Thursday, May 18, 2017

Rebecca Sudore on Advance Care Planning: The Prepare Trial

BREAKING!  We are posting this the moment the embargo lifts on Rebecca Sudore's Prepare trial.  As most of you know, Rebecca Sudore, MD, Professor of Medicine, UCSF Division of Geriatrics, is a giant in the field of advance care planning, particularly among diverse older adults with low health literacy.

Rebecca is giving a plenary presentation about the Prepare Trial at the American Geriatrics Society meeting in (hot) San Antonio Texas.  Today.  Right now in fact.  We timed the release of GeriPal's blog post and podcast to coincide with her AGS plenary.   Coincidently, JAMA Internal Medicine lifted their embargo at the same time. 😉

We talked with Rebecca about the results of The Prepare Trail, a randomized controlled trial of an easy-to-read advance directive PLUS a web-based decision aid vs the easy-to-read advance directive alone in 414 older veterans with chronic disease.  You can view (and use!) the web-based decision aid at (in English and Spanish).  The outcome was medical record documentation of new advance care planning (directives, POLST, discussion) assessed over a 9 month period following randomization.

Links to the podcast and a transcript below (for those who prefer to read).

Key points:
  • 51% of veterans had evidence of advance care planning in the medical record.  The VA is doing a decent job!  
  • In the 6 months prior to study initiation of the study, the rate of NEW advance care planning documentation was about 1%
  • In the 9 months after randomization, rates of NEW advance care planning were 35% in the easy to use advance directive PLUS video decision aid arm compared to 25% in the easy to use advance directive arm alone.
  • That's just the documentation rate in the medical record.  Upwards of 80% in both groups reported engaging in some form of advance care planning after the start of the trail.
  • The intervention was directed at patients.  It was up to patients to bring this up with their doctor on the next visit.  The literature is replete with failed studies that try to get clinicians to improve rates of advance care planning documentation.  That rates of new documentation were this high WITHOUT targeting physician or the health care system is pretty remarkable.  
  • Rebecca places this study in the context of the clinical reality, "You know, and as a geriatrician who sees patients in clinic and as a palliative care physician who sees people in the hospital, I think, many clinicians know the form's only as good as the discussion that goes behind the form. And that, especially in geriatrics and people dealing with serious and chronic illness, they're not dealing with just the one or two decisions that are on a form. They're dealing with many decisions. They and their family are wrestling with many decisions over time. And so it became clear in talking to patients and their family members that they needed some preparation for medical decision making. They needed some help. And a form in and of itself wasn't going to do it."

Enjoy!  (Bon Iver has a high voice, OK?  I'm just sayin'). 


Listen to GeriPal Podcasts on:

Transcript of the podcast:

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

Alex: This is Alex Smith.

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

Alex: We have a special guest today from our own division, Eric. This is Rebecca Sudore who is a professor of medicine here in the Division of Geriatrics at UCSF. And she's here to talk to us about a groundbreaking study that was released today. This is a randomized trial of PREPARE for Your Care.

Eric: And you're also today giving a talk, just a plenary talk on this, is that right?

Rebecca: That's right.

Alex: So we usually start off by asking our guests for a request and I know that we emailed back and forth. Any suggestions? What are you choosing here?

Rebecca: Well, what I really wanted was "Power to the People" by John Lennon --

Alex: Yeah, that's hard.

Rebecca: But you told me you didn't know how to play that.

Alex: Well, no, I could play it. (laughs) Let's clarify. But I needed a giant gospel choir behind me in order to pull it off.

Rebecca: Oh, yeah, Eric didn't want to play the gospel choir, so we're going to do "Skinny Love" by Bon Iver.

Alex sings “Skinny Love” by Bon Iver.

Eric: So tell us a little bit about this paper that just got published.

Rebecca: It was a randomized trial comparing two easy-to-use advance care planning tools. One was an easy-to-read advance directive and the other was the web site. And we found that by providing patients these easy-to-read tools, not only were they able to increase their engagement in advance care planning, such as have discussions with their family and friends, but over a third of them wound up putting their medical wishes into the medical record.

Eric: Wow! Well, before maybe we take stab at some of these results and what you found, let's maybe take a step back. The easy-to-read advance directive, is that the easy-to-read advance directive that you also created? Now, how long ago?

Rebecca: Yeah, it's been... wow, over 10 years.

Eric: Oh my goodness.

Rebecca: Yeah. I would say that I've probably spent the majority of my career trying to design and create materials to help people make more informed decisions. And I think advance care planning definitely is one of those areas where I think people need a little extra help. And so realized that there really weren't very easy-to-read advance directives out there. Most of them are written in difficult-to-read legal language. And they're scary and they're hard to read and that could be a reason why people didn't engage in them. So about, I guess, maybe it was 10, 11 years ago now, we created an easy-to-read advance directive that's written at a fifth-grade reading level. It has pictures that help describe the text. It's in English, Spanish, and about 10 other languages. And we had done a randomized control trial at our county hospital in San Francisco in English and Spanish and show that people not surprisingly prefer this easier-to-read form, were able to complete it. So that's sort of where all of that started.

Eric: And you didn't just rest on your laurels with that. Over time, and I've seen prepareforyourcare...

Alex: Prepare for your hair?... (laughs)

Eric: Prepare for my hair... Tell us a little bit about that Web site.

Rebecca: Yeah. I think, you know, we had created these easy-to-use advance directives. And I thought naively that I had solved the problem in advance care planning and that we would just give people these easy-to-read advance directives --

Eric: It didn't just fix everything?

Rebecca: It didn't fix everything. You know, and as a geriatrician who sees patients in clinic and as a palliative care physician who sees people in the hospital, I think, many clinicians know the form's only as good as the discussion that goes behind the form. And that, especially in geriatrics and people dealing with serious and chronic illness, they're not dealing with just the one or two decisions that are on a form. They're dealing with many decisions. They and their family are wrestling with many decisions over time. And so it became clear in talking to patients and their family members that they needed some preparation for medical decision making. They needed some help. And a form in and of itself wasn't going to do it.

So we did a lot of focus groups with patients and surrogate decision makers, people who had to make decisions for themselves and ask them what worked well and what kind of support did you feel like would have been helpful? And we took actually those stories that we heard from patients and surrogates and put them right into the PREPARE Web site.

Eric: So what is PREPARE for Your Care now and what can people expect if they go to the Web site?

Rebecca: We really wanted to create something that wasn't just education and information like "you should do this." I think a lot of people know they should do it; they just don't know how to do it. So we really wanted to make sure it was easy to understand and showed people how. So easy to understand, also written at a fifth-grade reading level, also in English and Spanish. And then the cornerstone really are these videos that show people how to do something. So how to choose a surrogate, how to start these conversations, how to ask your doctors questions.

There's five steps to the Web site and it walks people step by step through that process. And as people are going through, they can answer questions about their values and their goals. And then they get this printout that they can use to spark discussions with their clinicians and their loved ones.

Eric: So back to the study, so can you tell us a little bit about who you studied in this randomized trial?

Rebecca: Yes, so these were veterans at the San Francisco VA. They were from multiple primary care clinics. They were over the age of 65. And they were included if they had a primary care provider and they were seen in the clinics at least a few times in the recent year.

Eric: And this was a diverse group is my understanding.

Rebecca: This was a diverse group. I remember correctly close to 50 percent were from diverse backgrounds.

Eric: Mm-hmm (affirmative). And being a VA was mostly men.

Rebecca: It was mostly men. So there were nine percent women. We tried to over sample. And I think at our San Francisco VA it's about four percent in general.

Eric: Okay. And you compared what to what? What were the two arms of this trial?

Rebecca: Yeah, so one group got the easy-to-read advance directive. And the other group got the easy-to-read advance directive and the PREPARE Web site.

Eric: So it was an active control group?

Rebecca: It was an active control. This was a comparative effectiveness. Everybody got something.

Eric: So there was no usual care here?

Rebecca: There were no usual care.

Eric: So if you looked at their baseline, how many people actually had advanced care planning discussions?

Rebecca: So what we found is that about 50 percent of people had any kind of evidence of advance care planning in the medical record before. And when you look at the national average, that's telling you -- the VA is actually doing a pretty good job. I think what we found, however, is that the mean time of those discussions and/or forms were five years before.

And when you think about people change, people's clinical context change, and we often say that people should update their advance directives at least on a yearly basis. One of the reasons that we didn't exclude those people is because we wanted to give people the opportunity to update their information. And it's also one of the reasons why our primary outcome was looking at new advance care planning documentation to see did these tools help people do new advance care planning?

Eric: Right, right. And so what did you find? What were the major findings?

Rebecca: Yeah, so our major findings were that over 80 percent of people in both groups engaged in some form of advance care planning. When we looked back at the advance care planning rates six months before this study for the cohort, the advance care planning documentation rate was actually less than one percent.

But the group that just got the advance directive had an increase to 25 percent of documentation in the medical record. And the group that got PREPARE and the advance directive had a 35 percent increase. And that difference was statistically significant.

One of the other things that we found is that that's just documentation. But that doesn't include all of the other discussions and conversations that they were having. And people who got the PREPARE Web site also, sort of -- to have these conversations and felt more prepared to have them.

Eric: But it was up to the participants themselves to bring the materials that resulted from the PREPARE Web site to their clinician, is that right?

Rebecca: Right, right. And we timed the intervention so that it was about one to three weeks before their primary care visit because we wanted to give people the opportunity to bring it in. We did have a reminder wherein the control arm we reminded them to go see their doctor and in the PREPARE arm, we reminded them to see their doctor and to bring in any of their materials that they wanted to their doctor. So there was a little bit of a reminder there.

But it still, again, was up to the patient to decide whether to bring it into the clinic and then whether to bring it up with their doctor.

Eric: So the research staff never actually contacted their physician providers. This was all real life.

Rebecca: Right. And I think that's also an important point. We did nothing with the clinicians except get their permission to recruit their patients. We didn't tell them about the interventions. We didn't give them the interventions. We did no training.

Eric: So if I want to do this in my clinic, let's say I have a patient I want to try this out on, how much would it cost? Is it free? Is it...

Rebecca: That's a really good question, Eric. So the Web site is free to the public and the advance directives can be downloaded from the Web site. Clinics can download our easy-to-read advance directive, can download the PREPARE pamphlets, can put a link to PREPARE in their materials. UCSF actually has the ability to do licensing with any organizations who would like to incorporate these materials into clinical programs, who might want to what we call white label or brand the information for their organization, and who might want to integrate some of these things into their electronic medical record.

There are groups that have licensed from us because they want to know which patients are coming and to get a report back about how good they're doing in advance care planning. So there are licensing opportunities.

Eric: So it sounds like if I'm a patient, I can use it for free; if I'm a large organization, I should probably license.

Rebecca: Yes.

Eric: Great. Now, putting this study in the larger context of advance care planning, you have your finger on the pulse of what's going on in terms of advance care planning nationally. And we've interviewed some folks who are involved on this podcast including Angelo Volandes at ACP Decisions.* There's video advance care planning. Laura Hanson, we interviewed for a podcast about her video advance care planning in dementia and nursing homes. How would you situate PREPARE and the easy-to-use advance care planning in the context of all of these really interesting innovations that are going on nationally?

Rebecca: I do want to say that all the people that you mentioned are good friends of mine. It is a really exciting time because I think more people are starting to think about advance care planning and there are really amazing innovations out there. I want to talk about the Conversation Project, which also has a very community-based focus.

Eric: POLST.

Rebecca: POLST, the POLST group. I love Angelo's videos. So I think that there are a lot of materials that people can use. I think maybe what differentiates PREPARE and these materials is the fact that they are available to the public. They're easy to use, so they're targeted to a range of literacy levels. And I would say for something that can be a charged topic for some people, we've made it so that it's approachable, it's not scary, it's easy to understand. It's also in multiple languages, so it's in English and Spanish. We've translated the materials into Chinese, but we're looking for funding to be able to provide the information in Mandarin and Cantonese. So I think it kind of helps with the language piece.

The other part of it, too, is that not only is it evidence-based, which I think is an important piece, but we've really gone out of our way to design these materials with and for the community. So at every single step of the way in terms of our development, we include people from diverse backgrounds to give us help to make sure that what we're giving to people is culturally appropriate. So I think that that's where it can fit in.

Eric: Yeah, that's true. So what's next?

Rebecca: Oh, there's so many things. So first of all, we just launched our new Face page, which is sort of exciting. We have a little video montage in the beginning that kind of tells people a little bit about what PREPARE is. And we've launched in the new Face page a resources section so that people can download these pamphlets and the advance directives.

Some of the other things that we've been doing are we've tested PREPARE in group medical visits. Being able to use -- again, it doesn't necessarily have to be a physician, it could be ancillary staff because all the information in PREPARE is there.

I'll step back and just say people can go through PREPARE in an interactive way, clicking through the buttons, answering questions. And then all of that content can actually be wrapped into a movie and that movie can be played from start to finish, or it can be played one step at a time. But what that allows people to do is that even if you have no training in advance care planning, you can put on a group. You can put that group on in a clinic setting.

We've been sending it out and people have been using it in senior centers, libraries, places of worship. And you don't have to have any training. And we've created toolkits so that people can just take the Web site and it has everything in there from how do you send out an email newsletter about your event, how do you start the process? How do you click the play button on the Prepare Web site? It just really walks people through that.

So our goal really is to try to disseminate and to get the information out to as many people as we can.

Eric: So there's a lot of activity going on as far as reform of health care.

Alex: There is?

Eric: There's a little bit of activity. (laughter) There was a bill passed, something American Health Care Act or something. We'll see where it goes. But in any case, there's a lot of interest in reforming existing legislation, which is colloquially called Obamacare. How does what you've done in PREPARE fit in with health care reform?

Rebecca: There's a lot of work that needs to be done to fix the health care system. That is for sure. But I think we can say that no matter what your politics, we all want to have a voice in our health care. And advance care planning is a really powerful way for people to take control of their health. And it's really critical to ensuring that people get the care that they really want. And I think we found in this trial that really using easy-to-use tools, even with minimal input from the clinical system, can really empower people to engage in this important process and really prepare them and their families for advance care planning.

So my hope is regardless -- I think you both know how I feel about things -- but regardless of where things fall that advance care planning is still really important.

Eric: So what's the one thing that you want our audience to remember?

Rebecca: Well, I think that there are these easy-to-use, free materials that we've shown really help people engage in advance care planning, are non-threatening and they're a way to help people have a voice in their own health care and to prepare their family and friends. So they're out there in the public. And again, we really want to just get them out to as many people as possible.

Alex: Get the word out. If you're listening, spread the word. Go to Check it out.

Eric: Let's end with a little bit of music.

Alex: Tell your friends. I'm going to pull my pants up to get these high notes.

Alex sings “Skinny Love” by Bon Iver.

Alex: You're going to join in?

Eric: (sings) I've never heard of this song.

*Correction: Angelo Volandes is founder of ACP Decisions, not Vital Decisions.

by: Alex Smith, @AlexSmithMD

Read more »

Wednesday, May 10, 2017

Churning Patients Through Care Settings at the End Of Life: An Interview with Shi-Yi Wang

Check out our inaugural JAGS GeriPal Podcast!  JAGS, or Journal of the American Geriatrics Society, is the premier journal for aging research.  We will be interviewing a JAGS author regularly as part of this series.

For the inaugural JAGS GeriPal podcast, we spoke with Shi-Yi Wang, Assistant Professor in the School of Public Health at Yale.  Dr. Wang published a JAGS manuscript titled, "End-of-Life Transition Patterns of Medicare Beneficiaries."  

The @AGSJournal tweet about this article went viral.  OK, it went viral in terms of a Geriatrics tweet, not Beyonce viral.

A major part of the popularity of this tweet was due to the accompanying image.  The image that Dr. Wang created told the story of frequent transitions from setting to setting clearly, in a picture, rather than words.  Dr. Wang talks about being inspired by Hans Rosling, whose TED talk on The Best Stats You've Never Seen went viral (that's real world viral).

In a brilliant accompanying editorial, Joanne Lynn describes the reasons for these transitions: our health care system fails to support the majority of older adults with serious complex medical illness.
Instead, the United States is in the process of implementing ever-more-fragmented service delivery arrangements for Medicare beneficiaries living with progressive, eventually fatal, advanced illnesses and disabilities. Few outpatient physicians manage their hospitalized patients. New specialists in palliative care consult to settle goals of care and advise about symptom management, but they rarely provide ongoing primary care around the clock. Hospice promises to stay with the individual and family through death and bereavement—but hospice serves most enrollees only for 1 or 2 weeks. Hospice programs now often discharge very sick and disabled individuals when they live too long,[8] thereby abrogating the promise of continuity. The Program of All-Inclusive Care of the Elderly (PACE) rarely discharges participants, providing thoroughly comprehensive services to the end of life for elderly persons eligible for Medicaid and living with disabilities, but PACE serves only approximately 38,000 participants nationwide, which is a very small proportion of affected people. Outside of PACE and hospice, very sick and disabled people in their last phase of life usually see many different doctors, often in the emergency department and specialty consultation, without clear or comprehensive care plans and without the support that they and their families need.
Enjoy!  A transcript is below, for those who prefer to read rather than listen (you're missing out on a hack job of Peaceful Easy Feeling!)

Listen to GeriPal Podcasts on:

By: @AlexSmithMD

Transcript of the Podcast:

Eric: Welcome to the first GeriPal Journal of the American Geriatrics Society, or JAGS, Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And for our very first GeriPal JAGS Podcast, we have invited a guest!

Alex: So we have, Shi-Yi Wang, who is Assistant Professor in the School of Public Health at Yale, and welcome to the GeriPal Podcast, Shi-Yi.

Shi-Yi: It's my honor to be here.

Eric: We start off as always, with a song request from Alex. Do you have one, favorite band?

Shi-Yi: Either Beatles or Eagles.

Alex: Or Eagles! Okay, well I know a bit of both. We've done a lot of Beatles, on this show. We haven't done any Eagles. So let's do a little bit of Eagles here.

(Singing Peaceful Easy Feeling)

Eric: Excellent!

Alex: So, we're talking with you about your paper in JAGS, the Journal of the American Geriatrics Society, about end-of-life care transitions patterns of Medicare beneficiaries. Would you say that end-of-life care transition patterns are peaceful or easy?

Shi-Yi: Of course not. We all know that end-of-life care, in the United States, actually, is generally very aggressive. So, that's the reason I'm interested in, to understanding healthcare transitions and the importance of transition trajectory.

Eric: A little bit about what we know about this already, before this came out ... Quoted in your introduction, you talk about Joan Teno's study, looking at healthcare transitions just over the last decade from 2000 to 2009. While hospital deaths, and hospice use have increased, the number of healthcare transitions have significantly increased. So we're seeing this pattern of, I think one word to use is, churn, amongst Medicare beneficiaries near the end-of-life. Is that right? Is that a good summary?

Shi-Yi: Yeah, actually, this project is motivated by Joan Teno's paper – JAMA paper. We all know that multiple transitions have the potential for poorly coordinated care, medical errors, duplication of a diagnostic workup and the changes in the management. And that they can be burdensome for individuals and their family members and very costly to the society.

Alex: Very good. So maybe, you could start off by telling us what you did, sort of in a snapshot, big-picture view that our listeners could understand.

Shi-Yi: So we analyzed Medicare beneficiaries, or decedents in 2011. But specifically, we try to understand transition trajectories, and the national variation of the transitions, and the factors associated with multiple transitions. More excitingly, I mean, we produce sequence diagrams to visualize the sequences of healthcare transitions.

Eric: Yeah, so, I was very impressed. We’ll have a link to the article and an image of Figure 2, which was the sequence of care transitions in the last six months of a life for Medicare beneficiaries. But it's basically, a very detailed diagram of what happens to the people if they start off at home, or home hospice, or sniff in a hospital. And you can see the flow of these individuals over time, through these multiple transitions. Do you want to give us a little bit of a summary of what we're actually seeing with these transitions?

Shi-Yi: Okay, so, the centi-diagrams, have been used in science and engineer, for decades. Basically, the diagrams is a specific type of a flow diagram, in which the flows are shown proportionally to the flow of quantities. So we can see, patients move from home or hospital to other healthcare settings and keep moving. So we can visualize the sequences.

Eric: So, and when we're seeing this, we're seeing ... So, it sounds like for these sequence flow diagrams, the larger the ... What's the right word? ...

Alex: The area?

Eric: The larger the area, the more individuals are in that. And as it gets smaller, the less individuals are in that. Is that right?

Shi-Yi: Yes, correct. So for the picture, in that diagram, actually, we can see that 32.8% of decedents had four or more than four transitions in their last six months of life. And that the majority, actually, about 20% of decedents transition from home, first, to hospital, second, to home or skilled nursing facility, then third, back to hospital, and the fourth, another healthcare settings. I mean, 20% of them had this kind of transition sequence and I am surprised that there are so many people who went through this terrible care.

Eric: And, you know when we're thinking about transitions in care, do we have any data to suggest that multiple transitions are associated with poor quality of care, poor satisfaction rated by patients? Like, how do we know it's potentially poor quality care?

Shi-Yi: It's a good point. So far, we don't have the data to directly link healthcare transitions and patient's satisfaction, quality of care, et cetera. This is one of the limitations because some transitions actually are necessary. But, such profound, or so many transitions in the end-of-life does indicate recommended care during this important period of life.

Alex: And there's some variability it looks like too. It depends a little bit on what state you happen to live in. Is that right?

Shi-Yi: Yeah. There is substantial variation in number of transitions across states. From a low of 1.8 in Alaska, to a high of a 3.1 in New Jersey.

Eric: Oh! Don't want to live in New Jersey.

Alex: Just looking at these, you know, state by state, mean number of transitions, I was trying to identify a pattern. I'll just read for our listeners here it'd be states with the lowest number of transitions, the sort of top five lowest. We have: Alaska, Utah, Hawaii, Idaho, Montana.

So much more rural states, generally.

Eric: That definitely seems to be a pattern.

Alex: There seems to be some pattern. And then the other end of the spectrum, you have, top five highest number of transitions: New Jersey, Illinois, Mississippi, Arkansas, Louisiana, and West Virgina.

So there's some rural states in there as well. So there seems to be some pattern of rural states having fewer transitions. But there are also some states that are sort of more rural that have a high number of transitions. Florida, I see, is the next one on the list, that would be number six.

Shi-Yi: Yeah, and actually, Oregon is one of the best states, because I believe it is the sixth lowest state in terms of mean number of care transitions. So I mean, yeah of course, patients in rural areas were less likely to have multiple transitions because the access to healthcare systems ... Yeah, that's for sure.

Alex: It's interesting that the rural states that have high numbers of care transitions tend to be located in the south eastern United States. You're looking at Mississippi, Louisiana, for example. So it does seem to be a pattern there as well. You know it seems there was another major point of this article about hospice use. And early hospice use in particular. Could you talk about the Shi-Yi?

Shi-Yi: Yeah, perhaps I can take one step back. I would say one is hospital palliative care program. I mean, I think it's important, I believe, Sean has a podcast this month or ... ?

Alex: Yeah, we had a Sean Morris on our podcast a couple weeks ago.

Eric: Yup.

Shi-Yi: Yeah. So basically, I think it's very important that hospital palliative care program can have an impact on end-of-life care transitions if the program can descend their care to more patients in hospitals. Because most of the patients had an experience with hospitalization before they die. So that's one thing that I want to emphasize.

And return back to your question that I believe that hospice use might be underutilized in some areas because in the states with multiple transitions, they tend to receive hospital care, but they were not referred to hospice early enough. And actually Joan Teno's group has demonstrated that hospice use in a very short period of time, might not be beneficial for beneficiaries because they still receive a great end-of-life care until to the very end-of-life, then they were put into the hospice. So, it's important to have a hospice service earlier so that we can prevent multiple care transitions.

Eric: So it looks like from your article, is that, you know, one big difference between let's say Utah, a low transition state, to New Jersey, a high transition state, is that hospice use looked like it was much more common earlier on, 90 days, 150 days, 180 days before death versus New Jersey, where it was relatively infrequently used. Am I seeing that correctly?

Shi-Yi: Yes. Of course, if we only looked at the last day, I mean the date of death, it's about 40% to 55%. But I would argue that it's not just only the hospice utilization, it's also the timing of hospice utilization. We can see across the time horizon, the proportion of patients who used hospice in Utah was higher than that in New Jersey. So I think that's the key.

Eric: Could that also be ... I mean, I can imagine that could be explained by both systems factors, and also patient preferences. Do we have any indication from this study on what causes these differences amongst states?

Shi-Yi: No. I mean, unfortunately, we don't have patient preferences, and they actually ... We also think this is an urgent future research to understand patients, first, preferences as well as the care transition and the quality of care or patient satisfaction. And I also think that Utah may also have a stronger family bond so that family members can help or can take care of the patients. May be also the reason why Utah can have a lower transition numbers.

Eric: Yeah, that actually reminds me too of ... We just had Michael Fratkin on to talk about delivering palliative care in rural America. And some of the differences that we see in urban America. And I wonder how much that I learned from Michael and that podcast also applies to this study, looking at the differences between what we're seeing rural versus more urban areas as far as multiple transitions. And that could be in patient factors, it could be other issues around systems of care.

Alex: It also reminds me that, you know, even within these states, there's tremendous heterogeneity. So that, you know, within a big state like, California, for example, there are major urban centers and then there are vast swathes of California that are very rural. And that's true for a number of states on this list.

Eric: Yeah, and I think back again, Joan Teno's work, how even within a city, hospitals can be right next to each other and even use ... One can have very high versus very low utilization of things like peg tubes for advanced dementia.

Alex: So, what's next for you as far as this research?

Shi-Yi: So, we would like to know patients preferences especially for those who were enrolled in hospice. So I mean the CMS right now has the CAPS hospice survey. So potentially, we can understand more about patients preferences as well as family members preferences in hospice enrollment, yeah.

Alex: And what's your major take home finding that we can take away from this? Not just in terms of future research. But is there anything that we can take away as clinicians who are practicing or in terms of change to the healthcare system?

Shi-Yi: I think we can use Utah as a benchmark, so that other states ... Physicians in other states should consider that try to avoid aggressive end-of-life care and also understand patients preferences and to have some kind of health goals of care or health goal care plans for individual patients. Also, we think hospice utilization as well as palliative care programs should extend to help patients to make their end-of-life care treatment decisions. Finally, I think data visualization will help researchers, patients, and clinicians to communicate the potential or the care transition trajectories. I think that's all.

Alex: That's terrific. And I think that the sequence diagram, the sequence of care transitions actually, is brilliant. It's a brilliant image. And it's so terrific that you've brought that methodology into the healthcare field and health policy. Thank you.

Eric: Yeah, and I love the idea of visualizing data in ways that brings in new insights and it makes it much more easy to understand what all this means instead of just a table.

Alex: Right, and this ... You tweeted this through the Journal of the American Geriatrics Society account which we should note is, @AGSJournal. And that, that tweet went, you know, viral. So viral for Geriatrics, okay, is not thousands of retweets, it's you know, tens, twenties, thirties, forties. That's viral. We count that as viral. And I think part of the reason it went viral, is because the picture told the message so clearly. And it drew people in in ways that a table would not have.

Shi-Yi: Yeah, I mean, actually, it's inspired by Hans Rosling. He has a great TED Talk before. Unfortunately he died in February. I believe you all ... You have all seen his talk about global health, that kind of bubble. I think that's a fantastic way to show results and to communicate with others.

Alex: We can put a link to his TED Talk below.

Eric: Okay Alex, do you want to end us off with-

Alex: Yes-

Eric: A little more?

Alex: Happy to end with a little more Eagles. Shi-Yi, thank you so much for being part of the GeriPal Podcast today. We really appreciate you joining us.


Produced by: Sean Lang-Brown
Read more »

Tuesday, May 2, 2017

Samir Sinha: Redesigning Health Care Systems to Be Elder Friendly

On this weeks GeriPal podcast, we interview Dr. Samir K. Sinha, MD on how he has influenced local and national policy in Canada to redesign the care given to older adults.  We talk about the key elements to design an elder friendly hospital and community, including elder friendly design, as well how we can all get involved in influencing policy.

Dr. Sinha is the Director of Geriatrics at the Sinai Health System, an Associate Professor of Medicine at the University of Toronto, and Assistant Professor of Medicine Johns Hopkins University School of Medicine. Among his many accomplishments is that he lead Ontario's “seniors care strategy" and is now involved in the development of a National Seniors Strategy.

Listen to GeriPal Podcasts on:

Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: And Alex, I heard we are going international today.

Alex: We are going international today. We are pleased to welcome to the GeriPal Podcast Samir Sinha who's a geriatrician and heads the geriatrics group at the University of Toronto, where he's Associate Professor, and he also has an appointment in Johns Hopkins. He's an innovator and he's done some incredible work. We look forward to talking to you today. Welcome to the GeriPal Podcast!

Samir: Thanks for having me, guys.

Eric: We usually start off by having our guest ask for a song for Alex to sing. Do have a song for Alex?

Samir: Being from Winnipeg in Canada, we're the home of Neil Young and do you have a little “Harvest Moon”?

Alex: I love my Neil Young. He is one of my favorite musicians. Just going to play a little bit the chorus right here and we'll do a longer bit at the end.

Alex sings “Harvest Moon” by Neil Young.

Eric: All right, Samir, we had the luxury of having you over for grand rounds and I also had a chance to Google you after those grand rounds to see some of the things that have been said about you and one thing that came up was from The Toronto Star. It said that this past spring, I think this was a year ago, the Ontario Minister Deb Matthews tapped you to lead the provinces senior care strategy, and the Toronto Star quote was "At only 36, this wunderkind has a daunting responsibility on his shoulders to overhaul the way health care is delivered to Ontario's 1.9 million seniors." That sounds like a very big task.

Alex: Yeah, it was interesting. So, this is a few years ago now, I've actually just turned forty, which I'm very proud of as I'm ....

Eric: So, you're no long a wunderkind.

Samir: No longer a wunderkind, first of all, and you can't believe everything you read in the papers. But that actually was that was a real neat opportunity. That really reflected a great opportunity to try and think about the things that we know is geriatricians to be important about, not just thinking about what is the illness that's affecting our patient but also thinking about that more holistically, because often we think about our patients having social, functional, and other issues, and we know that it's not just about what we do in terms of prescribing a pill, or prescribing a therapy but it's about looking at the social determinants of health. So, when I got a chance from our Minister of Health at the time, who actually had a PhD in social demography, so was very interested in issues of aging and how that affects our society as a whole, that was a real cool opportunity to say, "What should our blueprint be for Ontario? And really to help influence Canada, being its biggest province." And so we created a report called Living Longer, Living well and it got downloaded, actually, 75,000 times, which is kind of awesome.

But it really gave us an opportunity to talk about the need for age friendly communities, to think about how we promote healthy living across a lifespan, and then think about how do we retool our health care system and other aspects to meet the needs of an aging population. So, a huge honor, but a big responsibility.

Eric: And you talked about Elder Friendly Design, what is that?

Samir: Yeah, so it's one of these things where you think about this concept of age friendly communities. So, the World Health Organization back in the late 2000's came up with idea about saying there are different aspects we need to think about within age friendly community, and it's everything from making sure that we value older people, we think about their needs. But it's also about how we design our public spaces, to actually enable older people to stay active and engaged participants. So, it's little things like reminding ourselves that as we age there's many good things that happen as we age. We're probably smarter and wiser, but we may have more problems with our vision and hearing, and so because of that ... And our mobility might be more impaired. So, how do we make sure that our communities stay accessible and everything right down to the buildings that older people might encounter, like our hospitals. So, how do you start thinking about age friendly design that enables people to still move around their communities, and move through buildings, and actually not have buildings, and even our communities, be harmful. So, I can give you some examples if you like.

Eric: Yeah are you suggesting are hospitals and dyads may not be very friendly to older adults? That's shocking. Well that's the majority of folks they see.

Samir: Exactly, well so, think about this, right? So, if you think about older people in general, not every older person. We got older people who are marathon runners extraordinaire, but the average older person might have some functional decline. So, getting across that street intersection as quick as we might do and where younger might take an older person a bit longer, and so to encourage people to safely cross the street like New York City, Toronto has now actually lengthen the street walking times. We've made sure that the lettering on street signs when people are driving are a little bit bigger so people can actually clearly see where they're turning. So, it's some of those little things that you don't think about, and we put 1000 new park benches around the city, specifically, in areas where older people might gather because, again, if you get a bit more tired you want to rest your legs, but you want to be sitting on a park bench with arms that allow you to get up and out of that chair as well.

Now, think about in a hospital. Hospitals were designed, on average, 50 years ago, most of them, when the average Canadian was 27 years of age. So, when we're young, we can run around places and it doesn't matter how they're designed, we'll figure it out. We can climb over barriers and do our things. But for older people, we know that bed rest for example, every day that you're lying in bed, for example, you lose percentage points on your bone and muscle mass, and bed rest can actually be terrible. There's great researchers in the United States who coined this term "Epidemic of immobility" that occurs in hospitals, and now you imagine that hospitals are noisy places. Hospitals that which promotes delirium. Hospitals can be places where if you're in bed all day long, all of a sudden, and you're not oriented this can precipitate delirium and functional decline. So, little things now in terms of the way we design hospitals can make a huge difference. For example, ways in which you promote mobility by making sure that there are grab bars along the walls so people can actually get up and feel confident walking around.

We really recommend that people are not getting breakfast in bed in our hospital. In fact we ban breakfast in bed at out hospital, and we know that just being mobilized up in your chair three times a day, with meals, is a great way to promote mobility. Now, our nurses noted to me that we don't actually have enough chairs to put beside bed sides which is why the nurses are so smart at my hospital. So, what did we do? We bought a chair to be beside every person's bed because that way we have no excuse to not get them up, because we're not serving breakfast in bed, but if we can't get them up in a chair ... So, it's little things like that, or making sure that clocks are actually facing the patients and not the providers. So, that way our patients can stay oriented. So, it's little things like that, but it's also bigger things in terms of when we're redesign buildings. Choosing the paint colors, thinking about those things are so important.

Eric: Paint colors.

Alex: You have paint colors?

Samir: Paint colors, absolutely. So, there's actually a really good resource on the Web It's called Code Plus, and if you look at up it actually shows you design strategies that can make a hospital, for example, more elder friendly, and so it's a real cool resource, and it'll remind us that even paint colors can actually ... Especially when an older person might be sitting in a room for a number of days just staring at the wall, unfortunately. Unless there's some nice art, or nice window to help prevent them from becoming delirious and actually stay alert. So, paint colors can actually be important. So, thinking about colors that are more cheery and not dreary, and so when we actually designed our ACE unit, we actually had a paint off where we actually got a few different shades of yellow and we put them up on the wall and the nurses voted on the color they thought would actually be the most elder friendly, and you think it's like ... paint is paint. It all costs the same, right? But if you choose black for your walls that would be pretty scary and depressing. But for the same price you can choose a cheery yellow that puts everybody, especially the grumpy geriatricians in a good mood.

Eric: So, have you ever heard of the concept of "unpleasant design"?

Samir: No, but maybe it just coins a whole new area ...

Eric: There's another podcast I love listening to 99% invisible, and they had an episode on unpleasant design. So, actually designing things to be unpleasant, you mention park benches with armchairs, there's designing of park benches so people can't do multiple different things whether sleep on it, or skateboard on it. So, they design these things so they're unpleasant and people don't want to hang out in them. For instance, I worry for, again, my cynical part is, how much of the design that we see in the hospital is so people don't get very comfortable in the hospital? Or are there unpleasant design concepts that you see that may have more ulterior motive?

Samir: Yeah I don't think hospitals, necessarily, would actually design themselves unpleasant because you think that some hospitals don't want a length of stay ... they want people staying longer than they want to be there for financial purposes, and everything in efficiency. But, again, hospitals, by and large, are trying to attract people to come to them. They want to provide care, and I think let's be nice and think that our CEOs and our colleagues really want to make these places appearing friendly. But I think ... Here's the magic of geriatrics and elder friendly thinking and design is realizing that maybe some of the things that we have been doing are actually not informed by the best evidence in practice, and actually, become unpleasant by their nature. So, an example we talked about before this was our hospital wanted to have new flooring in their brand new lobby, and so the designers were really pumped on having black shiny floors, and our head of rehab freaked out, appropriately. Because you think about, okay, well who are the people in our hospital? Tend to be older and frail. Tend to be walking with shoes that have black soles, and so the question is when did the black soles and the floor begin, and so if you have cataracts or glaucoma and you're navigating that black shiny floor with a lot of glare. You can imagine it is a fall risk waiting to happen.

So, that's your unpleasant design right then and there, classic example. So, we actually advocated, involved me meeting with the design team, and actually going crazy, in terms of I actually took my shoe off and put it on the tile, on the table. When have you been in a room where a geriatrician has taken their shoe off and put it on the table? We've got to do more of this, guys! But, the point is by showing that they're like, "Oh my god that is so unpleasant and that will be lawsuits galore." And so, this is where we decided to choose a nice, matte finished gray tile that still is an aesthetically pleasing but will not lead to increased hip fractures in our organization.

Eric: High contrast. Lots of contrast between different colors to make sure people know where things are ...

Samir: But they haven't taught us this. Did you learn about contrast and colors in medical school?

Eric: No.

Samir: And people would think this is really fluffy stuff but this is actually super important stuff.

Eric: So, how did you learn about this?

Samir: You know what part of it was? Googling on the Web. You start hanging out with like-minded people and hanging out with designers who started talking about these concepts of age friendly design and you start realizing that, wow, if we're going to think about age friendly societies, back to that whole issue, there's a lot to learn when we start thinking about our roles, and our roles where, collectively, we're geriatricians and palliative care providers. But sometimes we forget that we wield a lot of power and influence at times when the hospital has a design committee. They want to physician, or whoever, to sit on it, and again, there are a lot of designers there who don't know what we see and how we think, or who are patients are, and so they're designing things to be pretty, and in their view, practical. But if they don't have that knowledge that we have, and if we don't educate ourselves then we can't actually be more effective as leaders. Whether it be thinking about the care we provide, the design of the environments we work in, or even how our societies actually work to better meet the needs of an aging society.

Alex: That sounds like it's more than just physical design.

Samir: Absolutely. So, you think about ... There's this concept of the elder friendly hospitals. So, I'm a big fan of this because it's a nice framework to think about, not just the design, which is a part of it. But we have lots of people who come to see our hospital and the work we're doing in geriatrics, and they want to go see these physical spaces. They want to see the shade of yellow on that wall, and I tell them "Honestly, it looks like any other ward in any other hospital. the secret sauce is the staff, and the attitudes, and the knowledge." So, every person who works at our organization at Mount Sinai Hospital in Toronto they actually ... the secretaries, the folks who work in finance, the folks who work at our coffee shop-they all do age sensitivity training, so that they know that we value older people and we know that older people sometimes need a different approach. So, it's changing our culture, which is one of those elements. Physical design is another aspect but not the most important, but an important one. But then it's also thinking about our policies and the way we design our care processes to think about, "Are we anticipating those older adults who are at high risk?"

Are we thinking about how to cause less harm, or no harm whenever possible, and how to make sure that we can focus on the most important thing for older patients is trying to get them back home, whenever possible.

Alex: So, that must include a lot of thinking about what happens out of the hospital.

Samir: Absolutely, so, and again this is the whole issue is that sometimes, by the nature of the work, we're all busy people. So, people who work in hospitals are really good about doing work in hospitals. But one of our concepts is, as a hospital we're not an island. We work as part of a broader health system, and our patients, they don't magically just appear in the emergency department like a video game. They actually come from a place called the community, where they're not living in beds all day long. They actually have families, and they have aspirations to stay independent in the community. So, this is why it's really important to understand who they were and my mentor from Hopkins, Randy Barker, used to always say to me, "Who's at home?" Right? He said that's the first thing you want to know. So, whenever anybody reviews a patient with me I want ... obviously one of the basics ... we have a 93 year old lady from ... where's she from, and who's her family? However she defines that, because all of a sudden it tells you everything you need to know. Here's a lady in living independently at a home with her cat, right? And she's here because she's got this issue.

So, and I know immediately if she's got a cat, she's freaked out about her cat. She doesn't care about her pneumonia, she wants to know who's feeding the cat and if we don't acknowledge that then we're not actually helping her to relax and feel that she's in a place of healing and comfort. So, our social worker's all over the cat issue, immediately, and then we can help her out. But then how do we make sure we're not going to have her go delirious? How do we make sure that we realize what was her baseline before? Where is she at now? And if she goes home let's make sure that we have the right home care in place. Let's make sure that we have the right supports and the follow up, so that we can get her out of the hospital as soon as possible. Get her back to her a cat as soon as she needs to be there, because that will help her heal better than being alone with us, frankly. Cats are just so much more nice to be with than say a geriatrician. Just being honest. But we're nice people, but we're not fuzzy like cats, not yet. Maybe if I don't have a haircut.

But the point is you want to think about the community, and so we've thought about models like getting our paramedics engaged, doing more home based primary care, more home based palliative care, and other supports that keep people out of hospital but also help people get out of the hospital and stay independent in their communities.

Alex: Yesterday in your terrific Grand Rounds presentation, you put up a slide and I'm just going to read a few of the numbers from the slide. "We have choices and options. one day in the hospital costs $1,000." Probably Canadian. "One day in long term care costs $160. One day of supportive housing, or home and community care, costs $55." So, could you talk a little bit about those differences in costs and how you're hoping to change the landscape of home based services in Ontario?

Samir: Yeah, so it's an argument that you see is getting played out around the world. so, those dollars really show you a paradigm where we often don't think about numbers in our society. We just know we spend a lot of money on health care, and when you think about older adults ... So, in Canada our stats are 16% of our society are older adults but they actually represent 60% of our hospital bed days, and when you think about how expensive, as you just read at the numbers, hospital days are, that's a lot of money being spent to care for older people in hospitals. Now, we're not saying that we should not care for older people in hospitals. But if we actually think that, in Canada, if we don't have the right mix of home and community care services and other supports, then people actually just kind of hang out in the hospitals until we get our acts together and get those services in place. So, imagine now ... and we actually have 15% of people in Canadian hospital beds who are waiting to go home, or going to a rehab center, or to a nursing home because we don't have the right mix of services in place and there's lots of other inefficiencies in every other health system as well.

So, that costs us billions of billions of dollars. But if I actually just had more home care in place I could actually get people out of hospital sooner, and so that was my pitch to the politicians because a lot of people ... again, politicians, they want to get reelected. That's their number one goal, right? If you think it's anything else it's not, right? So, they want to get reelected, and I think, by and large, smart politicians also want to do the right thing, which is helps them get elected. So, the ... but I think the key is, when they start thinking about things people who don't have the knowledge and skills that we do, or the full understanding, would say, "Wow, we've got lots of older people living in hospitals, or need long term care nursing homes. Maybe just send to a nursing home." But, okay, I'll do a little poll in the room. How many of you ... well, of you two, so I've got two people in front of me, and our live studio audience, so okay. How many of you aspire to end up in a nursing home? Nobody. I've asked that question to thousands of people now in all the talks I've given. Nobody ever raises their hand.

So, the key is people want to stay at home and you just read out the numbers. It's far cheaper to care for people in their home and there's great evidence for home based palliative care, home based primary care. It's cheaper, it's more cost effective, it's actually in line with what people want. So, if you're a politician who wants to get reelected, as our government did to, they actually came out and said "We're going to build no new nursing home beds, we're actually going to give more people more home care." And you know what? They want to majority government. So, politicians out there who are listening and there's probably lots listening to the wisdom of this blog. Honestly, if you talk about helping people stay at home, you resonate with what the people want, and ironically, or not ironically, logically it's actually the cheapest option. So, this is where our government actually froze hospital budgets for five years in a row, and they invested ... They've increased home and community care budgets in our province by 5% as part of the work that I had done, and by doing that we actually have seen less demand for nursing home beds now.

We've actually seen the placement of older adults into nursing homes is decreased by 27% mainly because we actually have more home and community care available. So, it's kind of an interesting opportunity where, again, geriatricians who know what their patients want, which is nobody wants to go to live in a nursing home if they can resist that. So, it's actually when we show the politicians that what the people want is actually what the least costly option is. All of a sudden, we have an opportunity to actually do the right thing, and actually save our system dollars as well.

Alex: So, we have a challenge to that from one of our listeners. So, I tweeted out the image of the slide yesterday and David Grabowski, who a professor of health care policy at Harvard Medical School, responded with a question. He said, "Home care based services, lower cost per day, but research suggests home care based services are higher in cost to the system, system wide, due to increased use. In other words, if you build it, people will use it." The key question here, "Are home care based services more cost effective?" I think he's saying system wide here.

Samir: No, it's an excellent question, and I think, here's a few ways to look at it. So, when you actually look to Europe. So, when Europe was actually building in systems that had more integrated home and primary care, much more robust than what we do in Canada and the US. So, one of the challenges they had was there was actually this policy thinking in the 50's called floodgates mentality. That if you actually provide more home care then society would stop looking after their families and friends because they would just leave it to the state, right? And so, a lot of political conservatives say, "We should not be a welfare state because if we do this for people they'll stop doing their familial duties." Okay, so actually none of that is ever held true because that's basically saying that you are no longer going to want to take care of mom, or your brother, or sister, or whatever.

In fact, the data, and I can only really speak to the Canadian data, but we know that 98% of home care, government funded home care recipients, have a caregiver involved in their care, and when you actually look at all the home care that people living at home receive, 70% of it is actually provided by unpaid family members and friends and only 30% of it actually ends up being what the government puts in. So, you can imagine here that there are a lot of family ... So, people don't abandon their loved ones, number one, and that's why home care is such a cheap effective option. Now, if you got rid of all the families and friends and then we just had to provide all I care it becomes very expensive. But in reality it isn't. Now, the other aspect that when I've talk to government policymakers because we've really expanded home based primary care in Ontario. Canada, it's the only province in Canada where we're actually seeing an increase in the house call, again, the rebirth. Mainly it's because we've made some economic maneuvers to do that.

But the arguments there are the people say, "Well someone doing home based primary care. They're only seeing eight patients a day." And they say, "Well, shouldn't we just create buses where we just bring all these people to the clinic?" Because in a clinic you can see 50 patients a day. But here's the thing. Patients who require house calls ... So, we have a great house calls program that we partner with in Toronto and we use the tagline the House Calls for ... It's an advertisement but just amongst ourselves as clinicians we say "We provide House calls for people for whom it's a necessity and not a convenience." If you're home bound you probably have a lot going on. You're probably quite medically complex and at very very high risk for going to the emergency department and living in a hospital at a $1,000 a day. So, these are the types of patients we're talking about who are the most costliest to care for in the system.

But there's great evidence and anybody in ... And our colleague at Harvard could look at the evidence coming out through the independence at home demonstration project in United States that centers for Medicare innovation have been funding. Because that's actually significant shown that home based primary care models which absolutely are very intensive models of primary care. But when you ... And of course, if you did that for a person who didn't need home visits that's a really expensive intervention for a person who didn't need it. But when you match that level of intervention for that level of need you actually find that that saves a significant amount of money because it's avoiding hospitalizations and ED visits and that's where the cost effectiveness of the model. So, I'm not advocating home care and intensive home care models for everybody but it needs to be targeted and the evidence is showing us very clear. Especially, when you look at models like hospital, home, and other aspects that actually you can do this care cheaper.

People are likely to die less. They're actually able to get better health and system outcomes, and so it's interesting because there's still a lot of people think that this is all boutiquey, and it's kind of fluffy. But it's actually the smart thing to do and a lot of leading models in the UK or in Europe, in particular, home visits are just a standard part of local primary care practices. But it's still not as common as you'd think in North America, and we've got to change that.

Eric: I'm incredibly impressive, what you've done, including at the local level, creating acute care for elderly strategy. At you hospital in the community. At a regional level, thinking about what you're doing in Ontario, around the senior strategy and now nationally, you're involved as well as creating a senior strategy is that right?

Samir: Absolutely.

Eric: Can you tell us a little about that?

Samir: Yeah I think, again, I was very lucky in Ontario that I had a Minister of Health who had a PhD in social demography who said, "Hey, can you give us some advice?" And, "Hey, we might even follow it too." Which is kind of cool. But you also start learning that, just like both of you have realized, you're not going to wait for someone to tell you to wait to share your ideas. Sometimes when you have good ideas, you need to broadcast that out there and start a movement yourself, and so with our national senior strategy ... It's actually kind of fun because we actually had a federal election coming up and some you'll know that our ultra-cool new prime minister is Justin Trudeau. But again ... Yeah, no, we saw an opportunity there to say, "Fresh new government, potentially going to be elected. But how do we make older people part of that agenda?" Right? And so, we could have waited for someone there to come and ask us and we were just tired of waiting. We just said we have good stuff to share and actually our National Institutes of Health Research, our Canadian Institute of Health Research, they gave me a grant and said "Lots of people talking about seniors. Good, good for you. But they don't know what they're talking about. So, could you actually create evidence informed national senior strategy?" So, get this, I got research dollars to actually do something really fun and I was actually looking at the issue of co-pays, and looking at pensions ,and looking at housing, and all these different things. So, we actually created a website, because that was part of the grant. You can go to and you'll find ... You can follow us on Twitter as well @NSS, for national senior strategy underscore now. So, @NSS_now, and you can follow like what we're up to.

But basically by actually talking about the importance of what our federal government could do through supporting people to stay independent and productive. Helping to promote healthy and active lives, making sure that we can provide more care closer to home, and also doing things like supporting caregivers, especially when one in three in Canada are actually balancing work and unpaid caregiving duties. All of a sudden, we could show the federal government - that was our goal in this strategy to show the federal government what they actually held the levers towards and could do, and the cool thing is that Justin and friends, our new minister of health who's a family physician and a great collaborator of mine from her previous life. Our new Minister of Finance, and our new Minister of Families and Social Development who actually is an economist from one of the universities. They are super smart people and they actually have read our report, and they have now changed our pension program in Canada to make sure that people are not aging in poverty.

They've already established a new caregiver credit to help make sure that people who are caregiving don't end up in poverty. They've also committed six billion dollars for expanding home and community care services across the country. So, it's not too bad what you can do, even when you're not asked to do it. So, my advice there is, we can create a movement and it starts with us.

Eric: Well, talking about creating a movement, it is really impressive what you have done and your ability to advocate for care of older adults, and we need a lot more of that, especially in the US.

Alex: We also have a new government, and a new president.

Eric: We do.

Alex: Have you heard of this guy?

Eric: Donald ?

Alex: Donald somebody or other.

Eric: What are three things that listeners on this podcast can do to get involved with policy and advocacy that you've learned may be effective?

Samir: Okay, I think the key is, A, some people think that, "Well, maybe that's somebody else's job." and you know what? It's everybody's job, number one. So, my advice is ... the way I started is we're all part of a community, and it could be a big community, it could be a small community, but get to know your community, and get to know your neighbors. Because you often start finding out that ... I was worried about older adults falling at home and then I realized that our chief a paramedic services in Toronto was worried about older people falling at home as well, and he told me that and I said, "Well, do you want to work together?" He said, "Oh, we would love to work together with you because if we can prevent people from falling at home then there's less 9-1-1 calls." It makes their lives easier and they're not seeing people suffer as well. So, we immediately came together and we created a community paramedicine program, and that's an example where, who's in your neighborhood and it doesn't have to be as crazy as a need as that.

But it could just be a matter of if you're a physician working in the local community, get to know the local social services agencies and sometimes they'll say to you, "Oh goodness, we're dealing with the same patients, so maybe we could just give a half an hour of each other's time a week and we could actually case conference a bit." And that'll save each other time. So, it's, A, getting to know the people in your neighborhood, B, figure out what the issues are and what role you can play either to facilitate, to educate, to support. Because sometimes you're not going to be the leader but you can be the best supporting actor, right? And the question is when is it important for you to lead? When is it to follow, right? So, when my head of rehab said I need to get up to a meeting, canceled everything I was doing, and put my shoe on the tile I always say, "Tell me where the hoop is and I'll jump through it. Tell me where to stand, when to bark, and how loud to bark, and what to bark about."

So, because I realize I have a level of influence. We all have a level of influence, and know when to use it, and be prepared to use it that way.

Alex: And then one more.

Samir: And I think the last thing is, I don't know if it's copying the same other thing but it's about educating yourself on the issues. Stay abreast of the issues, and stay on top of what the political winds of change are.

Eric: Like listening to podcasts?

Samir: Listening to podcasts and it's paying attention because you know what? You may have a great idea, but it may not be the right time, and my whole thing was, I had political conservatives and people thinking about money and health care. And then I have more kind of liberal minded people who are saying, "Give the people what they want." And so, I think my greatest accomplishment in working on the Ontario strategy was getting all three political parties, who had very different views, to actually come together and all argue about the importance of home care. And from the conservative standpoint it was all about dollars and cents, and from the bleeding heart liberal standpoint it was all about this is just the right thing to do, and you know what? In the end, everybody saw ... Came to the same conclusion but they came to the same conclusion from different paths, and doesn't ... I don't really care in the end. Frankly, my patients are getting more home care and that's what matters. So, but it's also knowing when to strike. So, pay attention, listen to this podcast because you will have endless sources of wisdom, and then know when to strike.

Eric: Great. Well, I want to thank you for joining us on the podcast.

Alex: Thank you so much.

Eric: Alex do you want to sing us a song?

Alex: All right. I just want to ... So, you grew up in Winnipeg and Neil Young is the local folk hero there?

Samir: One of our local folk heroes. We are actually a hotbed of cultural talent.

Alex: Who else?

Samir: There's the Guess Who as well, and some newer folks like Shontelle Kreviazuk, and other things. So, just, yeah, little hotbed of talent.

Alex: I'll have to check it out, and your history teacher wrote the biography?

Samir: Exactly. John Anderson, he actually wrote the autobiography of Neil Young.

Alex: That's great. This was your history teacher in high school?

Samir: Exactly.

Alex: Yeah, so a little bit more “Harvest Moon” here, from the top.

Alex sings “Harvest Moon” by Neil Young.

podcast produced by: Sean Lang-Brown
by: Eric Widera (@ewidera)
Read more »

Tuesday, April 25, 2017

Palliative Care in Rural America: An Interview with Michael Fratkin

This weeks GeriPal Podcast is an interview with Michael D. Fratkin, a palliative care clinician and founder of ResolutionCare, a palliative care service for rural and resource poor areas in Northern California.

We discuss the barriers and benefits of providing specialty level palliative care for areas that generally have no access to these services, as well as ways one can fund it.   In addition to discussing traditional house calls visits, we also discuss novel approaches, including in-home video conferencing.

Listen to GeriPal Podcasts on:

Transcript of the podcast:

Eric: Welcome to the GeriPal Podcast, this is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who is our guest today?

Alex: Today we have Michael Fratkin, who is a palliative care clinician, and founder, CEO, CMO, chief bottle washer, soup to nuts, everything of ResolutionCare, which is a palliative care service for rural and resource-poor settings in Northern California, based in Arcadia, California. Michael, welcome to the GeriPal Podcast.

Michael: Thanks gentlemen, pleasure to be here.

Eric: And we start off with our guest requesting a song from Alex Smith. Michael, do you got a song for Alex?

Michael: Yeah, it's “From Great Heights” by Iron and Wine.

Alex: This is a terrific song. I think the second Iron and Wine song that we're playing here for the GeriPal podcast. I will try to do it some justice.

Alex sings “From Great Heights” by Iron and Wine.

Eric: Lovely!

Michael: Uh-hum (affirmative). Thank you so much Alex, I just want you to go on and on, and play that circular song over again! Thank you so much.

Alex: We can only do a snippet.

Michael: So be it.

Eric: So Michael, tell us a little about ResolutionCare.

Michael: Oh my goodness! ResolutionCare is a product of a burned-out, under-resourced, rural palliative care physician, who just wanted to believe that there was a better way, a different way. I live up here in beautiful far Northern California, in a community I'm in love with, I've been here for 20 years.

Eric: And that's several hundred miles away from San Francisco, is that right?

Michael: Yeah, it's 250 plus miles from San Francisco. And it's gorgeous; empty beaches, and redwood forests, and six wild and scenic rivers. Yeah, it's just lovely up here, I've been here for 20 years. In 2014, I had kind of come to the end of my rope. There was four or five consults for every one that I could actually do. I had very little in the way of resources on the ground. I was trying to do some community-based worked, and I just didn't have any resources to do that.

Eric: So what did you do?

Michael: Well, first thing I did was look around the world and look for another job. I looked for jobs down in the Bay area, Santa Rosa. They're not hard to find for an experienced palliative care docs, but then I kept driving home. And I've fallen in love with my trees again, and not wanting to leave. So the short version is, I cooked up a scheme to launch a crowd-funding campaign, in the fall of 2014, and it worked. I crowd-funded it, an advanced illness management and end of life care team from our rural community that raised $140,000.

Eric: Wow.

Michael: Yeah, crazy. And a few weeks later I walked into a donated office space in January and that's when we started. Now, two years later, we're taking care of 132 people in their homes, in our extended local environment. Our range is about 200 miles, in three out of four directions. We don't see anybody out in the ocean. In the other direction we see lots of folks.

Eric: Do you go up to the border with Oregon?

Michael: Yeah, we go all the way to the edge of the border with Oregon. Crescent City in Del Norte is the outpost on that corner of things. That's about 80, 90 miles north. And then to the east we've taken care of people as much as 150 miles east, almost to Redding. And then south, to Piercy past Garberville. There's a whole lot of California without any palliative care services. And we're extending our reach in every direction we can think of, with every trick in the book.

Eric: I'd love to talk about some of the challenges in delivering palliative care in rural areas. One of the things that you're bringing up is the distances that it may take to actually reach someone. How do you guys deal with that?

Michael: Well, we deal with it in one of two ways. We don't actually have a clinic or an office space where people come to us. We go to them, and we see them in one of two ways. One way is, we drive out to their house, and go through their front door, and sit on their couch, and deal with their dogs, and eat their cookies, and do home visits, in the traditional, powerful and amazing house call tradition.

But the other is the use of video conferencing. In that scenario, what we do is we get people set up with the technology, send them an email, they click on a hyperlink, and we do the same. And boom, there they are, face-to-face, looking through a window or a frame, at their practitioner. Whether it's their doctor, their nurse, there social worker, their chaplain, or even our community health workers.

So either we go to their home in person, or we do it in that virtual fashion, which is really an interesting new modality for doing this work.

Alex: Say more about how this works in terms of the technical nuts and bolts. Do you send them a software program to use, or do you actually send them, say, an iPad or a laptop?

Michael: Probably about two thirds of our patients have all the gear and gizmos they need to participate. And all they have to do is go to a site and download a simple app on to any device with a front-facing camera. So it's as simple as that. For them, they've got connectivity, they've got a gizmo, they generally know how to use it. For another group of our patients, we have to do a little bit more hand-holding. And for some people who don't have connectivity, either because they live off the grid, out 150 miles in the country side. In some circumstances, we'll just go ahead and throw a satellite dish on their roof, and lend them an iPad during the time that we're caring for them.

When you think about that kind of investment, it may not seem very medical, but at the end of the day, that three, four hundred dollars of investment can deliver unbelievable value to people who are too bloody sick to waste their time driving two hours to sit in some crappy waiting room and deal with old people magazines and clipboards shoved in their face and all the rest of that. All they really have to do once we get then set up is click on a link, while they're sitting on their couch. And all I have to do is click on a link, and I'm connected. The efficiencies are incredible.

Alex: So Michael, there must be some trade-offs between being able to be in person for palliative care consults, I think about the consults I do in person in the hospital. That sense of presence and being there, touch, is so important to the work that we do. And yet I'm sure there are ways in which you're surprised at what you're able to accomplish with video consults or tele-consults. Can you talk about that, and talk about what you do lose?

Michael: Oh, for real. It's pretty amazing what you don't lose. But what you do lose is access to some of the best home-baked cookies in the world. You lose the ability sometimes to just throw your arms around somebody that you've been working with over time. There's a particular physicality or tenderness that comes with just being together with people who are going through such hard stuff, and who are looking for guidance from a trusted relationship. And so some of that they give up. Some of the satisfaction that's reciprocal, I give up.

I gotta tell you guys something, it's pretty amazing! I had no idea that our work could be done in this fashion, until I tried it. So back in 2014, before I launched the crowd-funding campaign, I test drove the idea, and put it out there to the world through a little application that Google had for a minute, called Google Helpouts. It was this way of interacting with the world, and saying, "Hey, I've got something, and if you want it, you can connect with me directly and I'll share that expertise." So I put something up for end of life counseling, and over the course of a month, I got five or six contacts from people in all kinds of medical situations. And it was amazing, that in about 30 seconds, the technology itself just disappears. And there you are, in a very intimate relational space, a very unique relational space, that has it's own advantages, as well as the obvious trade-offs that we were talking about.

So, no, I can't drink their tea and coffee, and eat their cookies and deal with their dog, but what I do get is this crazy phenomenon where people don't show up so much as patients, so when a person need only click on a link and then be face to face in the comfort of their own home, in their own locus of control, with their doctor, neither one of us actually show up in our medically defined identities. They are just a person, sitting on a couch, and interacting with another person who might have something of value to them. And so there are enormous advantages to this new kind of medium, this new window, to connect with people.

For example, when a doctor goes to a person's house, that's a big deal. You walk through the door and you've invaded their space. There's a lot of people who have a lot of anxiety about what their house looks like, or how they keep things, or fear about their dog, or are you allergic, or what the heck. And that's not there. They get to show you what they want to show you. And if I want to see their garden, or what they keep in the refrigerator, or how they manage their medications, I ask them to do that. And if they want to show me, they show me. And if they don't, they don't. But they're sitting there in their fuzzy slippers, comfortable with their cats and dogs on their laps. And what is really remarkable, is that the encounter that I typically would take 90 to 120 minutes for, say an initial patient consultation, it actually tends to be done in about 50 or 60% of the time. Wrap your head around that.

Eric: Is there an issue ... Actually, I'm going to take a big step back. How does this all get paid for?

Michael: That's a very good question. There are some progressive innovative health plans, willing to partner with providers of palliative care, under the concept of value-based payment. In other words, they're interested in aligning what they do, the financing of health care, with what we do, the provision of health care, around some very simple outcomes that everybody's heard of. The health plan, and the provider, want the very same things. They want people to have improved quality of life. They want people to be more satisfied with their experience. And they also want people to use only the value of the system that serves them, and not excessive high-cost, low-value interventions. In other words, the health plan is very invested in saving money. Which is not all that hard to do in the care of people in the last part of their life. In the typical motto, so much uncoordinated, fragmented care occurs in emergency rooms in hospitals because people don't have an alternative.

They engage with us to provide palliative care to their members with the idea that they don't really care how much we see them, how many times we see them, in what fashion we see them, whether we see them with video conferencing, or face to face, or whether we see them through messages carried by pigeons across the community. They don't really care, they care about the outcome, and so do we. And so then we can construct, when we're paid for on a value-based, or a capitative per member per month basis. We can then construct a very personalized, very customized treatment plan, based on what makes sense for that individual person.

Alex: Michael, tell us how this integrates with hospice, and how it's distinct from provision of hospice in these rural, resource-poor settings.

Michael: Just like in other places, where hospice is available within a 50-mile radius of their headquarters, which is nearby where our headquarters is, whenever we have a patient who becomes eligible for hospice services, they've already heard from the palliative care service about the value of that specialized form of palliative care. Outside of that 50-mile radius, we do the best that we can, at a distance, for people, who wish to stay on their own homes and property, but don't have available hospice services. At least not through a Medicare-certified hospice.

Eric: What does your ... Do you have a professional team? Is it just you? What does your service look like?

Michael: Back in the day, back before I had this, when I was burning out, I didn't. I had a part-time social worker at the hospital, and we couldn't barely even come close to keeping up. That was the problem, I was looking to the hospital system I'd been a part of to resource the program and provide an interdisciplinary team, so the patients got what they needed and I wasn't going completely bananas all the time.

That couldn't happen from the inside, so the crowd-funding campaign, some pilot programs on value-based payment, and some other more mature contracts have evolved. So now we've got 17 people in our operation, which include another partner, a palliative care physician, four nurses, one of which is the clinical manager, two social workers, a chaplain, and three community health workers. All of us working in an integrated and coordinated fashion, to do what makes sense for about 132 people, at least today.

Alex: What are the main services you provide? If you had to summarize, we see mostly this kind of patient, and these are the main issues that come up that we address.

Michael: I'm just going to say, for all of our listeners, and for you guys, the main ingredient of palliative care is love and respect. That's what we provide, and we do that wearing our nurse hat, doctor hat, social worker hat, community health worker hat, etc. That looks like palliative care anywhere. Where we try to be very nimble and expert at the management of symptoms. Where we work on all the pesky social determinants like food, housing, that sort of thing with our social workers. We are, I hope, really good at communication and advanced care planning. We help our colleagues in oncology and other specialties with difficult transitions of care. We facilitate appropriate transitions to hospice as soon as that's the right next step for people.

We also do some pretty unique things. We have a set of projects that people go to the website and look under the tab videos. It's, by the way, If you look at the video section, you'll see that we've made a series of steadily improving videos that kind of get us out of the way, and give folks that we've cared for the opportunity to talk about who and what they are, and how they see what this phase of life is about. So we're doing some messaging.

In our non-profit organization, ResolutionCare Institute, we're doing primary palliative care education, using a very powerful model from the University of New Mexico, called Project Echo. And that's a way that we've taken our interdisciplinary team, and then engaged with community health programs, or community health clinics in Northern California, to teach them the basics of symptom control, communication, and advanced care planning, in this very dynamic learning community that sets us up as a hub, and them up as spokes, to go through a curriculum in palliative care, so that the primary care providers know the mindset of palliative care and how to approach some of the more common problems.

Eric: Like you mentioned before, access to palliative care in rural America is shockingly low, or, if not, absent. Are there things that palliative care providers, and really other providers ... Are there reasons why they should consider working in rural areas and delivering this type of care in rural areas?

Michael: Yeah. I'm sitting on the back side of the hospital, in a redwood forest, with blooming rhododendrons, on a sunny day, maybe a little bit rare sunny day here in Humboldt County. To be able to drive five minutes from work and be at my house, which is five acres in a redwood forest with a beautiful view, to raise my kids in this kind of environment, is non-negotiable for me. And then utilizing these technologies to connect to people at a distance, have allowed me to have a lot more freedom, and a lot more balance in my life.

Eric: Are there other things, like if I went up there and shadowed you for a week, do you think that would surprise me about delivering palliative care in rural areas?

Michael: We've got a pretty rough population of folks that are disadvantaged or really challenged by all the social determinants and stuff. We've got plenty of drug use up here, plenty of people that are homeless. There are certain qualities of that group of folks in our practice that are a little bit different than that group of folks in your practice. There's a lot more marijuana up here in Humboldt County, I guess you could say.

Eric: I've heard about that.

Michael: Have you heard about that? People have to look for the sense of place that makes sense for them, and for their families, and for their sense of how they want to live their lives. But I think I would let you come up here and find out for yourself. The other thing that we can do any time you like, is you can drop in from right where you sit, to participate and engage with our folks. One of the tricks that this technology allows, is that I can do a family visit with people from all over the country, in a way that's much easier than all of the wringing of the hands, and stressing out of emergency plane flights, all the rest of it.

So if I can, I'll tell you a little story about how I see telemedicine. Telemedicine 1.0 was a great set of ideas about 15, 20 years ago that came from big academic medical centers, like UC Davis and Washington University in St. Louis. Where they built buildings, put big bandwidth pipes, T1 cables and fiber optic pipes, and they laid them on the ground to connect to spoke sites in rural areas. They built these telehealth centers, and you would schedule people to go to the center to engage with the specialists that were based in Davis. And it totally proved that you can do good cognitive medicine using telemedicine. The problem was the barrier for entry was high, it cost so much money to build out all that stuff.

Well then these things called smartphones popped up about 10 years ago, and cloud-based computing, and bandwidth requirements became ubiquitous, it was just possible to do all kinds of things. Like, for example, I think the three of us on this podcast are in three different places, doing a high-quality audio encounter in real time.

Alex: Well, Eric and I are together.

Michael: Oh you guys are together. Okay, good. Well, you get the point.

Alex: Right, right. Theocratically we could be in different places.

Michael: So that's tele-medicine 2.0, and the people that have really been advancing that are organizations like Doctors on Demand, and Teladoc, and American Well; people who are really pushing this idea that you can do brief, episodic urgent care-like connections for sniffy noses and sore throats, and save people the difficulty of having to leave work, and take a half a day, and the cost of all that stuff.

What we're doing is what I call tele-medicine 3.0. And that's just taking this technology a step further to engage in longitudinal and more intimate relationships with people that have serious illness.

But telemedicine 4.0… I'll just tell you a story. I was called to the hospital awhile back for a 70 year old, who needed that typical late-in-the-course transitional conversation. This is a guy with diabetes and hypertension, and a history of a few strokes. He was also a Native American fellow with a long history of being very committed to his community. Anyways, he came in with pneumonia and sepsis, and he just wasn't making it, so I was asked to come in and talk with him. So I walk into the room, and in the room is his 93 year old mother, and three or four other generations, from babes in arms, to aunts and uncles and cousins. But at the end of the bed there was a cart, and on that cart was a laptop computer, and on that laptop computer was a video conferencing platform with five other members of the family, from places like Maryland, Los Angeles, Sacramento, one other place. In other words, the room was over-filled with a synchronous communication of all those family members.

And we did the thing, that you've done so times, and brought value to families to help them make that transition with a sense of resolve and on the same page. But the cool thing about it, and the reason that I say it's telemedicine 4.0, is that I didn't have anything to do with setting it up.

Eric: Do you think regulations are keeping up with the technology right now? 'Cause when I hear a family member having some type of video conferencing uplink up, I also think, oh my God, what are the HIPPA regulations on that?

Michael: The regulations are definitely not keeping up with the technology. So you just have to decide which kind of person are you. Are you a person that's going to ask for permission before doing useful things that are right there at your fingertips?

Eric: Or just forgiveness later.

Michael: Or forgiveness. That's me. You might have guessed that about me. I'm kind of a forgiveness guy.

Eric: Last question from me is, what do you think the field of palliative care nationally should be doing to improve access to palliative care in rural America?

Michael: I think that's a great question. The legislative and policy work that would have CMS catch up with the development of these kinds of applications of telehealth would be very, very valuable. I think value-based payments and outcome-based payments that bring together the partnership of payers and providers to solve real problems for rural America, that would be very useful. And I think that looking towards the intermediate future, building more opportunities for palliative care training. The PCHETA legislation looks like it has some life in a strange legislative environment in Washington DC right now.

But really I think the other part of it is related to knowing that we'll never have enough specialty palliative care providers, and that the real value of having an expertise, is not holding it as a value proposition, but sharing it. And palliative care has this unique opportunity as one of the only intrinsically whole person perspectives on the practice of medicine and the health care system. We need to share that up and share that out with all the other specialties in medicine, and engage them in finding their own satisfaction that comes when you actually look at the people you're dealing with as people, not as either sources of revenue or problems to solve.

Eric: Great. Michael, I want to thank you for joining us today. We're gonna have links to Resolution Care, to other things that we talked about, including the PCHETA bill, currently, hopefully going through the congressional steps to get it approved. And again, very big thank you for joining us today.

Michael: Thrilled. That was very fun to do this gentlemen. Thank for having me.

Eric: Great, Alex, do you want to close us off with another verse?

Alex: Sure.

Alex sings “From Great Heights” by Iron and Wine.

produced by: Sean Lang-Brown
by: Eric Widera (@ewidera)
Read more »