Friday, May 25, 2018

Top 5 Resources for Studying for the Hospice and Palliative Medicine Board Exams

We have started to get a lot of questions about how best to study for the 2018 Hospice and Palliative Medicine Board Exam.  Yes, that one that many of us took a little less than 10 years ago and now it’s coming due.  Or the one that you need to take after completing your fellowship this year.  

So, to help answer these question, we at Pallimed and GeriPal have created a quick guide of the top 5 resources we use to prep for the boards:
  1. AAHPM's Intensive Board Review Course: the ultimate live in-person prep that includes a pretty stellar cast of speakers including Mary Lynn McPherson, Kim Curseen, Sandra Sanchez-Reilly, Joe Shega, Drew Rosielle, Michelle Weckman, Scott Schwantes, Janet Bull, Jeff Spiess, and Gregg VandeKieft.   The course takes place this August 9-11, 2018 in Minneapolis, MN, and will include both lecture based content plus lots of exam-type questions to help you pass the test (and brush up on your hospice and palliative care knowledge).  Plus you get to hang out with a bunch of cool palliative care colleagues.  
  2. The Pallimed/GeriPal Blogs to Boards Questions: yes, it's slightly dated but hey, so are the exam questions (it takes a couple years for the exam questions to get into real life circulation).   Plus, the great thing about these questions is that we can update them on the fly.  So if you notice a question or answer that needs updating, send the edits our way and we will make the changes.
  3. Essential Practices in Hospice and Palliative Medicine:  For those who've been in the field for a while, you may remember the book series called "UNIPAC".  This was our go to resource when studying for the boards 10 years ago, and remains so today, just with a different name.   It's a comprehensive 9-volume self-study tool that has been completely updated for its rebranded "Essentials" name.  Plus it comes with an online confidence-based learning module to test your level of knowledge and level of confidence in each topic area presented in the book series.
  4. Fast Facts: a great, free resource for a quick how to for over 350 palliative care issues.  
  5. HPM PASS:  Need more exam questions.   Get AAHPM's HPM PASS for an additional 150 questions
We would love to hear what other resources you have used and found helpful.  Add them below to the comments section.


The folks at GeriPal and Pallimed
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Monday, May 21, 2018

How do patients decide whether or not to initiate dialysis? An Interview with Keren Ladin

How do patients come to the decision regarding whether or not to initiate dialysis?   Well, that is the question that we talk about with Keren Ladin on this week's podcast.  Keren is a social science researcher, bioethicist, and assistant professor in the department of Occupational Therapy at Tufts.  

What becomes clear when you look at Keren's research is the for many patients, there isn't a decision that is made.  As Keren said in our podcast:
We had asked people all these what we thought were thoughtful questions about, "Can you tell us more about what were the factors that were involved and how did you come to this decision"... and eventually we just got back two different options. One was that it wasn't really a decision at all, that they had felt that they needed to start it or that they would kind of die immediately, or that it wasn't their choice, it was more of their physician's choice, which we thought was also really interesting.
To read more about the articles we discuss, click on the following links:

Listen to GeriPal Podcasts on:


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

Alex: This is Alex Smith.

Eric: Alex, who is our guest today?

Alex: Today we have a guest from Boston on the other side of the country. We have Keren Ladin who is an Assistant Professor. She's in the department of Occupational Therapy at Tufts. She is a social science researcher. She is a Bioethicist. Welcome to the GeriPal podcast, Keren.

Keren: Thanks. Happy to be here.

Eric: So we always start off this podcast with a song request. Have you got a song for Alex?

Keren: Sure. Can you play Weezer's “The Sweater Song”?

Alex: [Singing].

Eric: That's about as much singing as you're ever going to get out of me.

Alex: That's pretty good. We got Eric to sing! That's unusual. He likes the Weezer.

Eric: Again, thanks for joining us, Keren. Before we start talking about some of the work that you've done around dialysis, how did you get interested in this subject?

Keren: That is a good question. I think I got initially interested in dialysis through some of the research that we had done with kidney transplant patients. We had a pretty large study going on with patients who were thinking about transplant and looking at their decision making processes. We spent a lot of time in dialysis centers and just, you know, talked to a bunch of patients, some older patients especially, and learned a little bit about kind of what their process was like. I think really just through spending those hours in the centers and with nephrologists and surgeons, I became really interested in what goes into a decision to initiate dialysis, which is kind of such a life changing therapy.

Alex: Yeah so tell us about these studies that you did. I don't know if it's easier to start with the patient side or with the physician side about this issue of initiating dialysis.

Keren: Yeah. For me it really started with the patient side. I think going into thinking about kind of for people trained in health policy, I think oftentimes what's interesting to us is when there's kind of a very big difference between treatments either between countries or things like that, so there had been a series of papers that had come out looking at treatment of older adults with and without dialysis in the U.K. What was really interesting is that they had kind of a very different kind of baseline for what would qualify for dialysis treatment. Not everybody was referred. It's wasn't kind of inherent that people would just start dialysis. Instead it was this more deliberative decision making process.

So I was interested to see how that would work in the U.S. When we started talking to patients about eight years ago now, what became really clear is that most patients did not experience a decision at all. It really changed the way we decided to study this. We had asked people all these what we thought were thoughtful questions about, "Can you tell us more about what were the factors that were involved and how did you come to this decision," and all of this, and eventually we just got back two different options. One was that it wasn't really a decision at all, that they had felt that they needed to start it or that they would kind of die immediately, or that it wasn't their choice, it was more of their physician's choice, which we thought was also really interesting.

Alex: You have some great, I mean disturbing, quotes here about the patients' perspectives on starting dialysis, and I've kind of underlined a few here. How much autonomy, for example, do the patients feel that they have in making these decisions? "The kidney doctor is the one that said that I should have dialysis." "Lying on the bed three hours a day is not my way of living." "They had a hard time convincing me. I finally did agree." "Sometimes you feel like you don't have a choice." Then, "They said if I didn't do dialysis, I might as well plan my funeral." This is really stark, right? As you were saying earlier, in Europe it does sound like there are choices here, patients may feel more engaged in the process of decision making. They may feel like they have a choice, and there may actually be a choice because there's another option, conservative management. It doesn't sound like these patients feel like they have much of a choice here in the U.S.

Keren: Yeah. I mean I think that it was really striking to us as well, and hearing these patients and hearing them kind of recount their narratives that they really felt very strongly that they didn't have a hand and that they really didn't have a decision point, kind of to the extent that they were surprised or confused about even the question, about, "What else would I have done?" To us, I think from a policy perspective, especially it's really important because for many of the patients, especially that we were interviewing, they're older patients. They have many comorbidities. It really seemed to be more of a question of dialysis initiation as a quality of life choice as opposed to necessarily increasing longevity, and yet for most patients, they really didn't have any sense that this was an option that would affect their quality of life and that there were others that they could choose from as well.

Alex: Let me just reiterate what you said there. Make sure I understand it. For the patients, it seemed like they were more interested in quality of life concerns, but the physicians were presenting this as an issue of survival and length of life. Does that summarize some of ...

Keren: Yeah.

Alex: Yeah.

Keren: Yeah. That's right. That's right. It wasn't clear to us kind of why that was, why were nephrologists really focused on this, on survival as opposed to quality of life. Is it that they really thought that dialysis was going to prolong the life of these patients in particular, or did they know or were aware of the literature about conservative management? Why did they not engage in these kinds of conversations and why didn't they tell patients more about their prognoses? What was interesting was actually the National Kidney Foundation president, Jeff Barnes said in one of his speeches at the kidney conference a few years ago, he said that patients care about quality of life above all else, but too often health care providers and family members are only focused on mortality. That's really what we found. That really resonated with our patients' experiences.

Alex: And that's a nice bridge to talking about the other paper. Eric, did you have a question?

Eric: Yeah. This other paper that you just got published in American Journal of ... is it Kidney Diseases? AJKD?

Keren: Yeah.

Eric: Discussing conservative management with older patients with CKD, an interview study of nephrologists. What did you learn about the kidney doctors and how they're thinking about this?

Keren: Yeah. It was really interesting. After kind of having these conversations with patients, we came away with the thought that they really were under-informed about their options. Sometimes there's a discrepancy between what patients report and remember and what they were actually told, or what the doctors perceive that they told them. We thought it would be a good idea to interview nephrologists and ask kind of what they were telling patients, older patients who are facing dialysis decisions, as kind of a matter their standard practice.

We interviewed 35 nephrologists from 18 practices across the country. About a third described routinely discussing conservative management with their patients. That's to say two thirds did not do that. We found that there were a lot of barriers in how nephrologists perceive their own role and the potential consequences of describing conservative management to older patients. There was a sense that they were kind of ill-equipped to have these conversations or there was a sense that they didn't want to deprive patients of hope. A strong preference, as we see, kind of in the applied ethics and economic literature towards kind of active treatment options. They were viewing conservative management as no care. Confronting a lot of institutional barriers to offering conservative management.

Eric: Can you describe what those institutional barriers were?

Keren: Yeah. This was true for both academic and community-based practices. There was a lot of concern over time constraints. There was a perception that kind of a discussion of conservative management required more time. You know, you might encounter a lot of pushback or patients shutting down, and providers were not sure how to handle that kind of within the context of their regular visit. There was difficulty with care coordination, especially with social workers or with palliative care or with primary care, and the thought was that if a nephrologist is going to offer conservative management, they really need all these other providers to be on board so that the patient doesn't get mixed signals or isn't kind of started on dialysis emergently. I know that that's a challenge that nephrologists feel. Finally there's a lot of financial incentives for offering dialysis. A number of nephrologists voiced their concerns about not fully understanding the financial model around conservative management and what that looks like and whether it would be supported by their institution.

Alex: That is a key driver right there.

Keren: Yeah.

Alex: You actually sent me a link to this fantastic John Oliver segment. We were just watching a little bit of it again, here.

Eric: We'll have it on our GeriPal post attached to this blog.

Alex: We'll have that link. He goes into the sort of economics that's sort of a major driving force, in particular calling out DaVita, one of the major dialysis companies, about the ways in which they have really designed their business model around maximizing profit for shareholders rather than providing the best care for patients with chronic kidney disease. It's both hilarious and, of course, disturbing as many of John Oliver's segments are. I don't know if you wanted to say anything about that John Oliver sketch.

Keren: Yeah. I mean I think that in the past year or year and a half there's been a lot more attention to this, with John Oliver, who really does, I think, the best job of integrating the funny and kind of dramatic and desperate aspects of this, but also the Boston Globe and many other papers have written about this. I think it is unique in American health care compared to other countries, that a large part, or the vast majority of dialysis care is provided by private companies. There are these kind of competing incentives in terms of providing dialysis and even referral to transplant. I think overall people are optimistic that things are moving in the right direction, it's just that they're moving very slowly. We're hopeful that some of this research can kind of help at least identify some of the levers and mechanisms for change.

Eric: You also discussed in your AJKD article that providers feel some moral distress over this too. Is that right?

Keren: Yeah. What was really interesting to us was, I think in speaking with the patients and hearing about their stories and the really moving narrative that they shared with us, it was hard to see how and why nephrologists would withhold this information. I think in speaking with nephrologists we really understood kind of how deeply divided they are over their role and how difficult it can be for them, both in cases where conservative management should have been offered and followed and a patient gets kind of emergently dialyzed, to pretty devastating consequences, as well as the reverse where they have these longstanding relationships with patients and they offer them conservative management and the patient may feel abandoned or they may feel like the nephrologist is withholding care.

With respect to kind of the moral distress aspect, we did see that many nephrologists who changed their practice, who started offering conservative management more routinely, did it as a result of kind of these very salient encounters or experiences with patients where they remembered that there was this horrible outcome, this patient who was, to quote them, "tortured at the end of life" and that they felt that there had been a better option and that they had wished that they were more vocal at the time. Actually those nephrologists who now routinely offer it and kind of described to us the evolution of their approach, tend to feel better about whether or not their patient chooses conservative management. They feel like they're offering the best standard of care.

Alex: That's terrific. I just want to read a few more of these quotes because they're just so striking and sort of bring home, crystallize these perspectives. Here's one nephrologist who's saying, "I view myself as someone who tries to provide a ray of hope for people who are sick. I've seen enough people who feel so much better after dialysis." They feel like they have to offer it because they have to offer some hope and they don't see conservative management as hope. Here's another quote, "I let her go six months because she didn't really exhibit symptoms. She's like, 'I feel fine.' Then one day she walked in and I said, 'That's enough. I've given you your time and now I think we have to get you into dialysis." Really sort of turning the screws on people who are choosing conservative management. Then finally about prognosis, discussing the tremendous uncertainty in prognosis for patients with chronic kidney disease, "I don't know the answer to prognosis questions. I actually don't address prognosis."

Eric: Is that the same thing you heard from the patient side, is physician unwillingness to discuss prognosis?

Keren: Yeah. For the most part, our work and many others have found that even, as you guys know this really well, even when the prognosis is really dire, patients want to know. Most patients want to know. We certainly heard that from patients that we spoke with. I think part of the difficulty with nephrologists especially here is that they have these really longstanding relationships with the patients and they don't want to injure those relationships in any way. I think, to some degree, they may be optimistic anyway, so we did hear from a lot of nephrologists as kind of like Wobegon effect, “I know that conservative management on average may offer the same survival as dialysis for older patients with comorbidities, but my patients do better than average." We heard that, that was a refrain among many.

Yeah, from patients we did hear that they wanted to know their prognosis, and some of them, to the degree that this wasn't brought up, felt like it wasn't brought up because it wasn't relevant to them. When we asked them, "Did your doctor ever tell you ... Did you talk about advanced care planning? Did you talk about end of life? Did they ever use the word prognosis or talk about how much time you might have left?" They said, "No, that doesn't apply to us. We're obviously not in that stage or our doctor would tell us." That was really difficult to hear.

Alex: You also have this other paper in the Gerontologist titled, "End of Life Care? I'm Not Going to Worry About That Yet.", that's a quote, “Health Literacy Gaps and End of Life Planning Among Elderly Dialysis Patients.” In this study you found that, you know, as we know, very high risk for mortality with dialysis. With chronic kidney disease, as John Oliver noted, is the ninth leading cause of death, and I'm sure it's a comorbid illness for many other causes of death. Yet despite that, only 13% of patients that you studied here in these 31 elderly dialysis patients had discussed end of life preferences with physicians. You found some serious concerns about health literacy and misunderstandings. Do you want to say a little bit more about what you found there?

Keren: Sure. Yeah. Like I said, very few patients have had any kind of conversation about advanced care planning or about the severity of their illness. What we learned was that there were a lot of misunderstandings even in commonly used terminology that we took from the literature, kind of patient handouts, that the nephrologist offered patients. What was striking to me was actually the word intervention. Oftentimes what we found was that patients didn't realize ... They understood the degree to which they would have to come to the clinic for dialysis, that dialysis might involve needles, but they didn't understand that they might need a surgical procedure to create a fistula and fistula maintenance and all of that.

The nephrologists, when there were describing it, were often using the word intervention. Patients, many of them were actually put off by this word. I think it kind of coincides with reality TV shows about interventions with families. And so many people kind of understood word to be like an intervention. One said to us, "I don't need an intervention. I don't have any problems of that nature." That kind of thing.

Eric: I love the words that we use and recognizing like, "Oh, that's not how most people perceive that."

Alex: Reality check. Right.

Eric: The test was negative.

Alex: Right.

Eric: Oh my God, it's negative. I'm going to die.

Keren: Yeah. That was really an eye opener for us, and we had to think kind of long and hard even about the questions that we were asking. Yeah. I think there needs to be a lot more attention to kind of health literacy around end of life conversations and what are patients walking away with? Are they understanding it?

Eric: It also sounds like from your papers that the patient also feels like they have a role to play and their role is to be the patient, and potentially that is not challenging physicians with some of these things, including discussing prognosis. One of your lines said patients frequently felt shut down by physicians when asking about implications of dialysis for quality of life and prognosis and they didn't feel comfortable initiating these discussions.

Keren: Yeah. That came through. I think what's really interesting is both nephrologists and patients feel really uncomfortable having these conversations and don't feel like it's their role. The patients really did ... I think especially given that it's end of life or last stage of life kind of conversations, it was really troubling and distressing to hear them kind of not feel like they could get an answer or that they could really push on their nephrologist to address their concerns. Yeah. It's troubling.

I think even worse though, one of the things that came out of the patient interviews is that for many patients who chose dialysis, dialysis became their job. They described kind of this new stage of life where they are now trying to be a "good patient". They would talk about kind of what that involved, and that involves coming to all of their dialysis sessions and their follow up visits and their diet and all of these things. When we asked them about their preferences and goals overall, what was important to them in life, there were very limited overlaps in terms of kind of what the patients thought that they wanted to do in their last stage of life and what they actually were doing, in terms of limited social participation and kind of even the symptoms of fatigue and appetite were not really resolved by the dialysis for many of them. Many of them kind of vocalized their desires, especially as they're aging, to travel, which is possible on dialysis, but it's difficult. They kind of wish they would have known that.

Alex: This is terrific. Your work is really sort of granular, grounded in the experience of patients and doctors who are grappling with this in the U.S. Can we take a step back now and look sort of more bigger picture? What do you see as the major things that need to be done in order to change the system, the culture, our approach to these conversations, in order to improve care for older adults who are living with chronic kidney disease?

Keren: That's a very good and big question.

Alex: You don't have to have all the answers.

Eric: In 30 seconds.

Alex: Right. Yeah. In 30 seconds. Right.

Keren: I think if I were to really emphasize two points, I think it would be ... the first is really around transparency of options and presenting all of the available options to patients and really letting them think about which ones align best with their goals. People have different goals, as we all do, but really understanding and presenting these options in a way that patients can understand what the implications are for their day to day lives and their ability to kind of complete their bucket list. I think that's the most important one.

Eric: For that one, do you see a difference between providers who have been doing this for a long time, dialysis providers, versus kidney doctors who just came out of training? Are you seeing culture changing?

Keren: I think we are in general. Not as much as I would hope. I thought that we would see a lot more of that. We see some of it in some of the younger providers that we've talked to. Actually some of these older providers who have been practicing for a while who have reflected on these experiences of moral distress, I think are really the biggest advocates for patient autonomy and decision making. One of my favorite quotes from the paper and from these interviews was this older nephrologist who said, "I have become more respectful of the notion that a few more days or a few more months might be meaningful to people. It hasn't made me more eager to do intrusive and painful things to frail old people, but it makes me feel less guilty and less passionate and less angry when they demand it." I think that's, for people who ultimately choose dialysis against advice, but I think the reverse is also true. That kind of if you think about these salient experiences when things haven't gone right and you realize that maybe you don't have all of the answers and you need to really talk to the patients more about which option best suits them. I think that's where things go best.

Alex: Right.

Keren: Then payment reform. I think that's the other big key. You guys have signaled ...

Eric: What type of payment reform? Do you have an idea of what it could be?

Keren: I think more clearly designating what is involved in conservative management and setting up a payment model for that, which would include multi-disciplinary teams and palliative care, would be really helpful for nephrologists, I think even in just thinking about their approach to older adults.

Alex: Part of the problem there is the nephrologist has to be involved. It seems like there should be pressure brought to bear on sort of both fronts. On the one hand, we need to have options other than dialysis. We need to have a robust system of conservative management. We need to have teams, as you say, providing inter-disciplinary care for people and some sort of mechanism to support that financially. On the other hand, we also need, I think we also probably need pushback on the tremendous money making industry of dialysis in the United States, and that kickbacks to doctors, et cetera, who can just make a tremendous amount of money rounding in these centers. If you still have that tremendous financial incentive to dialyze your patients, I worry that the answer shouldn't just be that we give them ... we'd also give then financial incentive for conservative management. We also need to address the scope of the profit motive in choosing the dialysis option.

Keren: Yeah. I agree with that. I think that's very important to keep in mind kind of as we think about how to shape this option in the future.

Eric: Thanks, Alex. We just lost our sponsor, DaVita.

Alex: Damn it.

Keren: You know, there's room for everyone. I think it's about viewing the patients more holistically. You know, I think these were debates that were happening with dialysis companies a while back with respect to referral to transplant. Not to say that that's been perfected, but I think it's improved with CMS' mandate to include transplant education and all of these things. I think that there's hope, but change is needed.

Eric: It also sounds, from a palliative care and geriatrics perspective, there's a lot that we can do on our end. Just looking at what the nephrologists are saying is that they feel like they're alone and they can't do this just by themselves, especially around conservative management. You said many described a need for palliative care consults. I think that's something that we can do better as a field, is actually start working with our colleagues in nephrology to be more involved in these individuals' care.

Keren: Yeah. I totally wholeheartedly support that. I think that would be really helpful. Even just thinking about is dialysis the only way to manage some of these symptoms? A lot of nephrologists kind of describe it as a way to palliate some of the symptoms that patients are feeling, but there must be other ways to do that as well.

Eric: Yeah. It's fascinating too. Some of the symptoms may actually not be improved with dialysis or their function may not be improved, especially in older nursing home patients. A good study on actually function doesn't significantly improve post-dialysis.

Alex: Right. [crosstalk, 00:30:40]. From Stanford. Nice New England Journal paper.

Keren: Yeah.

Alex: We should wrap it up. Is there anything else you wanted to say today?

Keren: No. I think that this is a ripe area for a lot of good collaborative work: palliative care, geriatrics, nephrology, social work. It's a growing population in need, so I'm glad to see a lot of good work in this area.

Eric: What's next for you?

Keren: What's next for me? Summer vacation. We're starting actually, we have a large multi-site trial, the decision aid, a patient facing decision aid geared towards older adults to help them navigate these choices. We are in our, let's see, second or third month of this three year trial. We're hoping to see if we can help patients and their care partners choose options that better align with their values and their preferences.

Eric: That's great.

Keren: Yeah.

Eric: Is that decision aid available? Probably not yet, right? After the study?

Keren: Yeah. It's in the last stages, but it will be available on our lab website. I'll send it to you guys. Also, from the National Kidney Foundation.

Alex: Terrific.

Eric: Wonderful. Thank you again for joining us.

Alex: Thank you so much, Keren.

Eric: Alex, do you want to send us off with more of a song?

Alex: Yes, if you join me for part of this. [Singing].

Alex: Yeah. There we go.

Eric: Well, I want to thank all of our listeners. We will look forward to seeing you next week.

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Wednesday, May 16, 2018

Melissa Wachterman Podcast: Dialysis and Hospice

This is the first in a two part series on Geriatrics, Palliative Care, and Chronic Kidney Disease.

One of our most popular GeriPal posts ever is titled, "Dying without Dialysis".  That post discusses an article on the symptomatic experience of persons who decided not initiate dialysis in the setting of advanced kidney disease.

This is obviously a compelling topic, given the high prevalence of kidney disease among older adults.

Medicare policy that poses tremendous barriers to continuing dialysis while enrolling in hospice.  This sets up an either-or dichotomy that leads to low rates of hospice use, and among those who use hospice, lengths of stay that are frequently 3 days or fewer.

This week, Eric and I talked with Melissa Wachterman, a physician researcher from the Dana Farber Cancer Institute and Harvard Medical School.  Melissa used a national dataset of people receiving hemodialysis linked to Medicare claims for older adults who died.  She found:

  • 20% used hospice (compared to 48% hospice use among all Medicare decedents)
  • Of those who used hospice, 42% used hospice for 3 days or fewer.
This is a complex issue, with not only the structural policy barriers, but also major communication issues, including lack of prognostic discussion and honesty.  


-by Alex Smith, @AlexSmithMD

Listen to GeriPal Podcasts on:


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

Alex: This is Alex Smith.

Eric: And Alex, who is our guest today?

Alex: Today we have Melissa Wachterman, who is at the Dana-Farber Cancer Institute and VA Boston and the Brigham Women's Hospital, where she is a palliative medicine clinician and researcher. Welcome to the Geripal podcast, Melissa.

Melissa: Great. Thanks for inviting me.

Eric: We start off with every podcast with a song request. Do you have a song request for Alex?

Melissa: Yeah, “Running Down a Dream”, by the recently deceased Tom Petty.

Alex: And you saw him in concert a little bit before he died, isn't that right?

Melissa: I did. He was rockin' out. I'm not quite sure. I mean I guess I did hear what happened but we won't go into that. But, yeah. No, it was like end of July he was totally rockin' out and then saw the obituary like a month later.

Alex: It was very sudden. Yeah. Here we go. [Singing]

Melissa: Wow. Wow. Channeling the great. Impressive.

Alex: Tom Petty's fun.

Eric: So we're going to be talking about your article about the association between hospice length of stay, healthcare utilization and Medicare costs at the end of life among patients receiving maintenance hemodialysis that was published in JAMA IM this last month. Maybe before we go into the details of the article, can you tell us how you got interested in this subject?

Melissa: I've been studying patients with end stage renal disease for a while now and one of the things that's been sort of loud and clear in this population is that they are sort of really sick and they really, their quality of life near the end of life isn't great, so I feel like there's a lot of room for us to improve things. Another thing that we found is that they don't use hospice a lot. I think that what wasn't as clear was, okay, so those that actually do get to hospice, sort of what are the differences? What are things like for them? The main driver question that I was really interested in is how long are they in hospice?

Alex: Yeah. Do you have any personal clinical experiences with this issue that you could, in an anonymized fashion, relate to our audience, so that it's HIPAA compliant?

Melissa: Yeah. Sure. Sure. Yeah. I ... Another piece that I have been studying is decision making about dialysis initiation. I, sort of pulling it into a patient I actually on wearing the hat of a medicine attending ... I do palliative care attending but also medicine attending and I was wearing the medicine attending hat and we had a patient who was a relatively young, functional guy, a veteran, who actually had advanced liver disease. Really advanced liver disease, to the point that he had hepatorenal syndrome from his end stage liver disease, but it was pretty sudden onset.

As I say, he was a functional guy up until that point, or relatively so, and it became clear that time was short, clearly. He had hepatorenal syndrome but that dialysis probably would buy him a little more time at the point in which we were meeting him in the hospital. He lived at a distance and really, really wanted to get closer to home. He was six or seven hours from home. So then the question came up, "Okay, so are we going to do dialysis or not?" It was one of these things just thinking about decision making when you're wearing the attending hat compared to the palliative care attending hat. It can feel kind of different in terms of basically I felt like in goals and values and the palliative care doctors were doing more in depth analysis that doing dialysis probably did make sense for him with the goal of getting home. So then it became, ok how are we going to help support this guy who has a very poor prognosis? To me, it was just a no brainer. Send this guy with hospice, potentially he may need inpatient hospice but he'll be so much closer to home. But then there hits the policy barrier that as long as he's going to get dialysis he can't get hospice.

Alex: Yeah.

Melissa: And so it actually was, while I was writing this paper was when it came up. Yeah.

Eric: So, maybe a little bit of background, just because this gets into a complicated, thorny issue around dialysis and hospice. What is, what can be done in hospice with dialysis?

Melissa: Right. If your hospice diagnosis is end stage renal disease, you cannot get hospice until you stop dialysis.

Eric: And that's because, not because Medicare says you can't do it, but just that Medicare won't fund or pay for dialysis anymore.

Melissa: Right.

Eric: So that's the hospice's responsibility and hospices would go broke if they were paying for dialysis in their patients. Is that right?

Melissa: Yes. That is basically right. I think that there are some people that just do you qualify for this diagnosis of end stage renal disease? Even just a qualifying for hospice under that Medicare diagnosis. I think it can be a little fudgy in terms of, because there's always two issues. Do you qualify for, do you have a hospice diagnosis, and then exactly what will Medicare cover?

Eric: Do you mean that from a prognostic standpoint, like figuring out somebody who's on maintenance dialysis, are they hospice eligible with a prognosis of less than six months?

Melissa: Well, right. That's where I think the data is very clear, that there are a lot of patients on dialysis who have a prognosis of less than six months. Hands down, no question. That's where I feel that there's a little bit of a bias that people, and I think this gets at some other issues around just people on dialysis, doctors, like, "Oh, well, this is dialysis. That takes care of my kidneys. I'm good to go." I think that some other work that we've done in the past that patients often have a much more optimistic picture of prognosis than they actually do. I do think that it's not, "Well, as long as you're on dialysis, you're going to live more than six months". Nothing is perfect, but there are prognostic models out there like we can do as good a job as we can in many non-cancer conditions with prognostication. It's not just, "Well, we can't find these people". We can identify the people who are at high risk for dying in six months.

Alex: So, Melissa, in that case that you described, is it possible that a hospice qualifying diagnosis might have been the patient's liver disease and liver failure?

Melissa: Yes. This does come up and this is where I feel like ... right. The way we talked about it being when it's your hospice diagnosis you can't get dialysis and Medicare won't pay for dialysis and hospice together. But, yes, if you qualify under another diagnosis, for example, right, he had end stage liver disease. That's actually a really good point.

Eric: I actually think in that case, because the dialysis is related to hepatorenal syndrome, which is related to his liver disease he would not qualify.

Alex: Interesting.

Eric: He would actually have, and I won't say he won't qualify. He would have to ...

Melissa: Pay. The hospice would have to pay for it.

Eric: Yeah. Hospice would have to for it-

Melissa: Yeah, exactly

Eric: ... because it's related to the terminal illness.

Melissa: That's right.

Alex: It's related. So if your patient had developed, had pre-existing ... If a patient, this would be a completely different patient, had pre-existing need for dialysis due to poorly controlled diabetes and then developed a cancer that was fatal, then that situation, that patient could qualify for hospice under the cancer diagnosis while still receiving dialysis, paid for separately by Medicare, for the long standing end stage renal disease?

Melissa: Yes. That is exactly right. That's exactly right and it's the example I often use is the metastatic cancer one. It feels very arbitrary that in that case, exactly, you could continue to get the dialysis because it's not related to your hospice diagnosis. I do think, and Eric, I think that's great the way the hepatorenal syndrome one really susses out the issues between issue versus a qualification issue and you're exactly right. The patient would qualify, but the hospice would bear the brunt of paying for the dialysis, which you sort of opened with. Hospices just can't stomach that cost with the amount that Medicare pays for per diem hospice.

Alex: So tell us what you did in this study, like succinctly understanding that many of our listeners are clinicians and not researchers.

Melissa: Yep. Essentially, what we were interested in looking at was what proportion of ... We used United States Renal Data System, which essentially includes all patients who have received, who have end stage renal disease, whether they've had a transplant, or been on any form of dialysis and so we looked at this cohort of decedents. These were all patients who had died and we looked back at what proportion of them had received hospice, and then amongst those that had received hospice, how long had they been in hospice. Essentially, we found that only 20% of these patients were receiving hospice services when they died and 42% of them were in hospice for three days or less which, comparing to overall Medicare populations, is about twice the proportion of patients who have these really, really short stays and they're also about half as likely to be in hospice at all.

Alex: So there are kind of two main headlines, if I could just reiterate the two main findings here. The first one is that, what is it, like one in five, 20 what percent?

Melissa: 20%. One in five.

Alex: Yeah. So about one in five patients who are on dialysis enrolled in hospice before death, so just one in five.

Eric: Which is a significant increase from 2000.

Melissa: Yeah, yeah. We did look at some trends over time and sort of similar to what's been going on in the general Medicare populations there's been huge growth for both patients of all different diseases in the use of hospice. What hasn't changed, both for the overall Medicare population and certainly for our population, is there's been kind of this no change in the high proportion of patients who are in hospice for a really short time.

Alex: But I think that one in five may be an important number, too, because to me that seems low. I wonder what overall rates of hospice are, A: for overall Medicare population, people who die who are Medicare eligible, receiving Medicare and then, 2: what the proportions are for people with other serious conditions like cancer? How many people with cancer in Medicare receive hospice prior to death?

Melissa: Yep, yep. The 2014 data, 48% of the Medicare population received hospice prior to death.

Alex: So about half. So you're talking about one in five versus half. These people-

Melissa: One in five versus one half, yeah.

Alex: Yeah, that's a huge difference, considering that these people are on dialysis. These are seriously ill individuals. That means that there's some sort of barrier there. There may be many factors in that barrier, but one of them is likely this issue about Medicare not providing a mechanism that's feasible for funding both hospice and dialysis at the same time.

Melissa: That's right. I do think it's important the point you make there. I think that the policy is just one factor. I think there's a lot of reasons why patients with end stage renal disease are less likely to use hospice than patients with other diagnoses, so I don't know that if we all of a sudden changed the policy that all of a sudden we'd have comparable numbers or comparable proportion of patients with end stage renal disease.

Eric: So what do you think the other factors are?

Melissa: I think there's a number of factors. I think patients often, with end stage renal disease, don't have a sense of how sick they are. In other research that we've done we asked, "What do you think the chances are you'll be alive in a year?" The majority of them said, "Oh, over 90%." So I think that there's this perception that, "Oh, well, I'm on dialysis. There's a machine that takes care of my kidneys. That's my issue, so I think I'm good to go." I think in part that is, as clinicians, I think we're not having conversations about prognosis. I think that ... Yeah.

Alex: Are the nephrologists having those conversations?

Melissa: Right. They're not. They're not. So in that same study, we found that asking patients, "Has your doctor talked to you about this?" less than 5% of patients had had conversations about their individual prognosis. Their doctor had not shared an estimate of prognosis with them. Nephrologists are pretty open about this as well, that they aren't talking about it and, interestingly as well, when you ask them, "If a family asked you for an estimate for themselves?" nephrologists don't feel comfortable sharing.

Alex: I want to go back to the other key finding from your paper, which is that only one in five used hospice, A, but then when they did use hospice, they tended, a substantial group of them used hospice for a very short period of time.

Eric: Nearly half. 41%, 42%.

Alex: 41% for less than, three days or less?

Melissa: That's right. That's right.

Alex: That probably also is driven, I think you're assuming here, by people stopping dialysis very close to death, then starting on the hospice benefit. Is that the kind of driver, or what are the other factors that lead to that?

Melissa: I think that's right. I think it's both policy and also models of care. I think patients that are on dialysis, they get wrapped up in a very high treatment intensity when you look at other measures like the intensive care unit. They're a group that has really high health care utilization and I think that they're, often they kind of, my sense is, not being a nephrologist, but having spent some time with colleagues that are nephrologists and spending time in dialysis units, it's like there's kind of this culture that's very aggressive and then it's kind of until there's something else, a medical crisis, almost like they're dying from something else. At that point it's kind of the first time that things change in terms of treatment intensity.

Eric: I think the other things is, especially if ... First of all, you did not include those people who started dialysis in the hospital in the ICU for a couple days and stopped, right?

Melissa: Right. These were all patients who had made it into the USRDS and in order to be in that registry, you have to have received dialysis in an outpatient setting.

Eric: Okay. The other question is for these people who've been in maintenance dialysis in the outpatient setting, one of the things that we've seen here is that the dialysis unit becomes their family, becomes their social network in a way. They don't view dialysis as sometimes a medical intervention but as, "Oh, it's a thing that I come to on Monday, Wednesdays and Fridays and I meet my dialysis nurses and I talk to the other dialysis patients". So I just wonder how much is that playing a role?

Melissa: No, I think we often think of dialysis, initiating dialysis, as the worst thing in the world for somebody's quality of life, but as you sort of allude to, there's definitely stories, patients I've seen who are socially isolated and they start dialysis and it's actually sort of a form of socialization, a community, so I think that sometimes, yeah, there's ... I don't know. Kind of stopping there, but-

Alex: That's one of the factors. But here's another suggestion, Melissa. I'm interested in your thoughts on whether this is a factor.

Melissa: Yeah.

Alex: The decision to initiate dialysis, for some patients, may be a marker of underlying values and preferences that dialysis is a life sustaining intervention. If they've selected that once, might they be selecting that at multiple stages along the line and so might just by looking at people who are receiving dialysis, examining a group of people who have underlying values and preferences aligned with receiving life sustaining treatment that may ... Eric's looking at me like, "Where are you going with this?"

Eric: No. I like this. It's like a marker of the goals and values, right?

Alex: Yeah, marker of goals and values that may not align with hospice for some of those folks in some situations, right?

Melissa: Yeah. In the United States, the vast majority of people do start dialysis, so I don't think that we are selecting for, "Oh, these are the kinds of people who would do absolutely anything to stay alive."

Alex: And that's because we don't have a good alternative at this time of like what is supportive care without dialysis?

Melissa: That's right. That's right. I think that is true and there's really good people working on building models of care. I do think that even with solid supportive care in place, there's going to be a really large group of people who their goals and values, they want to take a crack at dialysis and they are also frail and likely to die in six months and that it's not always inconsistent to start dialysis.

Alex: Okay. I have a follow up. Here's another idea. Maybe because dialysis is pretty much the only option, we don't have a good supportive care system in place for people who have end stage renal disease or whatever we're calling it now, chronic kidney disease, that by starting dialysis and offering it as the only option we train people that when you have an organ that is failing, we have a life sustaining procedure for it. And we train people, in a sense, to sort of indoctrinate them into this, there is a problem, we can fix it with our technology sort of mindset so that we are transferring some of those goals and values of our technology driven Western system to those patients. Eh?

Melissa: I think there's definitely some truth to that. I do think that there can be an on/off switch, like, "Okay, you've bought into this, you have bought into it all" when you think about something like code status and dialysis. There's a qualitative study, a very illustrative quote about a dialysis nurse who was like, "There should be no such thing as DNR, DNI in a dialysis unit. They've signed up for wanting to live, so they can't make ..." I can't remember exactly the quote, but essentially.

Eric: It's like the post-op setting and the covenant that surgeons feel that patients go into.

Alex: Right. Gretchen Schwarze wrote about this.

Eric: Yeah.

Alex: Yeah. The covenant between surgeons and patients.

Eric: Yeah, you've elected the surgery, you're going to elect really a lot of aggressive interventions post-surgery too, even though that's not discussed.

Melissa: Right, right. But I don't think the answer is just, "Well, you ..." Because I think we're kind of doing the same thing if we tell people, "Okay, if you don't want those things, then you don't want dialysis. You want conservative care, supportive care". Because I do think there's going to be people in that zone where they want to do at least a trial of dialysis, but if things do not go, sort of hoping for the best but not getting on the train to ride on for aggressive care till the last stop when things don't go well.

Eric: What else did you find in your paper?

Melissa: We also looked at the Medicare costs for patients with different length of stay in hospice and found that with longer length of stay in hospice, Medicare costs were lower and that these really short stays of three days or less were actually more expensive than not having hospice at all.

Eric: Oh, wow.

Melissa: So that was another.

Eric: So having a length of stay in hospice less than three days actually costs Medicare more money than if they didn't elect hospice at all.

Melissa: That's right. That's right.

Eric: So what's the answer here? What do we do with this?

Melissa: I think that we need to come up with more flexible models of care and this isn't for patients with end stage renal disease and we've spoken about some of that in terms of having a better supportive care track available, but I don't think that's the end. I think we also need to have more flexible models of care for patients who are going to do dialysis or at least a trial of dialysis. What does a time limited trial look like? It's thrown around a lot in the nephrology community in sort of, "Oh, time limited trials". But what are those and what are the benchmarks that we're using in terms of circling back to whether continuing dialysis makes sense? And then, for those that are going to continue on with dialysis, how do we think about transitions when things aren't going as well and breaking down this on/off switch around interventions? I do think that we hope that our ... We do hope that it would inform a policy discussion about the potential idea of concurrent care of not making these patients make the terrible choice between continuing dialysis and getting access to what we know is a package of services with hospice that has a lot of benefit for patients and families in terms of improving quality of life.

Eric: Do you think that needs to be done through hospice, or are there other mechanisms like palliative care consult inpatient/outpatient, potentially in this population outpatient integrated in dialysis clinics? Do you think that's a potential solution?

Melissa: Absolutely. Palliative care is absolutely critical in its ability to meet these patients upstream of these sort of end of life ... Palliative care is available to patients with advanced serious illness at all stages of disease and I think that early integration of palliative care is a big piece of this.

Eric: So you actually did a paper about this in JAMA IM, looking at palliative care, whether or not in different diseases people received palliative care in veteran populations and then associated that with things like quality of end of life care. Can you, do you remember that and can you tell us a little bit more?

Melissa: I do. I do remember it, yeah.

Eric: Just making sure.

Eric: Alex one time wrote a paper and then took a boards exam question-

Melissa: And missed his question?

Eric: He got the question wrong and they cited his paper.

Alex: Oops.

Melissa: I don't have enough papers to be able to have that happen to me, but-

Eric: Sorry, Alex, for outing you.

Melissa: Essentially, in that paper we looked at patients with different serious illnesses and looked at the rates of palliative care consultation and other sort of markers of high and low quality of care. This VA study, the Bereaved Family Survey, is a really rich study because it asks family members about how would you rate the overall care that your loved one received? They ask a lot of other questions, too, but that particular question we saw that patients with organ failure both had much lower rates of palliative care consultation and also lower rates of their family members reporting the care was excellent and when you looked at that association between diagnosis and rated quality of care, once you factored in palliative care consultation, the differences were gone, so making the argument that palliative care consultation can really improve quality of end of life care.

Eric: That's great. Well, before we go-

Melissa: I was just going to say, on the palliative care front, I feel like a really important message for clinicians is while there is this barrier to accessing hospice, that barrier does not exist for palliative care, so it's definitely, if our paper does nothing else than to raise awareness about this patient population, I do think that palliative care involvement is critical and that there is not a policy barrier to that. That said, I do think that there is added benefit of having hospice services as things start to get worse, but not necessarily having to wait until they stop dialysis. Service that's available to people literally in the last days of life, so I do think the added benefit being that access 24 hours a day to a nurse, the bereavement services, there are things that hospice is added benefit beyond just palliative care.

Eric: I really want to thank you for joining us on this podcast.

Alex: Thank you, Melissa. Appreciate you joining us. This was fun.

Eric: It's great chatting with you. Maybe to end us, Alex, can you give us a little bit more of that song?

Alex: Little bit more of “Running Down a Dream” by Tom Petty.

Melissa: Yeah.

Alex: [Singing]

Eric: Nice.

Alex: So, anything else you want to say, Melissa?

Melissa: I do feel like for this population, essentially we're asking them to make a decision to stop dialysis in order to get hospice. We think about cancer patients as a population, we're often talking about hospice and essentially, as people die within days to a week after stopping dialysis, it would be like saying that patients with cancer can't get hospice until they stop taking any oral fluid. I think that it's kind of stark in terms of, "Well, we're not going to give these services until it reaches a certain sort of end point" when, of course, all hospice days could be, we know overall the median length of stay in hospice is relatively short. Everyone could probably benefit from a bit longer stay. I do think that it really, for this particular population, we're really limiting it to the final days of life, which don't think we ... I don't know. It's just, again, it's not treatment, but-

Eric: I think the hard part is it's really not about, nobody's saying they can't do this intervention. It's like the chemotherapy question where it's about financing. Who needs to pay for this intervention, which is really the limiting thing. It makes it, in all practical ways, it's as people can't continue dialysis if it's their terminal illness or related to their terminal illness.

Alex: Right. The financing serves as the barrier.

Melissa: Yeah. Yeah.

Eric: The financing serves as the barrier, but nobody says ... Because we do a lot of disease modifying therapies in hospice, like everything that we do for CHF in hospice like we're continuing their diuretics and it's this old traditional way of thinking, breaking down the body into organs instead of a holistic approach to the person that doesn't make a lot of sense.

Melissa: Right.

Eric: That's probably the thing that we should challenge. It's more about the needs of the person rather than a need of an organ.

Melissa: Totally. Totally agree. Thank you guys. This was really fun.

Alex: Thank you, Melissa. Appreciate you joining us.

Melissa: All right.

Eric: And thank you to all the Geripal listeners out there. We look forward to talking with you next week.

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Thursday, May 10, 2018

Rob Buckman, SPIKES, and How We Break Bad News

I still clearly remember the first time I heard the name Rob Buckman.  It was in fellowship when I was led to his book called "How To Break Bad News: A Guide for Healthcare Professionals" and what became the single most important mnemonic in my career as a medical educator: SPIKES.   SPIKES not only gave me the language to break bad news to my patients, but also gave me a way help learners navigate some of the most difficult communication challenges in medicine.

Now, well over a decade later, I still use SPIKES every time I teach about breaking bad news, but I don't think about Dr. Buckman much.  That changed on my car ride home.   I was gearing up to listen to one of my favorite podcasts, 99% Invisible, and up popped the title of the next episode "Breaking Bad News."  I paused for a second, thinking "what is a podcast about architecture and design doing talking about breaking bad news?"

Well, the podcast was absolutely amazing and I highly recommend listening to it (and sharing it with trainees).  I not only learned about the history of breaking bad news in medicine, I also learned a lot about the life of Rob Buckman.  For example, Dr. Buckman was not only the granddaddy of breaking bad news, he was also a comedian.  Take a look at these two clips of Dr. Buckman (and yes, that is the Monty Python Cheese Shop Sketch with John Cleese):

So, sit back, relax (unless you are driving), and walk down palliative care history lane.  Maybe the next time you give a talk using the SPIKES mnemonic you may break into a British accent and ask for some Wensleydale.

by: Eric Widera (@ewidera)

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Wednesday, May 2, 2018

Communicating with Home Health: Podcast with Cynthia Boyd

In this week's GeriPal podcast we talk with Cynthia Boyd, Professor of Medicine and Geriatrician at Johns Hopkins University School of Medicine about how physicians communicate with home health agencies.

Home health plays a critical role in caring for persons residing at home, and in the best of circumstances extend a seamless network of care from the primary care physician's office to the home.  

Sadly, reality is not so rosy.  

The major form of communication between physicians and home health nurses is, well, a form.  CMS Form 485 to be specific.  

In a recent study published in Annals of Internal Medicine, Dr. Boyd revealed that most primary clinicians barely read what the home health nurses write on the form, don't find the form useful, and rarely does it change management.  

It's the 21st century people.  Can we move beyond lame forms and communicate with each other, perhaps using some modern technology?  Or even 20th century technology, such as phones, if not 21st Century technology, such as video chats?  

Listen or read more to learn more.  Enjoy!

By: AlexSmith, @AlexSmithMD

Listen to GeriPal Podcasts on:


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

Alex:: This is Alex Smith.

Eric: And Alex who do we have with us today?

Alex: Today we have an extra special guest.

Eric: Extra special.

Alex: Today we have Cynthia Boyd who is Professor of Medicine and a Geriatrician at Johns Hopkins. Welcome to the GeriPal podcast Cynthia.

Cynthia: Thank you so much, I'm very happy to do this with you.

Eric: So we're going to be talking about interactions between physicians and skilled home healthcare agencies. In particular how we communicate with them, which tends to be over a form. But we'll get to that. Before we do, Cynthia do you have a song for Alex to sing?

Cynthia: Yes. I would love to hear “The River” by Bruce Springsteen, who is from my home town in New Jersey.

Alex: Oh really? Now that's interesting, I think he may win the award for most requested on the GeriPal podcast.

Eric: I have also heard that New Jerseyans tend to like Bruce Springsteen. There is something there-

Cynthia: Absolutely!

Eric: ... there's a fondness, I think. A mild fondness?

Cynthia: Ya, I’d say so.

Alex: We're just going to do a little taste of it at the beginning, and more at the end. [Singing].

Alex: And more at the end.

Cynthia: Great!

Eric: Why'd you pick that song? Aside from New Jersey, Bruce Springsteen connection?

Cynthia: Well I like just about everything that he sings. But actually where I'm from in New Jersey, there's two rivers on two sides of our town. So, actually, I've always liked the song.

Alex: So we're going to talk about this paper that you recently published in Annals of Internal Medicine titled, “Interactions Between Physicians and Skilled Home Healthcare Agencies in the Certification of Medicare Beneficiaries Plans of Care”.

So Cynthia, tell us how you got interested in this work. Was this the result of your clinical experience?

Cynthia: It was. I and some of my co-authors are primary care physicians in a geriatrics clinic in Baltimore. We pretty frequently refer patients to home healthcare. And we were struck by the fact that there was much more paperwork than there was, sometimes, actual connection with the people who are nurses or physical therapists going into the home. And that this is helped a little bit when the home health agency is in the same system. Which where I work, Johns Hopkins, does have its own home healthcare agency.

But that the forms seemed to take a significant amount of time, but not really be facilitating the meaningful communication that we needed to just actually talk to each other in order to communicate.

We were curious about whether this was a unique experience, or what it was really like for physicians around the country. And we thought, after talking to people informally, that it was an issue around the country. That people struggled with communication back and forth between home health agencies and physicians, and that it was worth understanding that in the hopes of improving it.

Eric: But me and Alex currently just do in-patient palliative care, so we don't have a lot of communication with home health agencies.

But I remember from back when I did out-patient care, filling out these, well not filling them out, signing these forms that I get through like fax. That pile up in my mail folder, never actually looking that closely at it.

Can you describe ... Is that the usual communication? What is the current state of communication between home healthcare providers and physicians?

Cynthia: The forms represent this moment of certification of the plan of care. Which is meant to reflect what the home healthcare agency staff are going to be doing for up to 60 day period in the care of someone who's home bound.

There's definitely other communication that can go on over the course of care, which are for many physicians also sent by fax. And will be signing like a single order, that sometimes can be signed electronically but often are still signed by mail or fax.

One of the things we’re really interested in is, to what extent does this process of certification of the plan of care, facilitate meaningful communication? And a bigger picture question is, how does that relate to communication over the episode of home healthcare, outside of the certification? Which is something that we're actually hoping to study more in the future.

This work was focused on this time where a lot of information is exchanged. The certification of the plan of care, but that there ... our hypothesis was that it didn't help facilitate really meaningful communication.

Eric: And in the paper you describe the CMS form 485, which just sounds like a great title for a form name. Is that what we're talking about? 45 is the re-certification, certification form?

Cynthia: The vast majority of home healthcare agencies use the CMS 485 in order to document the plan of care, because it meets CMS regulatory requirements.

It serves as the primary means of communication, at that point in time then, between the physicians and the skilled home healthcare agency. But they don't technically have to use the 485 form. But because it is a regulatory document that needs to be signed in order for the home healthcare agency to be paid, it's used by the vast majority of home healthcare agencies. And most physicians who know of it, know of it as the 485, which is why we called it that in the survey. But it's not actually a required form.

Alex: What's the worst thing that could happen if communication breaks down between the home health nurse, physical therapist, occupational therapist, speech therapist and the physician?

Cynthia: So people who get home healthcare are either temporarily or permanently home bound. Meaning that it's either impossible or very difficult without the assistance of another person, or unsafe for the person to be leaving their home.

So we're talking about a population that's at high risk of hospitalizations, of death, of adverse events. So it's a population that is in many ways, kind of vulnerable to everything that can go wrong in our healthcare system. In that they're barely sick, and have reasons that they can't leave their home and yet they are home.

Prior work by one of my collaborators, Jennifer Wolff, showed that actually during a home healthcare plan of care, only two-thirds of Medicare patients actually saw a physician for an evaluation and management visit, during the skilled home healthcare episode. Which means a third didn't see anyone.

Communication is really important. And when we think about it from the geriatric perspective, a clinician, a nurse, a physical therapist, occupational therapist, speech, seeing someone in their home is really a window to the context of their lives. How they're managing their illness. If the person was recently discharged, how the transition is going.

So communication, a failure of communication, I think really puts people at greater risk of all of those things we try to avoid.

Eric: So you had this great study in Annals of Internal Medicine. What for me seems like trying to understand what is the current state of communication between physicians and home health agencies, and how are we using the CMS 485 form. Do you want to just describe what you did to help answer that?

Cynthia: Sure, so just to back up a little bit. Skilled home healthcare services may be ordered by physicians for home bound patients who need skilled services provided by nurses or physical or occupational therapists. After admission into skilled home healthcare, a nurse or a physical therapist would develop this plan of care that needs to be certified.

And what we were interested in was physicians perspectives in this survey, about the process of communication and certification of the plan of care.

So this is a nationally representative survey of physicians. We sent a mailed survey to 2000 randomly selected physicians from the AMA Medical Association's physician master file, after basing our selection criteria to try to find physicians who were practicing primary care.

So its important to note that not only primary care physicians sign the 485, but it's definitely a very big proportion of the people who sign it. But for feasibility reasons, we needed to target them. But it is a limitation that we don't have the perspective of a surgeon, say, who sometimes do sign these forms.

So we had an over 50% response rate, and we're really thankful to all of those busy primary care physicians who filled it out. And we sent them a mailed survey which they mailed back to us.

Alex: So what did you find? Did they love the form and they read it every night before bed?

Eric: It was like the most engaging thing ever.

Alex: The form 485 is like framed. It should be framed. Put on a pedestal. The pinnacle of Medicare forms.

Cynthia: Yeah, well so I'll get to what people thought of the form I just a second.

I would say that our main finding was the 485 does not meaningfully engage physicians in the plan of care. With physicians spending very little time reviewing or acting on it, or reaching out to communicate with a nurse or a physical therapist about it.

So just to put that into numbers, about half of doctors spend less than a minute reviewing the 485 as the plan of care. So what does that mean?

These forms are typically 4-5 pages long for those of you who've seen them. They have really small font, and there's a lot of information on them. Part of it includes a list of medications, which is not presented in any particular, clinically meaningful order.

So people spend very little time considering how much information is actually on the form.

Eric: So half of physicians spend less than a minute, and the other half are not telling the truth.

Cynthia: Yes, only about 20-25% of physicians spend more than two minutes looking at the form.

Eric: In my own experience, that kind of rings true when I did out-patient care, this felt like an administrative task. It did not feel like a clinically meaningful task.

I mean it's not just this form, we see a lot of this in medicine, just reading through an EMR on any hospitalized patients. You have these nursing forms that go on for pages that have a ton of information on it. But it’s hard to figure out, is any of this clinically actionable and meaningful? I'm sure there is, but I would say most physicians never read through that. It's not just the 485 form, it's a lot of how we document.

Cynthia: No it’s true. Both the American College of Physicians, as well as CMS, have in recent years been talking about the idea of patients over paperwork, or patients before paperwork.

But how do we make sure that physicians, but also other healthcare professionals, other clinicians, how do we keep people focused on the person in front of them? And have the paperwork in regulation activities that we need to do, not be taking away from that really important interaction. Which is frankly why I think most of us went into medicine, or nursing, or physical therapy, is that personal connection.

Eric: So it sounds like we spend very little time looking at the CMS form. Looking at table one, it also looks like most of us don't have any actionable tasks with it. That we rarely change the orders on the CMS 485, and that we rarely contact healthcare physicians about information on that form. Is that right?

Cynthia: Yes, really overwhelmingly so. Less than 20% of the physicians reported changing anything more than rarely. Almost about 80% said that they never rarely change anything on the form, and about the same amount never rarely contact a skilled home healthcare clinician with a question about the information.

Alex: And how did they rate the usefulness of this form?

Cynthia: So we asked physicians on a scale of one to ten, and they rated the usefulness about a four and a half, with ten having been the most useful.

So not the worst thing ever. But certainly not a mechanism of really good or meaningful communication, or facilitation of understanding what was going on with the patient.

Alex: Now we were talking a moment ago about how there's probably a better way we need to put patients first over forms. And one better way that is kind of obvious is well maybe they should have a call with each other, and talk to each other about the plan of care before completing a form.

And yet it seems from your study that the, I'm looking here, the mean ease of contacting the home health clinician was rated a 4.7 on that same scale out of 10. So it sounds like there are barriers as well, to just getting in touch with them.

Cynthia: Yes, so interestingly on the form, you're not able to tell who is the clinician who is seeing your patient, or even how to reach them. Like, what's the number that most quickly would connect you with someone who's actually involved in the care of the patient.

So I think that's part of why people feel like it’s very hard to reach out, and that is because that information is either not on the form or not easily accessible on the form. Obviously the form includes the name of the agency, but it's not really like a physician to clinician information that's there.

Eric: It sounds like the quality of communication, and relying on this form as a means of communication, just is not working.

Cynthia: Yes, and physicians had some good suggestions for improving the CMS 485. Or highlighting what they really wanted, or needed, to see.

So most physicians wanted to see changes to the existing mechanism of certification, and provided specific suggestions for how we could enhance the clinical usefulness of it. Including, increasing the font. Presenting the orders in terse and clinically useful language for all types off healthcare providers. And importantly, really highlighting what is key clinical information.

Thinking about what do the skilled home healthcare clinicians really want physicians to know, if they were trying to think about how to effectively co-manage this patient while they're in home healthcare.

Alex: This is terrific. So this really gets into so what do we do now? We found this big problem, that this form is inadequate, it’s not useful. Physicians just glance at it and then sign it.

But what is the next step? There's got to be somebody ... I'm sure it’s a really easy process to change this form. There's like one person you can call at CMS and they're just going to like, change the form and accept all your recommendations. It’s not like it has to go through like a million committees or anything like that.

So what are the next steps here in improving care for home bound older adults?

Cynthia: So certainly one is to rethink the purpose, format, and design of the 485, in order to facilitate care coordination for home bound Medicare beneficiaries who are receiving skilled home healthcare. And you're right that that obviously is not necessarily an easy or straightforward task.

Folks have actually been thinking about this before. Eugenia Siegler has developed an EHR embedded 485 that really looks different. So it basically better represents, and gives the physicians an opportunity to directly input with what is going on with their patient. And what they need the home healthcare agency to actually be evaluating and responding to. And then presenting the information back to physicians, and the plan of care that really better matches why the person was getting home healthcare.

Eric: So I got to say I'm skeptical. You know why I'm skeptical? It seems like whenever we try to accomplish both a billing goal, like re-certification things like that, and a clinically meaningful goal; billing always wins over. I mean I think that's the number one reason people don't like EMR's, and sometimes these notes are impossible to read because it's designed around billing. And I just worry that figuring out how to integrate this into an EMR, we're going to fall into that same trap.

Cynthia: Yes, and most physicians still sign the 485 by mail or by fax. But even those that end up signing it electronically, the format, and the information, and what you actually see is every bit as cryptic and hard to unpack and hard to actually gain clinically useful information from. So I think that's a really great point to be raising.

And to me it raises sort of the other possibility of a reaction to this work, is that we need to figure out what are the right ways to facilitate that meaningful communication.

And maybe the 485 should be left similar to the way it is and remain something that is purely regulatory. But that we need to figure out actually how to have that meaningful communication between the folks going into the home, and to the physicians who are in charge of certifying the plan of care.

And those could be face to face, so some physician house call groups have regular meetings with home healthcare agencies. Like if you're really doing a large volume, I think that's obviously a great model. There's nothing like sitting around the table with your fellow interdisciplinary team members, and talking about a patient. But many patients who get skilled home healthcare are not being simultaneously cared for by a physician house call practice.

Eric: And it even sounds like looking at your work that most physicians, or at least half of physicians, are using four or more different home health agencies.

Cynthia: Exactly, so that we need to figure out mechanisms that work for physicians with multiple agencies.

So I think the idea of thinking about getting people on the phone is obviously a really important one. I think if EHR's were really able to talk to each other, and facilitate meaningful communication, you could imagine a short terse, “Here's what's going on with this patient that I want you to know, and react to”. And that physicians could potentially be sending information back electronically, in a way that was much more focused on what's clinically meaningful. But I think all of those things, we need to figure out how to develop and test them.

Alex: You know its 2018, we have these new mechanisms, technology is exploding at a rapid pace. And we can now do things like incredible video conferencing, which we're now doing standard here at work using Zoom. We're talking with you via Skype. Are there ways in ... the home health clinicians are really the eyes and ears of the clinical team inside the home. And it’s such a vital piece of clinical information, understanding what's going on in the home.

We're probably not going to go back to the days of doing house calls although there are more, there's certainly a role for that. But not routinely for all patients. Is there a way of bringing some of that technology into the patients’ home.

Could we have the home health clinician ring up the physician at a scheduled time from the patients’ home? And just sort of go over the plan of care. With the patient there in the background, and so the clinician can actually see into that home and see what's going on.

Cynthia: I love that idea. I think absolutely we need to be thinking about ways to use technology meaningfully, that really enhance the personal connection and focusing on the patient and their family. And not be focused on technology solely for the purposes of billing or regulation.

Eric: So I just realized something, that I acknowledged that I fell into that “less than a minute” physician category. Is CMS going to come after me for fraud or…?

Alex: Oh they're knocking on the door actually ...

Cynthia: Well, I think it’s an awful lot of us. So one of the things we really tried to communicate in this paper is that the answer really should not be more regulation, or more things that actually make the problem worse.

I think that the thinking about this issue is not thinking about what we need to find all those physicians and get them in trouble. But its thinking about how do we get both those physicians, and the home healthcare clinicians, really interacting in meaningful ways. I think that you are so far from alone that I don't think you're going to be…

Eric: Well, I also didn't know you could bill for it. It looks like half of physicians didn’t know that you can actually bill for it who weren't billing for it.

Did the physicians who bill for it do they spend more time? Is the issue just, pay physicians to do this and they'll do it better?

Cynthia: So we did examine the relationship between billing for certification of skilled home healthcare services and physicians’ interaction. And approximately one-third of physicians reported that they usually billed for certification or re-certification after 60 days.

And the people who signed more forms, so more than 30, were more likely to bill than people who did it less frequently. But even among those people who sign a lot of forms, it was still just over 50%.

Physicians who billed for certification were less likely than those who did not, to spend less than a minute reviewing the form. 40% versus 55%.

Eric: So it sounds like, just paying physicians to do this does not do the trick.

Cynthia: I don't think so. I don't think so.

I think that it seems like billing for the process does motivate people to spend a little bit more time. But I don't think we've gotten to what we want, which is that meaningful interaction.

Eric: So what's next for you? Are you going to survey home healthcare providers?

Cynthia: We are actually!

So together with my colleagues, including Bruce Leff, we are going to be surveying home healthcare agencies and the clinicians that work within them.

For that project were actually starting out with a qualitative piece, in part because we really want to make sure we understand all of the issues. And we also are trying to make sure we can get some questions in about communication in general. So communication outside this process of the certification of the plan of care.

And so following our qualitative work we're going to be doing a nationally representative survey, to the extent possible, of home healthcare agencies and the clinicians that work within them.

Unlike physicians, there's not a database of all nurses and physical therapists who are doing home healthcare. There's actually a fair bit of turnover in the industry. So we probably will be choosing folks from a nationally representative sample of home healthcare agencies, and then trying to find the clinicians with them.

But that's part of actually what we’re hoping to learn in the qualitative work, is how best to design this survey to make sure we're really gaining a valid perspective from folks.

Eric: That's great! Well I want to thank you very much for spending the time with us today, and for the great work you're doing on this. I certainly learned a lot.

Alex: Thank you so much Cynthia.

Cynthia: Thank you for having me!

Eric: Alex you want to send us off with a little bit more of the song?

Alex: Alright! This is one of my favorite songs by the way. And this line, “Is a dream a lie if it don't come true? Or is it something worse?”, that’s a good line. [Singing].

Eric: Thanks everybody for listening to our podcast, we look forward to joining with you ... Alex you do it this time.

Alex: Hey everybody! Thanks for listening, until we do it again, we'll sign off right now. Eric and Alex, peace out.

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