes! 3 and a half hours! That's what I'm looking for! Extended, She Talks to Angels, Black Crows.

Charlie: That's awesome, I love it.

Eric: The first 2 hours is just the acoustics.

Alex: All right, here we go. [Singing]

Eric: And with that, I just want to thank everybody for listening, we look forward to having you join our podcast next week, and we'll also see you on social media.

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Friday, July 27, 2018

Nowhere Else to Be








The following story is by Jennifer Heidmann, MD, FACP. She is the Medical Director of Redwood Coast PACE in Eureka, CA, as well as a physician for Hospice of Humboldt and a hospitalist at St Joseph Hospital. 

"You played with Oscar Peterson?" I said, and he looked at me for the first time. His feet hung off the end of the too short ER gurney, out of place as was the rest of him here. I fit in, white-coated, pockets weighed down with smart phones, twenty-first century pagers, getting through my review of systems and filing away his monosyllabic answers so I could finger-chat them to the electronic medical record. He is old and congestive heart failure is his ticket inside this hall, which I intuited not by his words which he held close but by his B-natriuretic peptide and plump jugular vein. Like any good musician knows, the well placed silence makes the notes played pop out and grab the listener.

I like to know what people have spent their life doing, in case I can use it against their disease. It might inform me of risk, exposures, personality. The danger in this is defining health as having a role to play. Band member, surgeon, teacher, mother is no one without air to blow their horn, steady hands and sharp mind, a class to prepare, a child in the nest. Fluorescent emergency room shines a spotlight on current frailty. Even outside the ER, in any context: too slow, not productive, and thus disabled.

What is my job? I wield elixirs to right physiologic wrongs. I take clues gathered from words and my prodding touch and produce a finished product, titled by its ICD 10 code. Everyone wants my autograph. I exist because someone else is sick or dying or breaking down little by little.

My experience is expressed in the grey hairs which assert themselves enough that I am no longer asked if I am old enough to do this job. I should have so much to say. Yet what geriatrics and hospice and hospital medicine has taught me is to sit still and be quiet. It has occurred to me that the person I sit across from is my Zen Master. The musician with CHF spoke little by choice, not prone to waste air or add to the cacophony of the emergency room. The teacher with Lewy Body Dementia had words stolen from her. She always had well-meaning sentence finishers at her side. I decided to wait, sitting on my rolling clinic chair, looking at her intelligent face. I can because I practice "don't-rush-us" medicine. Over the months she told me astounding things about loss, and I discovered she had a wicked sense of humor. The silences between my words and hers were long, the kind of focused emptiness where you forget anything else in the world exists. When she could no longer speak at all, I sang and she joined me. You are My Sunshine.

Is it possible we create disability with our definition of health and wholeness? Would dementia or a slow gait or dyspnea on exertion be as pathologic if we did not so worship keeping up? What if the ones we leave behind in our wake of productivity hold the key to the meaning of life in their trembling hand? We have created a society that cannot tolerate and is frankly terrified of infirmity and decline and death. The bills stack up, our careers demand attention, our friends have things to do. If we dare to stop and acknowledge humanity in someone who can no longer wipe their own butt, what does that say about our own rushed existence?

You, patient, are a problem for me to solve. I can reach out and control your atrial fibrillation with the force of my education. I can tell you with some certainty what kind of dementia you have. I can cure your pneumonia and let you see another day. What are your goals of care, I am trained to say. Though I prefer now simply what are your goals or what is important to you? Which is undeniably important but hard to express if you cannot talk or cannot recall what you had for breakfast this morning. In which case I want you to know that I see you. Right here and now, not what you do or who you were or who the world wishes you could still be.

The man with CHF improved, because of or perhaps despite his hospital stay. I brought in my iPad, handing it to him and pushed play. As he stared at the album cover that included his name on the screen, a tune played. He played. He turned the iPad over, wide-eyed, as if to say "what magic is this?" The magic is just this-you and I sitting here together, with nothing else in the whole world we need to do
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Thursday, July 26, 2018

Hospice of Humboldt: Podcast with John Nelson



In this week's GeriPal podcast we talked with Dr. John Nelson, who has been Medical Director of Hospice of Humboldt for 17 years.  Hospice of Humboldt serves the area around Eureka, a mix of town and very rural locations,  and has several unique features, including:

  • Economically depressed since the collapse of the fishing and logging industries
  • Marijuana farms are a major source of employment for the area
  • Relatively high rates of methamphetamine use
We talk with John about hospice in rural America, Hospice of Humboldt's approach to Physician Aid in Dying, and use of marijuana and psychedelics near the end of life.  

Our next post, later this week, will be a story/essay from a physician who also practices hospice and palliative care in Humboldt.  

I guess it's Humboldt week!

-By @AlexSmithMD



Listen to GeriPal Podcasts on:

Transcript:

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

Alex: This is Alex Smith.

Anne: And Anne Kelly.

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

Alex: Today we have John Nelson, who is the Medical Director of Hospice of Humboldt, and has been for 17 years. Welcome to the GeriPal podcast.

John: Well, thank you. I'm quite pleased to be here.

Eric: So we're going to be talking a little bit about providing hospice care in rural America, but before we do that, John, we always ask our guests, do you have a song for Alex?

John: I do. It's Bob Dylan 'Don't Think Twice, It's All right.'

Alex: Terrific, and you're going to join?

John: I will.

Alex: [Singing]

Alex: Well, I got most of the chords, some of them, but really nice harmonies there John. Thank you for joining.

John: Well, thank you.

Alex: So, John, tell us you've been working there for 17 years?

John: I have.

Alex: Thinking back 17 years ago, what got you started in this position?

John: Oh well, it actually goes back to before that. It goes back to my days as a medical student, and basically deaths on the ward. It always struck me as bizarre that if you were off for a day, you'd come back and somebody would just be gone, and there was never any real appreciation or there's a disconnect in that. And that was here actually, I was a medical student at UCSF.

Eric: Oh, really?

Alex: Oh you're medical student UCSF.

John: Yes, I’m a classmate is Steve Pantilat.

Eric: Oh wow.

Alex: What year did you graduate?

John: ‘89.

Alex: ‘89.

Eric: So you did med school, here at UCSF.

John: I did.

Eric: How did you end up, because I don't think probably many med students here at UCSF end up practicing in rural counties in America. How did that happen?

John: I went to med school with the idea of practicing in rural counties. My residency training was in family medicine, and I did that for a long time, I did sort of the whole scope of family medicine including obstetrics-

Eric: What attracted you to more rural medicine? Was that a consideration?

John: Yeah. Well, I like the idea of being kind of an old time family doctor. That's something that I felt was always cool, and I still think it is. I think it's how I approach hospice actually, and it was a terrific background for doing hospice, I think also. I never did a fellowship, there was no such thing as fellowship. I got grandfathered-in in hospice and palliative care when you could sit for the first exam. So, that was what I wanted to do. I thought I would be a rural family physician for the rest of my career and I sort of got this job kind of dumped in my lap. The predecessor in my job was Michael Fratkin, who-

Eric: Oh yeah, who we had on our podcast.

Alex: Prior guest of the GeriPal podcast.

John: Right, and when Michael was moving into the inpatient palliative care stuff, the hospice actually sought me out and asked me to do this. And I had done some work for them previously, I would cover for Michael when he was out of town. So it was sort of my dream job just ended up falling in my lap and that was pretty cool. I've been doing it ever since.

Alex: It maybe would be helpful for our listeners if you described the sort of setting. What is Humboldt County like? They may have heard about it probably, and if they've heard about it and they're somewhere else in America they've probably heard about marijuana.

John: Right.

Alex: They may not have a good idea of the beauty of this-

Eric: Or they think of California as one monolithic place, sort of Los Angeles, San Francisco.

Alex: Right, it's a giant like Bay Watch coast.

John: Which are both very different places anyway. So it is rural, Humboldt County is about the size of the state of Connecticut, I think. It's got a population of about 130,000-140,000, somewhere in there. The main population areas are around Eureka which is where Hospice of Humboldt is based. There are three or four towns that are probably 80% of the population; Eureka, Arcata, McKinleyville and Fortuna. The economy used to be based on fishing and logging, and both those industries are pretty much down the tube. It's a pretty economically depressed area. I think the major employers are the feds, the Federal Government, and the State Government. Healthcare is a big employer in the area too.

Eric: With your nearly two decades of experience now during Hospice in a more rural county, what do you think is unique about providing hospice type care?

John: To a rural county?

Eric: To a rural county.

John: I've never done it in the city so ...

Eric: Well, one thing's unique, you're not in the city, ok!

John: Right. I think it sort of has to do with the kind of socioeconomic status of most rural counties. It's just not very good. So the kinds of resources people in the community don't have the kinds of resources and then isn't even necessarily available the same kinds of resources for health care. So, for example, nursing homes; in Humboldt County, there are four nursing homes. I'm not sure how many beds that is, but it's not very many. It's not enough to meet the need. It's a perennial problem, there is a perennial shortage of beds. I think there are issues with the quality of care, that's not to say anything bad about the people that are there doing it, it's that they don't have enough resources to do what they are there to be doing.

Eric: I can also imagine one of the challenges in providing any home based service like hospice in rural areas, you said that the-

John: Caregivers.

Eric: Well, caregivers, and just it's the size of Connecticut. So if you're located in one part of Connecticut and you've got to drive to the other part of Connecticut to give the care, how do you guys deal with just the sheer size of Humboldt county?

John: Well, by Medicare regulation, it's a 50-mile radius. So we see people who are about within an hour of our office which is located in Eureka, that takes in that whole four or five city area, that is the large majority of the population. But it does exclude some of it, and there is a volunteer hospice in Garberville that picks up some of Southern Humboldt, but that's not as robust a service as Hospice of Humboldt either because it's a volunteer hospice. So there are people who are out of the catchment area who could, oftentimes they'll move in with some family somewhere in the catchment area or we have opened up a hospice house that has some residential beds in it. Also those require a certain amount of resources to be in just because that's the reality of things. Residential care is not part of the Medicare benefit.

Alex: Tell us more about this hospice house and how that came to be?

John: Well, that came to be as a result of actually one of our former executive directors who passed away about a year ago, very big on the idea of creating a hospice house. So we're not for profit, we have a local community board that oversees the operation and she basically got the board backing, creating a hospice house. We did a fundraising campaign which was quite successful, and now the place is built. We opened the hospice house about 2 years ago. It was planned for 12 beds, which is probably a bit much given our size and location. It's currently staffed for six and I don't know what our average daily census in the hospice house is. I know when I left Humboldt the day before yesterday there were five inpatients, three of those were residential and two of those were GIPs.

We use it for that level of care, GIP level of care, we use it for respite. In our area we do quite a bit of respite just because the caregiver issue is such a big deal. Even if you have the money, it's hard to find caregivers. It's just one of the factors of being in a rural area.

Eric: So, tell me, what you think is unique around caregivers in rural areas?

John: I think it's just a matter of population and training. We have a hard time getting staff, we always have openings for RNs, for home health aides. It's just for whatever reason, there's competition I guess, there's not that large of a skilled workforce to draw from.

Eric: I can imagine the geography too, is that the caregivers are much more spread out?

John: Yeah, yeah. We are a spread out area. It's just a big, but not densely populated at all area.

Alex: So you were saying that socioeconomically depressed and that there's real lack of skilled professional caregivers, and also that many of the patients you care for are somewhat isolated socially. Is that true or don't have a lot of robust family and friend caregiver support?

John: Yeah, it varies. I mean, the large majority of our clientele are cared for by family members. There are a high percentage of the social work and time that goes into looking for resources is for a relatively small percentage of the census.

Anne: In addition to there being limited caregiving resources where you guys practice, are you noticing there's other resources that feel limited or other ways that you wish there could be ... there's more challenges in addition to caregiving support?

John: I think that's the big one. If I could wave a magic wand and solve one problem that would be it.

Eric: How about we break out that magic wand again, and let's say that you have this magic wand and you can change anything regarding Medicare payments around hospice. Specifically to help rural hospices, do you have a couple of things that you would do?

John: The silliest thing about the Medicare benefit is that it's tied to not seeking care for whatever the hospice diagnoses are, and so it gets into trouble around certain areas. If that went away, then hospice would be able to concentrate on truly palliative care. My understanding from the time when the benefit was established which was the early 80s, wasn't it? I think it was, what was then the National Hospice Association is now NHPCO, was strongly in favor of not requiring that people give up seeking treatment for any hospice related diagnoses, but that the Congress in its wisdom saw that they needed to do that for some reason.

Eric: Well, they don't really have to give it up, they just have to figure out how to fund it, right?

John: Right. Yeah, right. Which is you know-

Eric: Parsing words out probably.

Alex: Are you non-profit hospice?

John: We are and have been from the start.

Alex: It's really hard for the smaller and the non-profit hospices to be able to afford some of those really expensive treatments for the hospice qualifying diagnosis.

John: Right. But we will do things like I mean, I've done plenty of radiation that's truly palliative on hospice patients.

Eric: Is it easy to get that?

John: Yeah, it is actually because I know the radiation oncologist and I call him up.

Alex: That's the nice thing about being a smaller community.

John: Right. Yeah.

Alex: You know people.

John: Yeah, that is kind of how things get done.

Eric: Yeah. I can also imagine from a efficiency standpoint, because I'm trying to think of many for profit hospices in rural parts of America.

John: I don't know that you'll find them.

Eric: So there must be a reason, right?

Alex: I think there are some. I think there's ... is it four seasons in rural Kentucky? I think that, rural Appalachia I believe? That's a for profit hospice, rather large, covers a huge area.

Eric: But you can imagine, if you are interested in efficiencies like focusing on a large urban environment, because you can just see more patients in one day than you can when you have to spend an hour driving from one place to the next.

John: Right, you know when I do home visits I spend a lot of time in the car.

Eric: Listening to podcasts.

John: Yeah, exactly.

Alex: Good. I wanted to ask, we just completed a podcast with Bernie Lo about physician aid in dying, and he pointed out that different organizations have taken different approaches to the law, and hospice organizations in particular have adopted varying approaches. What has been the approach for your Hospice in Humboldt?

John: We support people but we don't prescribe or administer any of the aided dying drugs. And basically, I think because of pharmacy regulations people cannot take advantage of that in the Hospice House. The whole thing is on hold right now because of the-

Eric: That just got changed, I think that it’s back on as of like a week ago or two weeks ago, but it’s as hifting environment constantly.

Alex: Right.

John: Right.

Alex: Can you tell us about the decision not to prescribe but to be supportive? And what does that mean to be supportive?

John: Well, what we did was, as it was clear that this was going to be coming and because we knew it was coming for like a year before it was even legal. So, we went through a process, and I think part of the philosophy of hospice is that we're not so much concerned with hastening death or prolonging life, we're concerned with what's going on right now and making people be as comfortable as they can be in all aspects of life. I've got to say, I was personally opposed to the aided dying legislation just because as a hospice doc, my concern is that ... I guess people say you can't give up, you can't join hospice, you can't give up like that, but actually this is really much more of a giving up in my mind than hospice is. And I recognize and respect that other people have different points of view. And so we, the Hospice of Humboldt, basically we got a focus group of employees together from various positions administrative, clinical, social work, and figured out what we wanted the policy to be. I was surprised that most people had a very similar position to me that wait, we don't want to be seen as, this is what we do, because it's not. And it's really almost kind of a distraction from what we do. But that being said, obviously other people have points of view and that this is something that clearly there is interest in, and people certainly want to have the right to be able to make these decisions, and it's the law. So, we won't prevent people from getting it, we'll inform people of what the requirements are. In Humboldt County, I don't know how many physicians will actually prescribe it. I know that some have, it's a rural county, there is a shortage of primary care docs there, and how many people are actually doing this? I don't know. I know that since the law is in effect, we've had I think four or five that have obtained the lethal prescription. As far as I know, only one of them is actually taken advantage of that.

Eric: That sounds about right with other national numbers.

John: Right.

Eric: We talked about another one very unique thing that Humboldt is very much known for is marijuana.

John: Yeah.

Alex: Do you have better marijuana for your patients who want medicinal marijuana?

Eric: Or what’s your hospice organization's like stance or thoughts, or do you use it more freely like ... just want to hear kind of your thoughts on marijuana and hospice.

John: Well, I think it can be helpful. Yeah, I think it can be helpful for the nausea thing. I think it can be helpful for the appetite thing. I don't prescribe it. I sign a letter that says I think this person could benefit from the use of cannabis, and one of the local dispensaries, if they have any available for free, they'll give it for free to hospice patients. They don't always have it available, but they'll certainly set them up. I actually wonder, if you go to these dispensaries they have all this ones, there's so much CBD and less THC and this one is good for nausea and this one is ... I have no idea if any of that's true. I don't know how you would like go about figuring that out.

Eric: GeriPal taste test?

Alex: Stay tuned for our next podcast.

Anne: Just prolonged dead air.

John: I mean just my point of view, yeah, I think it can be effective and I don't see any reason to not use it. If somebody wishes to or is open to that. Last at AAHPM, last spring Ira Byock did a presentation on psychedelics. That was a really, really interesting thing and the use of psychedelics in people who just had lost all hope or reason to go on and they were like reporting some pretty fascinating results. It really sparked my interest. Ira, as you may know did a opinion piece in the LA Times before Governor Brown signed the death, end of life options act, opposing it.

Eric: Yeah, he was a strong opponent.

John: Strong opponent, yeah. And he got a lot of feedback from that, but I think what he was suggesting with the psychedelics, is the use of psychedelics that would lessen people's desire to take advantage of that act.

Alex: Well, that's an interesting hypothesis.

John: Yeah.

Alex: There is interest in funding research in psychedelics, I think actually one of our palliative care fellows is interested in doing research, and there's a foundation in San Francisco interested in funding more research in that area.

Anne: We've talked a lot about some of the challenges that your team faces in delivering care and I'm curious to know what do you see as the strengths of the services you provide or the community that you serve?

John: I am so impressed with the people that I work with at hospice. Just the degree of compassion, the degree of camaraderie of working together, the amount of laughing that goes on just in the office when people are talking. It's just a really great group. I really can't imagine working anywhere else. I mean, I work part time for the VA, but it's the same kind of thing there too. It's just people who are truly good, truly care and go out every day and make a real difference.

Eric: Last question just to follow up on Anne Kelly, because one of the things is that, hopefully we have some trainees listening too, and we always talk about workforce shortages in hospice and palliative medicine, which is only magnified in rural counties. When you think about where you live, what's similar to working in hospice? What's one thing that you love about where you live?

John: The sort of natural environment of Humboldt is such an incredibly beautiful place.

Eric: Why should people think about doing medicine in more rural America?

John: One, because there's a need. Two, I think it's relatively easy to make a big difference. I really like what I do, I really like doing it where I'm doing it. And I just get a lot of satisfaction out of it, and I love living where I live, it's just a really great place to live from my point of view. The kinds of things that keep people away from rural areas, I don't know because I always been attracted to them. I like to come to the city but I'm happy living where I am.

Eric: Great. Well, I want to really thank you for joining us and talking with us today. A big thank you to Anne Kelly, who has been a repeat host now for joining us. How about before we end, we get a little bit more of the song.

Alex: A little bit more. [Singing]

And thank you to our listeners. That's the end of this GeriPal podcast, we look forward to you tuning in next week, where we will discuss something else.

Anne: That's a wrap.





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Monday, July 16, 2018

How to Respond to an Inpatient Palliative Care Consult Request



by: Alex Smith, @AlexSmithMD

Each July we post something about an introductory topic for the new fellows.  See our prior posts on:
This year we're going to discuss how to field a palliative care consult.  I'd like to focus specifically on the moment you call back the intern who paged you to request an inpatient palliative care consult.  Other articles have addressed the comprehensive role of the consultant in general, or in palliative care in particular.  This post will focus specifically on that initial phone call.  Some features may apply to outpatient care, and to geriatrics.

Here are 7 questions I usually ask the referring clinician on the initial call:
  1. "What's the story?"  Why was the patient admitted to the hospital?  What treatments has the patient received, and what treatments are planned?  This is what most people get from interns when they field a consult.  This is the normal "minimum" level of information
  2. "Is the patient making decisions?"  This is an important data point.  DO NOT take it as fact that the patient has capacity to make decisions if the intern says they are making decisions. This question is important because it tells you if the primary team thinks the patient has capacity to make decisions, but you need to make your own assessment.
  3. "How can we be helpful?"  I prefer to phrase it this way, rather than, "What is the consult question?"  This is in contrast to other fields, say GI for example, where consultants like to have a very specific consult question.  But sometimes the consultant has a general sense that they need help, rather than a specific question.  Now think about all of the evidence we have for palliative care - palliative care for lung cancer, for GI cancer, for heart failure, for bone marrow transplant - do you recall these studies specifying "palliative care was initiated for patient's whose physicians had a specific consult question."  NO!  These studies were initiated for all patients with that specific serious illness, regardless of whether the referring physician had a specific consult issue at hand.  We should probe generally in a non-judmental way about the primary team's objectives in calling a consult, but not judge if they do not have a specific question. We can almost always find a way to be helpful.  Sometimes palliative care is called when the team (not the patient) is distressed.  Don't block palliative care consults.
  4. "What do you think about the patient's prognosis?"  I ask this question primarily to get the interns thinking about prognosis and the importance of prognosis for decision making.  
  5. "Are there family or friends involved?"  Often interns who are well trained to attend primarily to the medical history neglect to mention the social circumstances in which their patients lives are embedded.  Who is visiting?  Where does this patient live?  What kind of housing arrangement?  
  6. "How long will he/she be in the hospital?"  People forget to ask this question.  I can't tell you how many times we've fielded a long consult request, only to discover the intern intends to discharge the patient this afternoon, and can we please address pain, goals of care, and a discharge plan the day we meet the patient?  Yeah right.  Good to know what you're getting into and set expectations right off the bat ("We can't do all that, but we're happy to meet them and get to know them so we are familiar with them for the next visit.")
  7. "Does the patient know we've been consulted?"  Ideally the patient will have heard and agree that palliative care is going to consult.  Like psychiatry, there are some patients who strongly do not want to see palliative care because of the associations they have with the field.  Asking the intern to introduce the idea of a consult primes the patient for our visit.
What do you think?  Am I too lenient in #3?  Do you require referring clinicians who are not clear about the answer go back, think about it as a team, and formulate a specific consult request?  Do you lack the resources in your hospital to not block palliative care consults?  Do you worry about violating the bounds of the consultant role without a clearly defined question?  What other questions do you ask?  Respond in the comments.

Thanks to Olivia Gamboa, Lynn Flint, and Eric Widera for thoughts on this post.




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Friday, July 13, 2018

Dilemmas in Aid in Dying: Podcast with Bernie Lo



In this week's podcast we talked with Dr. Bernard Lo (Bernie as he is known).  Dr. Lo is President of the Greenwall Foundation, a foundation dedicated to improving Bioethics research nationally.  Prior to Greenwall, Dr. Lo was Professor of Medicine at UCSF and head of the Bioethics Program.  He still maintains a primary care practice at UCSF.

We talked with Bernie about several dilemmas in the area of physician aid in dying, with conversation jump started by his recent NEJM perspective on this topic.  Key areas we discuss include: (1) when ought providers raise the possibility of PAD with patients?  Are they obligated to do so with all seriously ill patients? (2) what do we call it when talking with patients - physician aid in dying? assisted suicide?  or descriptive terms?  (3) In an era of sharp increases in the cost of barbiturates, what are the ethical issues at stake when clinicians are trying new regimens to help patients die with little oversight?  (4) what are there responsibilities of physicians who do not prescribe, or work in systems where prescribing or evaluation are not allowed?  (4) does the current law discriminate against people with ALS who are physically unable to self-administer, or those with early stage dementia, who do not have less than 6 months left to live, and in the future will not be able to consent?

Eric, Lynn, and I were remarking afterward about how skillful and thoughtful of a speaker Bernie is - and how by talking with him we learn how to think through complex issues, and how to provide affirmation up front in response to a question (great question, I think you're right, you've hit on a key point).  He is a master discussant who treats this potentially explosive topic with measured thoughtfulness and care.

Enjoy!

-by Alex Smith, @AlexSmithMD

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Transcript:

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

Alex: This is Alex Smith.

Lynn: And this is Lynn Flint.

Eric: And Alex, who is our special guest today?

Alex: Today, we have a very special guest. We have Bernie Lo, who is Professor Emeritus from UCSF, ran the bioethics program at UCSF for years, and now is President of the Greenwall Foundation, a foundation focused on bioethics research and development nationally. Welcome to the GeriPal Podcast, Bernie.

Bernie: Oh hey, delighted to be here with you today. Thanks for inviting me.

Eric: And we are gonna be talking with Bernie about his New England Journal of Medicine paper called, "Beyond Legalization: Dilemmas Physicians Confront Regarding Aid in Dying." But before we do that, we ask all of our guests, do you have a song for Alex to sing?

Bernie: Alex, if you could sing something from The Beatles? How about "Help?"

Alex: Help! Help, I need somebody! Perfect. [Singing]

Alex: All right, we got Eric to join in the end there.

Eric: Yeah, but I think I was away from the microphone.

Lynn: Yeah, I was just gonna say you were like a foot away.

Bernie: That was great.

Alex: Thank you, Bernie. Thank you so much. Thank you for joining this podcast. So who wants to ask the first question?

Eric: So, May 31st. 2018, opened the New England Journal, well I don't open New England Journals anymore, I actually get it as a table of contents. But I see an article from Bernie Lo about dilemmas physicians confront regarding aid in dying. Before we talk about this article, Bernie, maybe you can just describe a little bit how you got interested in this subject. Why aid in dying? Physician assisted-

Bernie: Well, my interest goes back a long time before legalization. One thing I wanna say is that patients thought about this, patients wanted to talk to doctors about aid in dying, and would actually request that the physicians help them way before it became legal. And even when it was illegal, and now would imagine in states where it's not legal, sometimes some physicians do agree to a patient's request. Sometimes we get so caught up with the legalization of discussions and controversies, that as physicians we sometimes lose sight of the idea that legalization doesn't resolve all the ethical dilemmas that when you've decided which way you're gonna vote on a referendum for example, and thought it out, that doesn't necessarily prepare you for some of the things that will come up in your practice from patients. And how you're gonna respond to those, I think is something that I wanted to write about.

Alex: And you've been in practice as a primary care physician in San Francisco for a long time.

Bernie: Long time.

Alex: Long time.

Bernie: Not quite as long as The Beatles, but...

Alex: And I wonder if you've seen changes in how the physician community has responded to this issue of aid in dying over time? Through the AIDS epidemic, and now with legalization. What have you seen historically here in California?

Bernie: Well I think you're right Alex, that there have been changes driven by both medical occurrences like the AIDS epidemic, and then clearly legalization. I think a lot of people have either changed their minds or become more open to differing points of view, and also I think what's changed clearly is that patients are now much more willing than some patients to talk about these issues and want to discuss them with physicians.

Alex: So I wanted to ask as we get into this issue of dilemmas physicians confront regarding aid in dying, about first you raised this point, and you alluded to it already. That often these requests are not explicit requests. So how should physicians, what clues should physicians be looking for from patients that may be requests for aid in dying that aren't explicit?

Bernie: I think it's like so many things in medicine, that some patients will ask what's on their mind explicitly, and others will get at it indirectly or sound out the doctor. One of the things that I've noticed myself is that people will ask a question about something they saw in the newspaper, or an event like the legalization, the signing of the California bill. Or they'll tell a story about a friend or a neighbor or even a conversation they had. It may just be a question on that level, or it may be a lead in to their wanting to talk about with regards to themselves, or I've actually seen it also with regard to a family member.

So I think doctors need to be open to some of the unspoken, the hidden, the deeper meanings that may or may not be present. Sometimes a question of how do you feel about something is just a question.

Lynn: And I actually have a question. I was seeing a patient this morning, believe it or not, I was doing a video palliative care consult with a woman in a nursing home who has an advanced cancer. And she, this was the third visit today. She was really down in the dumps. She was not feeling well, she was having a lot of challenges getting her symptoms addressed in the nursing home she's in. She's not on hospice at this point. And she talked about passively being fine if her life ended sooner and physician aid in dying of course went through my mind, but I didn't say it, I just explored. I explored, and she didn't bring it up, and I didn't bring it up, and the conversation went on. But it made me think about when do you bring it up when you're not even sure if it's on the person's mind?

Bernie: Well, I think you did the right thing, just to explore, and sometimes the things we do, just open ended questions and listening, being empathic, draws people out. Sometimes I actually will ask explicitly, "You mentioned something a couple of minutes ago that I wasn't quite sure how to interpret, or what you meant by it." And then ask the more direct question, "When you were talking about this, were you thinking about the possibility of taking a medication to end your life?"

It's almost in a way like asking people who are depressed about whether they have a thought about ending their lives by suicide, or being violent for that matter if they're having real anger problems. Sometimes patients will say, "Oh no, no. I would never do that. But I must say, I can understand why people could do that." And that's fine.

Eric: Well Bernie, that brings up an interesting analogy, because the old thinking around depression is if you bring up suicidality, like people are gonna get the idea of, "Oh, wait. I can commit suicide." Now we pretty much rooted out that idea, that it's actually important to bring up thoughts about suicide, and it doesn't actually make people think, "Oh, I wanna commit suicide."

Bernie: Never thought of that before.

Eric: So are we suggesting kind of the same thing here? Because I think a lot of providers think, "Oh, I don't wanna bring up physician aid in dying," because then they're gonna think, "Oh, this is a reasonable option because my provider's bringing it up." Is that something we should be worried about?

Bernie: It is something to think about, Eric. I totally agree. And I think a lot depends on how you say it, and how it comes across. I think if it's a question, is this something that you've been thinking about? Then that's very different than I want to make sure you understand that here's an option that you might want to consider. So I think it's the difference between, Lynn you used the term of exploring, seeing what the patient might've been thinking that they haven't yet articulated, and giving the impression that you're actually suggesting or recommending something.

Eric: Well that's interesting. Can we talk a little bit about the ethics of it?

Bernie: Yep.

Eric: Because if memory serves me correct, I think somebody was working on a bill in California about making sure that people knew all of their options including physician aid in dying. I think nothing happened with that, but is there a distinction between us exploring whether or not people have thought about this and actually mentioning it as an option for around end of life care.

Bernie: Okay, great question. Let me just first say going back, there are people who believe you shouldn't bring up hospice to patients unless they ask for it, because it might be interpreted as a subtle way of telling them, "Your time is up," given the misunderstandings about hospice. So Eric, I think you really put your finger on an important point regarding how does what the physician say get interpreted by the patient? And how do you frame things in a way that you make clear that you're informing people without really advocating anything?

So again, I like to use the ... maybe you guys, sorry you all, do this better than I do, sometimes just bringing up palliative care or hospice, I have a patient now I'm trying to go into hospice discussions with, and one of the family members is really concerned that hospice means giving up, that you're signing a death warrant. But I did want to make sure that it was one of the options, and so I framed it by saying I just wanna make sure you know all the options ranging from sending the patient to the emergency room or this will happen to trying to manage her at home to trying to bring in people that can help relieve her symptoms at home, then hospice is the best way to do it. And I backed off, because I knew there were concerns there.

This may not be something that you want to consider, at least at this time, but I just wanted to let you know, it's one of the options. So I think how you frame it rather than just saying there are five things we can do, and number five is. I think it's really in the context of the relationship that you have, and the goals of care, and what your sense of what the patient’s needs and concerns are.

Eric: Have you or would you ever do the same with physician aid in dying? Would you actually ever say, these are options, and physician aid in dying is another option?

Bernie: I probably wouldn't quite say it that way, but I think people frame it differently. I would say, and there's another approach, and there are some people who consider, think about, and ask for aid in dying, which means getting a prescription for a lethal dose of medicine that the patient takes when they think the time has come in their terminal illness.

Eric: All right, one last question from me, because I think Lynn has a question.

Bernie: Yeah, sure.

Eric: What words should I actually use? So you wrote in this physician aid in dying, there's physician assisted death, there's physician assisted suicide, there's death with dignity. How should I label this?

Bernie: Yeah, I...

Eric: Or does it matter?

Bernie: Well no. I think it does matter because people interpret terms in very different ways and react to things that may have actually been misunderstanding. So I think you've all been through the ... we call it palliative care now, because so many people have negative connotations about hospice. I tend not to use the phrase and just describe what it is. It's talking about and in some cases asking for and receiving a prescription for a dose of medicine that they can take to end their lives.

Eric: That's great. Taking away the label, the often meaningless label.

Lynn: Just saying what it is. That's what it is.

Eric: But we can't do that as doctors. We need to actually not even label it, but-

Alex: Come up with an acronym.

Eric: Like PAD.

Alex: Right, right.

Lynn: We need to give it a name that nobody will understand. [crosstalk 00:14:35] That's why they changed it to HEF PEF from whatever it was, heart CHF. Going back to my patient, another thing that felt like a dilemma to me in that particular scenario, was that I was thinking about, no matter what, my own personal position is on physician aid in dying or whatever we want to call it for the podcast, I had this fear of maybe this because I'm a palliative care doc, I was less afraid of the emotion that was gonna come, and more afraid of the just the sheer logistics of what I would do if this person said, "Yeah, that sounds like a really great option."

And then it got a little stuck in my head of, well am I withholding this information because it's logistically difficult and I don't exactly know how to do this, and I got a little tied up in my head.

Bernie: Those are really, really important questions. And hats off to you for recognizing and being honest with yourself. So the very first thing I think is, you said something regardless of your own position. And I think clearly, doctors will have strong ... many doctors will have strong feelings one way or the other supporting or opposing, and one of the things I wanted to try and put out there is the idea that regardless of which way you come down on would you sign the prescription, trying to ascertain what the patients concerns are, trying to address them in the best way you know how is in palliative care.

All that should be independent. Then you bring up another set of questions, which is really important and we don't really talk about much, which is the logistics. Particularly if in any institution you practice in unless you're in a solo or small group practice where all your colleagues think the same, institutional policies really come into play. And the logistics of how you actually prescribe, what you prescribe, what doses, what pharmacies will fill some of these prescriptions, what if the patient is of sound mind but not of sound body and can't go down to the pharmacy herself? Who can pick it up? If it's in an institution, if someone's in a nursing home, will the nursing home stock the drugs you want to prescribe? Or you can allow the practice to take place? So I think all those are important, pragmatic, practical issues. Well, I guess the question I would come down to is, should you not get the patient interested in a topic that just won't happen because of the institutional constraints?

Or, at least for some patients in nursing home, could friends or family be mobilized to help? For example, I don't know if you all are ... I know Alex and Eric, you're at the VA, I don't know if you are as well, but...

Lynn: Me too, yeah.

Bernie: Yeah, so if it's the VA nursing home, I'm sure they have policies, and they may be national policies.

Eric: Yeah, with federal, you can't use federal funds for physician assisted suicide or euthanasia, so there's a Congressional law that we can't actually bypass. But it doesn't mean that we can't talk to our patients. Explore their wishes around physician assisted dying, or connect them to potentially other resources without actually making referral. We can't make a referral. We can educate.

Bernie: You're forbidden from making a referral.

Eric: We're forbidden from using any federal funds and making formal referrals.

Lynn: But we could give them information.

Eric: And educate.

Lynn: And educate, yeah.

Bernie: So, but this now gets down to nitty gritty. Are you allowed to say here's the state website that explains all this?

Eric: That's in education. I would say yes, it's like we're educating. We're not using federal funds to help people with the process, but we're educating, just like we would educate people on any mental health condition or option.

Bernie: Could you give them a list of advocates?

Eric: Yeah, so this is great Bernie, because it's not like I'm on a national podcast that I'm gonna get in trouble for talking about. I would say again, anything that has to do with just around education, as long as I am not sending them out to another physician who would prescribe it, personally I feel very comfortable actually giving them resources around our state that they can connect to. Where you draw that line, I think is that ... we have clear guidance on what we can and can't do, again with federal funds. Where you draw that line of this is what I can do or can't do within a system like the VA where we can't do it, it's gray, right? But I feel, for me and teaching others, that it's really important not just to say, "Sorry, we don't do physician aid in dying, talk to somebody else." But to be very clear is, "Thank you for bringing this up. I'd really like ..." How did you start thinking about this? Where is this coming from? Why now? All these great questions like you and Lynn were talking about. Inquiry.

Alex: Exploring.

Eric: Exploring. And then potentially addressing some of the issues that come up, whether it be around loss of control, or depression, or pain.

Alex: Which is a point that you bring up Bernie, in your article in a couple of different areas. First, at the time of the initial question and exploring, you highly recommend making sure that you're treating all reversible sources of suffering, including comprehensive palliative care, noting that 46% of patients who have requested physician aid in dying change their minds. And then second, after somebody's written the prescription, that doesn't mean you stop treating sources of suffering, but in fact that you try to help this person find other reasons to live, and that many patients who obtained the prescription do not actually use it.

Bernie: Right. That's right. And what I try to say, and maybe it's worth repeating it, even physicians who are morally opposed to let's call it aid in dying, that's what the California law calls it. My argument is they should do that exploration, talking to people, and really doing the most intense, successful palliative care they can. Even though they and the patient know that there's a real difference of opinion with regard to the aid in dying. If I can double back, is that okay to go back?

Eric: Sure, absolutely.

Bernie: To the issue that Eric and Lynn, you were talking about. So I don't want to make this a VA centric or certainly not put either of you on the spot. But I think in any institution, institutional policies may or may not constrain what physicians can do or feel comfortable doing. And Eric you brought out the between what you're expressly told not to do, and what you're expressly told but is okay, there's a gray zone. And where in that gray zone will you be? I think it's really important for each of us to think that through so that hospices have different policies regarding participation in aid in dying. So institutions, like UCSF or hospital or clinic that you would work in.

So I think it's important to think this through, and I think in a lot of other contexts, we are not shy about referring people outside the system so that now my practice is UCSF, for a lot of reasons tend to refer everyone to UCSF specialists. But if that's not working out, then I will ... and particularly if the patient expresses real unhappiness with the way a couple of referrals have gone, I will refer outside the system and say, "Well, I don't know what your insurance covers. I don't know these people as well, there's a little problem getting the records back and forth, but either it's closer to your home or they can give you a different opinion." So I think feeling comfortable saying the way we do it within our system is not necessarily the only way to do it, and for a given patient they may want to at least think about if they want to, the option of going outside the system.

Alex: I wanted to come back to a topic that you raised before about the way you go about prescribing may differ within health systems and what you prescribe and formulations. If you're allowed to within that system. And as you note in here, barbiturates are one of the mainstays of physician aid in dying, and they've become really difficult to obtain and in some cases prohibitively expensive. And my understanding is that those who prescribe these medications frequently, the physician aid in dying medicines frequently, are actually in some ways they're trying to come up with creative new uses of existing medications to help their patients die quickly and without suffering.

And it raises, for me, I wonder if you see some issues here of the clinical and research ethics interface. I worry that there is very little to no oversight over these practitioners who are trying new formulations with patients. If we had say a cancer trial with some new drug, we would be up in arms if there was no oversight about was informed consent obtained. How much did they actually understand about this new treatment that you're trying and the potential risks and side effects, etc.? And on the other hand, I also feel for those providers, because there is no mechanism to support research in this area. There is no mechanism to provide oversight that I'm aware of, maybe you're aware of mechanisms, to provide a research infrastructure for these practitioners.

Bernie: Great questions. So let me try and distinguish between oversight and evidence. If you start with the assumption that barbiturates may be prohibitively expensive and very hard to get-

Eric: Wait. Before we talk about prohibitively expensive, we're looking at $5,000 to $6,000? Is that about right?

Bernie: Yeah.

Eric: So like three days in the ICU. Two days.

Alex: Right, but they're paying for this out of their pocket. Out of pocket costs. They're not paying for that ICU stay in almost all cases.

Bernie: So there's actually not very much evidence on the older regimens that included barbiturates. And it's the Dutch who have done this. They have collected the best evidence on what are the adverse effects, how often does it work? And just parenthetically, one of the main reasons that physician assisted suicide is not that common in the Netherlands, although it's legal, they use active euthanasia, because they've had documentation of really disturbing adverse events from oral ingesting of medicines.

So there are people who have been trying to devise regimens that are effective, that are tolerated, that are affordable, and presumably are safe. So it’s an evidence issue, and I would differ a little with you Alex, in that I'm not sure it's actual formal research that meets IRB approval and the like, but it's really innovative practice, but there needs to be a systematic collection of what works, what doesn't, what happened. So I think what I would like to see is the doctors that are doing this a lot, and hats off to those who do it, it's very hard work. It's emotionally grueling, it's time consuming. My impression is that patients and families really appreciate what they do, that they keep a register of what was prescribed, how it worked, any adverse effects, so that people can later on say, well in a consecutive series of people using regimen X, this is what happened, and if it gets modified to regimen Y, this is what happens.

But I think the idea that things are intuitively gonna work is good, but you need to see in practice like can people take all the pills? Will they keep them all down? Those are things that are real practical.

Alex: And there are some people who have terminal illnesses, illnesses that will eventually end their lives, who do not fit in to this physician aid in dying. For example, I think of people who have amyotrophic lateral sclerosis, right? ALS, a motor neuron disease who will not be able to take the pill themselves because they are not physically able to do it, though they are of sound mind.

Eric: And anybody with dementia who may not have the capacity.

Alex: And who's cognitively not able.

Lynn: I was gonna give an example, I spoke at an Alzheimer's Association conference last year, and I was asked to sit on a panel there and talk about physician aid in dying, and a few months ahead I said what's the point in this group? Nobody here can access it. And this was a community facing conference, so lots of caregivers and family members, and I have never sat on a panel with such anger and emotion at the idea that people couldn't access this on behalf of their loved ones. It's pretty fascinating.

Bernie: Yeah, the laws in California, Oregon, and the other seven states and the District of Columbia are pretty narrow. It's terminally ill patients who are competent, not depressed, all that. But if you allow it for those cases, you brought up examples where logically it makes sense to extend it. So the person with ALS, who is mentally clear, but physically unable to ingest the medicine. It seems to me that, logically, that doesn't seem to be either consistent or fair, and you can certainly think of ways of devising robotic assistance to place the pill in someone's mouth on a voice command or something, but it seems like a lot of trouble for the same effect.

Eric: Because we're kind of skirting around this physician aid in dying versus euthanasia issue, right?

Bernie: So the ALS example, I would say it's still done at the command or voluntary decision by the patient. They are saying the time has come, I want someone to put the pill in my mouth. Or put it in my feeding tube. The Alzheimer's is different, because there presumably the patient is no longer saying this is exactly the situation, I didn't want to be in. Now's the time to stop, we’ve all come and said goodbye, I love you, thank you. So it's someone else saying this is what the patient would have wanted in this situation. That one step removed from the direct request or decision by the patient leaves it a little bit shakier, but logically I can see why people in that audience in your panel at that meeting Lynn were saying, "This doesn't make any sense. This is exactly, by the time she is sick enough to be in a position that she dreaded, you're saying she can't take the medicine, we can't administer this."

Lynn: Yeah, so the other thing I was thinking about in terms of the ALS example, and actually in general, correct me if I'm wrong, but once people obtain a prescription it's there, in their home. And they may be in a hospice agency or have some sort of institutional support, but they may not, and so we don't exactly always know how this ends up being administered in the moment?

Bernie: No, we don't. And frankly that's one reason someone suggested that a physician or a hospice nurse should be present. There are a whole lot of reasons, but one is to make sure there is, at least in states like California that's a voluntary choice. Not someone else administering. And if it were ever to get to the point, in the Netherlands, doctors make house calls to carry out either physician assisted suicide or active euthanasia. And it's done by GPs usually, not necessarily by specialists, and they make it part of their job. And it does give some assurance that what was done was ethically appropriate. Although then, there were also some problems with what actually was done in some cases.

Eric: So Bernie, last question. Do you have guidance for clinicians who are listening right now? Maybe three things that we should be actively thinking about or doing to prepare us for these ethical dilemmas around physician aid in dying?

Bernie: Let me try. So first is to the extent possible, treat this like any other new intervention that you're likely to see in practice. Anticipate what might happen. Think about it, try and read about it to the extent you can, talk to your colleagues about it who have maybe had some experience. Because I think more than a new device or new medication, it's important to sort of think this through in advance. Because a couple of you had said when something comes up, you can almost feel like a clutch, what's going on here? What am I gonna do? So I think that's important.

Okay, so my second point is, this is hard. It should be hard. And I think we all need to appreciate that. For all the reasons we've talked about, it's complicated, there's a lot of uncertainty, it's a lot of individualization. And I think you have to be willing to say this is gonna take time, emotional energy, and a lot of digging into yourself to say how much time am I gonna spend on this, and what do I ultimately feel comfortable doing, and where would I draw the line saying I'll support my patient up to this but not farther than that.

And third I guess is a corollary almost of two. Talk to people about this. Your partner, your spouse, your practice partners. It's really important that you not think that you're the only one going through this, or you have to work this all out yourself because the people I've talked to and practice who have faced this, and tended to face it alone because if you're outside an institution, the whole pace of things is different, it's really grueling on people and it's almost like what's the hardest emotional sub specialty? Maybe pediatric oncology? That you need to be able to re equilibrate. But part of that is, patients or families who will tell you, "We so appreciate you talking about this." You're spending the time. You're taking this seriously, you're engaging on a not just no I won't or yes I will, but really could see you trying your hardest.

That's so important to families, to patients. And that is to compensation for all the hard work and energy we put in. I think the other thing I would want to say is that you want to try and apply the same critical thinking and evidence based medicine skills, and to admit when we really don't know. I would always say to people, "Every medicine has its adverse effects, and we don't know what all of them are. This may not work, there may be side effects." I've had people say they want to be in charge of how and when they die. I need to say we can't guarantee that, because we can't guarantee anything in medicine.

Eric: Well it's interesting though, it feels like this is even more of a black box. It's kind of hidden from sight, at least like with we have people who can see what's happening after insulin. We have people researching that, but this is doctors are often not there, it happens in people's homes, and there's very little follow up.

Bernie: That's right, and I think and I'm willing to say, just a consecutive case series would be useful with standardized information on each case. There's some of that that's done in the state of Oregon and Washington have the best annual reports. They'll talk about adverse effects, but they don't specify what the regimen was. And so you can't crosswalk it to drugs and dosages, which of course doesn't help.

Eric: Well Bernie, I really wanna thank you for joining us today.

Alex: Thank you so much, Bernie.

Lynn: Thank you.

Bernie: Yeah, no thank you for inviting me. Great questions, I enjoyed the back and forth.

Alex: Incredibly thoughtful responses.

Eric: Incredibly thoughtful. I always learn a ton just listening to you.

Alex: I know I always learn so much.

Eric: Before we end Alex, I wanna end this on a high note with maybe a little bit more of The Beatles.

Alex: Another verse of Help. [Singing]

Eric: Well I wanna thank all of our listeners too, for joining us on this GeriPal podcast. We look forward to our next podcast next week.

Alex: Thanks, Bernie.

Lynn: Thank you.

Bernie: Thanks Alex, and Eric, and Lynn. It was a pleasure.



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