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.

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Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: And Alex, who 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 ResolutionCare.com, by the way, www.ResolutionCare.com. 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)
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Monday, April 24, 2017

Using Our Pink Friend (POLST) Appropriately: Please Help!

Learn more about the California POLST form

The National POLST Paradigm Task Force (NPPTF) has just released their updated “Appropriate POLST Paradigm Form Use Policy,” which can be accessed at http://bit.ly/2pJuRmt. So I’ll just start by disclosing that I am very fond of POLST (Physician Orders For Life Saving Treatment).

I believe POLST has made an appreciable and important difference in the lives of many patients and their families. The POLST paradigm is sometimes misunderstood, both by clinicians and members of the public, and I want to share some reminders from the National POLST Paradigm Task Force (NPPTF) about the appropriate use of POLST forms and their kin (MOLST, MOST, POST, COLST, the very catchy T-POPP, and others), now considered endorsed or mature in 24 states, and at varying levels of development in 24 more.

The main point is that, unlike an advance directive, POLST is not for everyone. And POLST is more than just a form in a chart, it’s a concept that invokes a diligent conversation (or more) between a clinician and a patient/family, then translates it into actionable orders.

Wearing my two related hats as a long-term care geriatrician and palliative medicine specialist, I have been a big proponent of the POLST Paradigm since I first heard about it back in the second millennium. In California, we borrowed heavily from the Oregon POLST form and worked extensively with a wide coalition of stakeholders with very divergent opinions about end-of-life care to come to a consensus before we got AB 3000 passed in 2008, with our POLST form becoming effective at the beginning of 2009. Since then, we’ve made some improvements (at least we think so), including changing some of the language (e.g., from “limited” to “selective” for the middle-ground option, and from “comfort measures only” to “comfort-focused treatment,” and adding a “trial period” of full treatment). We really like our pink friend, the POLST form!

I’ve been a nursing home medical director and a hospice medical director since 1995 (before it was fashionable or in demand to be a palliative care doc). One of the most meaningful things we do in our line of work is to help patients and families make informed decisions about the kinds of medical treatment they want or don’t want.

Back in the olden days, I would spend a good chunk of time at the nursing home bedside having these goals-of-care/advance-care-planning discussions, and often after the discussion, a decision would be made to forgo CPR in the event of a cardiac arrest. I would write an order and sign the “PIC” (preferred intensity of care) or “PIT” (preferred intensity of treatment) form required by the facility, and while the patient was within the four walls of the facility, the order was valid. However, as soon as the patient left to go home, it would be as if the discussion had never occurred. Or if the patient had to go to the hospital, the order had no authority. Many times, patients wound up getting treatments that were not concordant with their wishes.

POLST changed all that. I could spend that important time at the bedside, usually much appreciated, and then create an enduring document that was sent home with the patient and put on the refrigerator or bedpost (not secreted in a safety deposit box somewhere like most advance directives), and faxed to the primary care doc. It would also accompany the patient if they had to go back to the hospital—where usually, it is actually honored. POLST is practical, reasonably simple so that first responders can act promptly, and most importantly it allows patients to have their wishes respected. They can request the most aggressive treatment, or can request to forgo treatments. As long as they have decisional capacity, they can change their request at any time depending on their condition and other life circumstances or attitudes.

But back to that key point: POLST is meant for patients who are nearing the end of life. It is not designed to be completed by young, healthy people or even by elderly patients who do not have the expectation of limited life expectancy (although of course, for patients with very strong feelings about their wishes—whether it be for aggressive medical interventions or for comfort care, or something in between—it may be reasonable for a clinician to consider completing a POLST).

However, clearly, not every patient entering a nursing home—for example, a healthy 66-year-old who had a knee replacement and just needs a few days of rehab because she doesn’t have an available spouse or adult child to help her at home—should be asked to complete POLST.

Some nursing homes use POLST as a code status document that is considered part of the routine admission paperwork, which degrades the sanctity of the concept and runs counter to the POLST paradigm. In fact, some states have a requirement for nursing homes to complete POLST on every admission—a requirement that renders those states non-endorsed by the NPPTF.

One reason for this should be obvious: If a patient completes a POLST when reasonably healthy and chooses full treatment, including CPR—then loses decision-making capacity—it creates a potential conflict when a change in medical condition creates the need to change the goals of care. A family member or other agent is now faced with saying, “Yes, my mom signed yes to CPR 10 years ago when she had her knee replaced, but now that she has severe dementia and pancreatic cancer, I am certain that she would not want any life-prolonging measures, and she’d want to focus on staying comfortable.” That conflict may be both emotionally difficult for a family member and confusing to healthcare practitioners.

Since many patients do not designate a surrogate on any legal document (like an advance directive), a family member or other individual who knows the patient well is generally the person who helps us write orders that comport with the patient’s known and expressed wishes, or at least the type of substituted judgment that comes from knowing a person well. There is also the best-interest criterion when wishes are not known, which can be a morass—but again, a person who knew the patient when he/she was intact would be best situated to help us determine what would be in his/her best interest.

In fact, in some states, a surrogate who does not have formal legal standing (like being named in an advance directive)—even a spouse or parent of an adult—would not be permitted to change a POLST paradigm form in these circumstances. That would be extremely unfortunate in a situation like the one described above. It goes against the whole notion of surrogate decision-makers that we rely on so frequently in our work. We do not want people to be forever locked into being treated in a way that they would no longer desire, just because of a form they may have signed years ago when things were very different.

Another misconception I’ve seen recently in the literature and out in the field is the idea that “DNR/DNAR/AND” (do not resuscitate/do not attempt resuscitation/allow natural death) is somehow inconsistent with “full treatment” on a POLST form. GeriPal readers, please educate your colleagues about this important point! DNR does not mean “just let me die.” (Actually, please educate your patients and their families about this too.) Section A of the POLST (CPR preferences) applies when somebody has no pulse and is not breathing. In other words, in a cardiac/respiratory arrest. Or, as some would say, dead.

If the patient is not in an arrest situation, Section A does not apply. In that case, you go to Section B (medical treatment preferences). If it says full care or full treatment, that means yes, you intubate that patient who is in respiratory failure when CPAP fails. It is disappointing to me when my colleagues seem to struggle with this concept, and it feels like a bit of a failure on the part of our community to do robust education on these important nuances.

Clinicians, educators, academicians, everyone: I urge you to review and widely disseminate this policy document and the information contained within, among our peers and our patient population. It is vitally important, especially given the current political and regulatory climate, that POLST be utilized in an appropriate fashion, and not misused in a way that might create unintended harms to the patients we so conscientiously strive to serve.

Dr. Steinberg is a longtime nursing home and hospice medical director in the San Diego area, editor-in-chief of Caring for the Ages, chair of the Public Policy Committee for AMDA—The Society for Post-Acute and Long-Term Care Medicine, a member of AAHPM’s Public Policy Committee, and a consultant member of the National POLST Paradigm Task Force’s Executive Committee. He can be contacted at karlsteinberg@MAIL.com or via Twitter at @karlsteinberg.

Learn more about the California POLST form at CaPOLST.org

by: Karl Steinberg 
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Tuesday, April 18, 2017

Sean Morrison on the Current State of Palliative Care

Today's GeriPal podcast features Sean Morrison, Geriatrician and Palliative Medicine physician, director of the National Palliative Care Research Center and the Hertzberg Palliative Care Institute at Mount Sinai in New York.

We talk with Sean about a new report titled, "How We Work: Trends and Insights in Hospital Palliative Care." This report was co-produced by the National Palliative Care Research Center and the Center to Advance Palliative Care. The report summarizes the current state of palliative care practice in the US.

Key excerpts the podcast (full transcript below):
Sean: I think the biggest finding is that palliative care teams on average are seeing almost 5% of hospitalized patients, but some teams are seeing up to 15% or 16%. And the right number is probably somewhere between 7.5% to 15% depending upon the makeup of the hospital.

Sean: We've seen really a tremendous growth in the number of advance practice nurses that are in the field. We've also seen a growth, you know, an accompanying growth in terms in of the number of physicians. But where we, as you said, we still have a lot of room for improvement is both in social work and in chaplaincy. And it's perhaps not surprising that those are the two disciplines where they can't bill for their services. And I think a large part of the lack of growth in those two areas is because of finances.

Sean: And clearly what I would really like to see is that number of programs who have a board certified physician or advance practice nurse in palliative medicine be at 100% or at least 95%. I can't think of any other specialty where we would accept the fact that, for example, somebody is practicing cardiology and works in a cardiovascular institute but is not board certified in cardiovascular medicine.

By: Alex Smith, @AlexSmithMD

List 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 the Dr. Sean Morrison, who is director of the National Palliative Care Research Center and the Hertzberg Palliative Care Institute at Mount Sinai in New York. Welcome to the GeriPal Podcast, Sean.

Sean: Thanks, gentlemen. Good to be here.

Eric: And we start this off with our guest making a request to Alex for a song they'd like to hear.

Sean: Alex, could I have a song?

Alex: So I thought that in honor of you, Sean, who is a Beatles fan and made a wonderful joke about The Beatles and a group called The Beach Boys, I believe. They're some sort of historical group that was important in U.S. history, I understand.

Sean: You have a very good memory, Dr. Smith.

Alex: (laughs) At the recent Foley retreat, Sean was introducing Vince Mor, who is an esteemed palliative care researcher in his own right, and said, "Whenever Vince Mor publishes something, I feel like Brian Wilson (who is the front man for The Beach Boys) did when the Beatles published Sergeant Pepper's Lonely Hearts Club Band."

Eric: So let's hear a little of it!

Alex: So this is "When I'm 64" from that album. One of the few songs I can play from this concept album.

Alex sings “When I’m 64” by The Beatles.

Eric: That was great.

Alex: So we should dive into this report here, Sean. It's sponsored, as I understand it, by both by the National Palliative Care Research Center and CAPC, is that correct? The Center to Advance Palliative Care?

Sean: That is correct. Absolutely.

Eric: And the report is titled, "How We Work: Trends and Insights in Hospital Palliative Care." We'll have a link to the report on the GeriPal website. And really we're looking at trends between 2009 and 2015. Sean, do you want to give us, like, a brief overview about the report?

Sean: Sure, so this is a report that is based upon the National Palliative Care Registry, which is a joint product of the National Palliative Care Research Center and The Center to Advance Palliative Care, which is a voluntary database where programs throughout the United States input information about the structures and processes associated with palliative care delivery. And we've been collecting data over the past 10 years and this report really tracks some of the metrics associated with the growth of hospital palliative care in the United States.

Eric: You know, one of the first big findings that I saw was is that currently in 2015, 4.8% of all hospital admissions received a palliative care consult. And I was just impressed by that number, and per the report that number as increased from 2.7 of all admissions in 2009 to 4.8. Are there other things from this report that really stood out for you when you put it together?

Sean: I think there are a couple things beside that. Obviously as you know the growth in palliative care has been rather rapid in terms of the number of programs since, oh, 2005. And accompanying that has been a growth in the penetration of those programs into various hospitals. So first of all, I think the biggest finding is that palliative care teams on average are seeing almost 5% of hospitalized patients, but some teams are seeing up to 15 or 16%. And the right number is probably somewhere between seven and a half to 15 depending upon the makeup of the hospital.

I think the other thing that we've seen that is equally impressive is the growth of teams that now support a full interdisciplinary team of a physician, nurse practitioner or registered nurse, chaplain, or social worker - and social worker, sorry. And that that was a very small group of programs many years ago but is now increasing also, rather exponentially.

Alex: It's interesting there are a number of glass half-full glass half-empty story lines in here, aren't there? And I think there's tremendous, I was really impressed with the growth of interdisciplinary teams, and yet ... I'm flipping through trying to find it. Somewhere in here it says something like, "Of those teams," yeah, here it is, "Who are without a complete interdisciplinary team, 70% have no chaplain." So there's been tremendous growth particularly in the nurses as part of the interdisciplinary team, but there's still a lot of opportunity to increase chaplaincy support for palliative care teams.

Sean: Oh I agree completely, Eric. And I think one of the things we've seen is, exactly as you've pointed out, is that we've seen really a tremendous growth in the number of advance practice nurses that are in the field. We've also seen a growth, you know, an accompanying growth in terms in of the number of physicians. But where we, as you said, we still have a lot of room for improvement is both in social work and in chaplaincy. And I, it's perhaps not surprising that those are the two disciplines where they can't bill for their services. And I think a large part of the lack of growth in those two areas is because of finances.

Eric: Are there ways that we could address that?

Sean: I think there are a number of way that are addressing that. First of all, I think The National Consensus Project has pretty clearly stated that palliative care needs to be delivered by an interdisciplinary team that encompasses those four core disciplines: medicine, nursing, social work, and chaplaincy. That certainly not all patients need all of those team members, but all of those team members need to be available.

I think the moving that sort of idealistic consensus-driven document into actual practice is going to require things like accreditation. The Joint Commission now, in terms of their advance certification program, you can't have a palliative care team unless you have those four components and be certified by the Joint Commission. That's a step that we need to move forward with. That this is part, that we move palliative care from accreditation to certification.

The other piece that I think will help drive this is research. What clearly has helped promote the growth of palliative care in this country has been research that has demonstrated that it contributes to value. That it improves both patient quality of life and family well-being, at the same time doing so in a cost-effective manner. And I think when we look at, particularly spirituality, there is increasing evidence of the importance of spirituality to seriously ill patients and their families. There are beginning to be data about the impact of poorly addressed spiritual distress in that population, both on patient and on family well-being. And indeed some small data on it's effects on increasing health care costs. So I think we really do need concrete evidence-based data, which I think will exist and can be done, on the impact on both psychological and spiritual well-being on value in health care.

Alex: That's interesting. I think of my own clinical experience, anecdotally, sometimes there are days when we have no chaplaincy support or social work support. And we can do the consult but the quality of the consult is not as good. And I should also mention that, you know, a social worker could do the consult by themselves or the chaplain could the consult by themselves but the quality of the consult is not as good.

Sean: I couldn't agree more. We rely on the support of our social workers and our chaplains, both in terms of our patient care, but also in terms of the care of our interdisciplinary team. And that I don't think we could function as a palliative care institute without their input.

Eric: So the other thing I noticed is the demand for palliative care clinician seems really high. I read that in the report, 64% of palliative care programs are seeking additional staff. I think the nice part of where these trends are going, it sounds like the vast majority, 82% of physicians are board certified in palliative care, but when you get to advance practice nurses it's about half, registered nurses about half, social workers 30%, and chaplains 11. Part of that is that the chaplain's and social worker's certifications occurred within the last decade, but the advance practice nurses, they've had certifications well before even the physicians. But we're still not seeing a high percent of them being board certified.

Sean: Yeah, I mean I think you also put your finger on one of the major challenges for the field. Is that we don't have a workforce now that meets the current need for palliative care specialists across all four disciplines. And it is pretty clear that even though we are dramatically increasing the number of all four core disciplines who are entering the field of palliative care and becoming, as you said, board certified. We are still not going to meet the need. So what are we do about that?

And I think there are three key solutions, or three solutions that we need to think about. The first is we need to think about insuring that every clinician who cares for a person with serious illness has the core knowledge and skills to provide primary palliative care. So that we can use palliative care specialists truly as specialists. So that's the first thing that has to happen.

The second thing that has to happen is, I think we need to begin to use the data that we have to target populations that most benefit from palliative care services. And I hate to say the work triage, but it's really about matching patient need with the knowledge and skills that specialist care provides.

And then I think the third issue, and to me the most important issue, and this is, I think one represented by your blog, is that we need to get beyond the specialty silos that quote, unquote are palliative care and geriatrics, and really need to think about the care of complex, seriously older adults from a population health perspective. And that as long as we continue to think about these within silos of geriatrics, palliative care, palliative medicine, cardiology, we're not going to be addressing the needs of this population. And so the idea that focusing two fields, geriatrics and palliative care, both on the needs of this population, targeting the high-risk individuals for specialist level care and expanding primary palliative care and geriatrics so that we raise the floor or the basement of care for this population of patients.

Alex: That's music to our ears! (laughs) So you know, I wanted to move back to an earlier point, you said that the appropriate ... targeting palliative care referrals is an important step, that was point number two. And that earlier you said that the right proportion of hospitalized patients who receive a palliative care consult is probably between somewhere between 7 and 15%. I'm interested in how you came up with that number.

Sean: I knew you were going to ask me that. So it, I must admit, it's a ballpark estimate.

And it's an estimate based largely on the work of both your group out at UCSF, we call that Mount Sinai West by the way, and the work of Amy Kelly here at Mount Sinai who have begun to look at the size of the population that has one or more serious medical illnesses, an element of functional impairment, and or cognitive impairment superimposed on that. Because I think that is the complex target population that palliative care geriatrics needs to address. And when you look at those estimates, it ranges from somewhere from about 5% of the overall Medicare population, slightly lower in a Medicaid population, and obviously higher in a dual-eligible population. So I think, sort of, the bottom line is that 5%, but the reality is in hospitals you tend to get a higher population or percentage of patients with serious illness being hospitalized.

And so I think that number goes up, and it probably goes up to about 15, 16% and I say that because if we look at palliative care programs that have been in business for a long time, have a pretty extensive program, have good penetration in the hospital, they're seeing about 15 to 16% of the hospitalized population. So that's where my number, that's where my estimate comes from.

Eric: That's great. There's also an interesting piece about readmissions and that 18, 14% of palliative care patients were readmitted to the hospital in 30 days of discharge. And that, by way of reference, all-cause readmissions were about 18%. And that, the palliative care patients we're seeing are likely more complex, more disabled, more cognitively impaired, more frail, more seriously ill than the all-cause. So that 14% is probably, you know, the 18% benchmark is probably not appropriate comparison for that 14%, so actually, we're probably doing pretty well at preventing readmission, which is actually a huge issue for hospitals and health systems.

Sean: I couldn't agree more, particularly since hospitals are now being penalized for unwanted and unnecessary readmissions. And I think what this speaks to is the ability of palliative care teams to identify patient's goals, to match treatments to those goals, and then to create an effective and safe discharge plan that allows patients to be cared for in the setting of their choice. And for most people that is not the hospital, so providing that added layer of support when people leave the hospital and go home, I think helps tremendously in terms of preventing those unnecessary and unwanted readmissions, for example, for a pain crisis, for a breathlessness crisis, because you ran out of medications, because there wasn't enough support in the home to take care of somebody with Alzheimer's disease and related functional impairment. So I'm not actually not terribly surprised by that finding, although some of my colleagues are

Alex: So I got a question. You know, seven years from now when we're revisiting this in our next podcast together, Sean, what do you think the trends are going to look like then?

Sean: That's a really good question. So let me step back and sort of take it from, you know, sort of the beginning of our report and just sort of walk through what I would consider to be the big changes or the big trends. I am cautiously optimistic that what we're going to see is the complete interdisciplinary team moving from 44% up until well over two-thirds of hospitals. I think there's always going to be hospitals that can't support a full team, largely because of their size. That, you know, if you're a small hospital you may not have that type of patient volume, but I would like to see the complete interdisciplinary team number move above 50% and into the 60s and I think that ... I think that will happen. I think that's a realistic goal for us.

I also think that consistent with what we've seen from 2009 to 2015 that palliative, the number of patients who are going to be dying in the hospital, I think, I hope to see decline as we do a better job of allowing people to be cared for in the setting of their choice. I think the number of people we see with cancer is probably gonna, probably going to stay around 20, 25% because that's where, that's the number of deaths that occur because of cancer in this country. And clearly what I would really like to see is that number of programs who have a board certified physician or advance practice nurse in palliative medicine be at 100% or at least 95%. I can't think of any other specialty where we would accept the fact that, for example somebody is practicing cardiology works in a cardiovascular institute but is not board certified in cardiovascular medicine. So that's number two, is the full interdisciplinary team.

And then I think the other big area where I would like to see growth, and I expect to see growth is in the penetration rate. That, again, as we talked about earlier, we don't actually know the right penetration, but we know it's above 4% and we know it's probably less than 15%. So I would really like to see the number, the percentage of patients seen by palliative care teams increasing and then leveling off. Those are the big trends that I think we will be seeing when we're talking again in about six years.

Eric: So I'm just completely impressed with how our satellite campus in New York, otherwise known as Mount Sinai-

Sean: Yeah, yeah, yeah.

Eric: (laughs) Is a really, you know, putting this together and really the great work that you're doing. I really encourage all of our listeners to take a look at this report. There's a lot of detail in there, including for me, one of my favorite graphs was that actually what the team staffing looks like, this core interdisciplinary palliative care team staffing, based on bed size from 2009 to 2015, so less than 150 beds, 150 to 499 beds, and greater than 500 beds. And you can kinda see how you compare, your program compares to these other programs based on your hospital size. Again, really useful information. I think we can talk a lot about, "Wouldn't it be great to have this, you know, full interprofessional staffing," but what this graph reminds me of, is that even a full staff, like some of these are point three of a chaplain or point six of an RN on a team. And what is the right make up for different size hospitals.

Sean: I think that's absolutely critical, Eric, and as I think that you point out at the very beginning of this podcast, one of the things about this report is it gives all of us in the field a pat on the back to show us how far we've come, but it really lays out where we need to go in the future because we are clearly not there yet.

Alex: Great, so I got one last question. How many programs are in this registry and if people want to be included what can they do?

Sean: That's a very good question. We have somewhere between 3 and 400 depending upon what year you're looking at. And if you would like to be included in the registry you can go to www.registry.capc.org and you will come up to the front page where you can register your program and input your data.

Alex: Terrific. Should we end with another verse?

Sean: I would love another verse, Alex, thank you.

Alex: Feel free to join in in the singing.

Sean: I will spare your listeners.

Alex sings “When I’m 64” by The Beatles.

Produced by: Sean Lang-Brown
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Wednesday, April 5, 2017

A Geriatrician Reviews Cicero’s “On Old Age”

by: Jeffrey M. Levine MD, AGSF

As a geriatrician entering the twilight of my career, I look to the philosophers of my field for guidance on how to navigate my own later years. In addition to contemporary texts and journals I turned toward the ancients and discovered a gem in the writings of Cicero, one of the greatest philosophers of the Roman Empire. The work is entitled De Senectute – Latin for “On Old Age.” Cicero wrote this in 44 BC, the year before he was executed at age 63 by Marc Antony’s henchmen for his alliance with Julius Caesar’s assassins and political opposition to the rulers of Rome.

On Old Age is an optimistic discussion of the spirit of man’s declining years, exploring the relationship with nature and outlining strategies to maximize the enjoyment of life. Old age and death are considered natural components of humanity. Unfortunately he does not discuss the point of view of women, a reflection of Roman culture in which the female gender had lower status – unable to vote or hold political office and largely relegated to managing the home.  This flaw, however, does not warrant dismissal of the work.

Born in 106 BC, Marcus Tullius Cicero spent his life intertwined with the politics of Rome, and is considered one of history’s greatest orators. His philosophical writings profoundly influenced Western civilization, including 18th Century Enlightenment theorists such as John Locke, David Hume, and others. Most of Cicero’s philosophical writings were completed after the death of Julius Caesar, when he spent two years peacefully writing in his villa in the ancient city of Tusculum, dictating much of his work to his devoted assistant Tiro, his former slave.

Written in dialogue form, Cicero's friend Cato is chosen as the principal speaker. Dialogues were a common format in Greek and Roman philosophical writings, having been used by Plato and Socrates. Cicero chose Cato because he was a man who reached the age of 84. Cato addresses the inquiries of Laelius and Scipio, two younger men in their 30’s who seek advice on how best to grow old.  Laelius asks Cato:
“(Y)ou will have rendered us a most welcome service… since we hope, indeed wish, at all events, to become old, we can learn of you, far in advance, in what ways we can most easily bear the encroachment of age.”
Cato answers as a stoic – a school of philosophy holding that a wise man should be indifferent to both pleasure and pain, and submissive to natural laws. As such he welcomes the decline of sensual pleasure, replacing it with intellectual and aesthetic enjoyment. Underpinning his answer is that the quality of one’s old age depends upon investments made in earlier years, particularly in one’s health, bodily strength, friendships, and memories of “deeds worthily performed.” He firmly believes that old age has a rightful place in man’s life:
“I am wise because I follow Nature as the best of guides and obey her as a god; and since she has fitly planned the other acts of life's drama, it is not likely that she has neglected the final act as if she were a careless playwright.”
Cato cites old men such as Plato, who “died, pen in hand, in his eighty first year,” and others who were productive into their nineties and early hundreds. He compares old age to a brave and victorious horse who just won an Olympic trophy.

Through Cato, Cicero defines four reasons why old age appears to be unhappy: 1) It withdraws us from active pursuits; 2) It makes the body weaker; 3) It deprives us of physical pleasures; and 4) It is not far removed from death. He then addresses each reason, arguing for enjoyment and appreciation for old age, particularly in the area of intellectual enrichment:
“It is not by muscle, speed, or physical dexterity that great things are achieved, but by reflection, force of character, and judgement; in these qualities old age is usually not only not poorer, but is even richer.”
Cicero however did not know of dementia the disease, referring to memory loss in old age as superstition, as when Cato says:
“I certainly never heard of any old man forgetting where he had hidden his money! The aged remember everything that interests them, their appointments to appear in court, and who are their creditors and who their debtors.”
Through Cato, Cicero advises to live all phases of life to the fullest, guarding against regret. He recommends that all men “…make a proper use of his strength and strive to his utmost, then assuredly he will have no regret for his want of strength…. In short, enjoy the blessing of strength while you have it and do not bewail it when it is gone, unless, forsooth, you believe that youth must lament the loss of infancy, or early manhood the passing of youth. ”

In his discussion of death, Cato first expresses belief in the immortality of the soul, which was placed inside mortal men by the gods to care for the earth. However he concedes the possibility that the soul may indeed perish along with the body, but is still preserved in the sacred memory of words and deeds.

Whether or not the soul is immortal, Cato firmly accepts the phenomenon of death, with old age as the final scene in life’s drama. In his closing words of advice to his young friends he states, “For these reasons…, my old age sits light upon me… and not only is not burdensome, but even happy.” How different is our contemporary culture that abhors old age and death, where marketing and technology promote false promises of prolonged youth and endless life.

The practice of medicine in the Roman Empire was largely based on the Greek tradition of humoral balance, and relied upon herbal medicines, prayers, and some surgical procedures. Of course there was nothing in the way of artificial life support, a phenomenon based upon science and technology that was developed the 20th Century. Modern medicine is largely structured upon preservation of life at all costs – a philosophy that simply does not apply to many of our patients, particularly when it incurs needless suffering in advanced age. We can learn so much from Cicero’s outlook, not only with medical decisions to prolong life, but in how we structure our own lives in preparation for old age, and how we live it from day to day.

* * * * * * * * * * * * * * * *

For a complete copy of Cicero's On Old Age click here.

For a good reference on the life of Cicero Click here.  

For an engaging novelized trilogy on Cicero's life see Robert Harris's books entitled Imperium, Conspirata, and Dictator.

For an excellent introduction to the topic, see The Cambridge Companion to Greek and Roman Philosophy, edited by David Sedley.  

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Tuesday, April 4, 2017

GeriPal Podcast: Laura Hanson on Improving Advanced Dementia Care in Nursing Homes

Today's GeriPal podcast features Laura Hanson, Geriatrician and Palliative Medicine physician at the University of North Carolina, Chapel Hill.  Laura discusses her recent JAMA RCT of a goals of care intervention for nursing home residents with advanced dementia.

Here is a link to the decision aid, including video.

Key excerpts from the podcast:
Laura: That is followed by an in-person discussion. I want to emphasize that, because I think that a video decision aid alone without anchoring to the clinicians who are actually delivering care is not going to be as powerful.
We did have a number of family caregivers who said, "I can't choose between function and comfort." That, I think, tells us something about what families want from us and what they're hoping for for the care of somebody with late stage dementia. It allows us to think about the things that we do that might actually cause functional deterioration, like overmedication, or prolonged hospitalization with time in bed that then can turn around and result in a functional impairment that otherwise wouldn't have occurred. I take that to heart as a clinician.
We conducted this study in a time period and in a location when population health was not a priority. It's important to recognize that moving forward with the emergence of population health and with new quality standards for nursing homes that will penalize them for readmissions, as well as hospitals. This is a high risk, high transfer population, and there may be new incentives for physicians to become more involved in, at least, the transitional care of this advanced dementia population. 

By: Alex Smith, @AlexSmithMD

GeriPal Podcasts can be found on:


Transcript of the podcast:

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

Alex: This is Alex Smith.

Eric: Alex, who is our guest today?

Alex: Today, we have Laura Hanson, who is Professor of Geriatric Medicine and Palliative Care at the University of North Carolina, Chapel Hill. Welcome to the GeriPal PodCast, Laura.

Laura : It is an honor to be here in this beautiful place.

Alex: Laura, we usually ask our guests to start off with a song. Do you have a request?

Laura : I have a planted request for Carolina In My Mind.

Alex: Planted!

Eric: We would never ...

Alex: We'd never ...

Eric: Never!

Alex: Never, never. For our listeners, let's just be clear, that's fake news! Maybe ...

Alex: Maybe there was some discussion.

Laura : Let's be fair. One of my favorite songs when I'm traveling away from home.

Alex: That's good. Carolina In My Mind by James Taylor.

Alex, Ericand Laura sing “Carolina in My Mind” by James Taylor. 

Alex: Nice!

Laura : Thank you.

Alex: That's great. I think you're the second guest to sing along.

Eric: Yeah.

Alex: That's great. We admire your courage.

Laura : Oh, I thought it was a requirement.

Alex: No, no. It should be. Maybe going forward.

Eric: We only tell people after.

Laura : Oh, got it, got it.

Alex: Today, we're going to talk about the study that you published in JAMA. I think this came out online last year, but in print this year, is that right? Something like that. Published online November 28th, but post ... Anyway, this really terrific study in JAMA, “Effect of Goals of Care Intervention for Advanced Dementia, Randomized Clinical Trial.” To dive into this study, maybe first, could you tell us a little bit about why there was a need for a study like this?

Laura : Interestingly, the idea for this study came out of a previous study that I did, trying to address decision making about feeding in advanced dementia. When we did that study, where we were talking about a specific issue in advanced dementia, a lot of the people that we worked with, family caregivers and nursing home care providers said, "Please, do something about goals of care, because we can't really talk about feeding options, if we're not talking about the big picture."

Eric: What did you do in the study?

Laura : In this study, what we did was spend a huge amount of time in nursing homes with family caregivers and with people with advanced dementia. We identified a group of nursing homes in North Carolina that were willing to let us come in and do research there. We randomized those nursing homes into intervention and control sites. The intervention sites got a video decision aid about goals of care in advanced dementia, followed by a structured care plan meeting with the nursing home staff and the family caregiver, to talk about goals of care and how it might affect the treatment plan. In the control sites, we had a control video and a regular care plan process.

Alex: I want to dive into this idea of this video intervention a little bit more, because I think this is fascinating. There wasn't, I think, a whole lot of detail, as you'd imagine, in the written text about what that video intervention was about. You described what it was about, but there wasn't a lot of meat on the bones about what is this intervention? Could you tell us a little bit more about what the intervention consisted of?

Laura : Sure. We tried to create a technological intervention that would work in nursing homes. For those of you who don't work in a nursing home environment, this is an environment where Wi-Fi is not available. This is an environment where many healthcare providers, especially people like nursing assistants or frontline nurses are told, "Don't get on the computers."

What we did was develop a short, 18 minute video that could be delivered on several different platforms, so that it would be flexible enough to be available in the nursing home setting. In that video, we talk about what dementia is. We talk about what goals of care are. We talk about how choosing a goal of care is essential to frame a treatment plan. We tell three stories. We have three stories about three people with advanced dementia whose families chose a different goal in order to guide care and how those stories unfold.

Then we also talk about the role of the family decision maker for whom this video is really intended, and the challenges that they might face as they attempt to speak in the voice of the person with dementia in making these hard choices. That is followed by an in-person discussion. I want to emphasize that, because I think that a video decision aid alone without anchoring to the clinicians who are actually delivering care is not going to be as powerful.

Alex: Right. That's so helpful to have a clear picture there of what the content of the video is. When you say, "There are three stories," I could image that one would be a comfort-oriented approach, exclusively. One might be some sort of limited interventions, and one might be focused on prolonging life as much as possible. Is that the idea of the three different pathways there?

Laura : That's, basically, the idea, except for that middle pathway, which some people call limited intervention, and for those of you who use a POLST paradigm, that's often the language that's used. We found that language when we were developing the video to be too negative. It sounds like taking away, which is something that I have learned not to do in decision making with family caregivers. Instead, we described that middle pathway as a focus on function. Being lest concerned about life prolongation, perhaps somewhat less concerned about comfort, but concerned about supporting the function of the person with dementia.

Eric: I had a chance to actually watch the video and the way it's presented, the middle one, the function one sounded quite reasonable ...

Laura : Attractive?

Eric: ... for most people, including potentially those who want to focus more on comfort. You can imagine that it's attractive. "Oh yeah, I'd love to see my loved one regain some function." For people with advanced dementia, how realistic is that pathway? What did people actually choose?

Laura : Interestingly ... I appreciate your characterization of that middle pathway, and I do think that there are a lot of families who are interested in something like a middle pathway for dementia care, but the reality is that two thirds of these families chose comfort right upfront. They chose comfort as their top priority. By the end of the study, it was a significantly higher number, more than three quarters choosing comfort as their top priority.

We did have a number of family caregivers who said, "I can't choose between function and comfort." That, I think, tells us something about what families want from us and what they're hoping for for the care of somebody with late stage dementia. It allows us to think about the things that we do that might actually cause functional deterioration, like overmedication, or prolonged hospitalization with time in bed that then can turn around and result in a functional impairment that otherwise wouldn't have occurred. I take that to heart as a clinician.

Alex: I wonder for our listeners, is it possible to view this video?

Laura : It is.

Alex: Is it available online?

Laura : It is. This was developed with your tax dollars and is freely available. It's currently available on the UNC Palliative Care website. People can look at it there. It's available on Vimeo, you can just search Dementia Goals of Care. It's available, or it will be available, I should say, it's going through the clearing process now on the Ottawa Health Research Institute website. That is the largest clearinghouse for decision aids anywhere in the world.

Alex: We'll have a link on the GeriPal Podcast to the video. The decision aid ... the structured interview or what happens after the video, is that available?

Laura : That will be available. It is going through the Ottawa process. Once it goes through the Ottawa process, it will be posted on their website. It's a guide for a structured decision that, when you do see it, you will think is quite simplistic, but basically asks that the conversation begin with a description of the person with dementia themselves and the family's understanding of their health state. Then a discussion of the goals options, followed by a discussion of the implications for treatment plans, so fairly straightforward.

Eric: Did it work?

Laura : We think it did. The intervention was very exciting to deliver, very engaged family caregivers with it. I take that to heart, because it has be acceptable and interesting for them. Basically, what we found in terms of the outcomes, our primary outcomes were focused on the quality of communication and decision making itself. No matter what is chosen, is the experience of communication improved by this intervention? The families said that it was. That overall, the families with the intervention experienced a better quality of communication with nursing home providers, and specifically experienced better quality of communication about end of life concerns.

The families in the intervention group also felt that they and the nursing home staff were in stronger agreement on the primary goal of care that was guiding the treatment plan, which is helpful. It impressed me, because there were still, in the control group, a significant group of people who felt that they weren't on the same page. That's pretty poignant to feel about someone you love who's being cared for in a nursing home.

We also found some downstream effects of it. Some of them surprising. Some secondary outcomes that we didn't particularly expect to affect. One was that we saw in the chart reviews, there was actually more palliative care content to the treatment plans for the intervention group, so the nursing home staff actually did more in modifying treatment plans than we expected.

Alex: What was included in the palliative care content?
Laura : Palliative care content for us, which is something that I had to develop a measure for, is asking if 10 different domains of palliative care are addressed anywhere in the treatment plan. Five of those domains are specific treatment decisions that are relevant to dementia care and five are domains of palliative care, like physical symptom management, emotional distress management, spiritual caregiving. We saw an increase in that content.

The more downstream consequences were that we saw the intervention participants actually more frequently had a MOST form, which is our version of the POLST completed. We'd never ever in the intervention mentioned POLST. We gave no instructions in that realm, but the goals of care decision aid fairly easily tracks. We had a number of the nursing home staff who were in the intervention sites say, "Hey, we could use this in order to complete MOST forms with families." Then we also saw a reduction in hospitalization for this population with the intervention, which again, we didn't particularly expect, but we're excited to see.

Alex: And yet, when Ericasked, "Did it work?" You said, "We think it did." Are there some aspects in which the study surprised you and ways in which it didn't work?

Laura : Some of the things that were not affected by the intervention were in the areas of general satisfaction with care and the management of symptom distress. When we asked families, "If either of those things changed or improved with the intervention, we didn't see anything." That lack of effect is something that I'm now thinking about a lot in research moving forward. Thinking really seriously about how we can help people who have advanced dementia actually experience better comfort and experience better care for symptom distress. I think that's an area that's really untapped in dementia care.

Eric: Who was actually involved in these conversations? Because in many nursing homes, physicians are not often present.

Laura : That was true here. The leadership in nursing homes is just what it sounds like. It's nurses. Nurses, very typically, led these conversations, and social workers were not far behind, very much involved. It's very powerful, if a nursing facility also has an advanced practice provider, so a nurse practitioner, or a physician assistant who's on site. If they were, they would typically be involved, but that's the minority of nursing facilities.

Physicians, I'm sad to say, were absent. We could not, despite a concerted effort in the study protocol, to notify physicians when their families were participants, to notify physicians when these meetings were taking place. I have to say I know some of these physicians personally, but for them this is outside that standard of practice so far that it was not possible to change that. We didn't predicate the intervention on physician participation, but that is another area for our future work. Thinking about how physicians can become more involved.

Eric: Were they involved in the most sightings?

Laura : Yes.

Eric: Somehow this got back to them.

Laura : That is correct. That's often how nursing home care works, where nurses are frontline. If nurse practitioners or PA's are available, they're also frontline. Decision making takes place and physicians back that decision making up.

Alex: Reminds me of hospice. Nurses, frontline say, "I need this medication, can you sign these prescriptions?" Yes, doctor signs them. They're back line on the front lines. It's interesting, because there's two sides to the physician involvement piece here. On the one hand, they weren't involved, and there may be opportunity for an even bigger effect, if they were involved and were able to communicate effectively.

On the other hand, this is real world, because most physicians aren't involved in nursing homes. If you had all of your physicians gangbuster involved, then it might have raised questions about how generalizable is the study? Maybe these are some handpicked academic affiliated nursing homes, or something that are quite different from other nursing homes around the country. There's some interesting angles to that aspect.

Laura : That is true. We designed it to be delivered in real world settings and these are not academically affiliated nursing homes, for the most part. They represent a very typical spectrum of nursing homes from some that are exceptional and have a strong investment in dementia care, to many that are very typical, ordinary nursing homes and match national standards, but don't go above that.

I do want to mention one other thing about the physician involvement, though, that's interesting to think about for the future. We conducted this study in a time period and in a location when population health was not a priority. It's important to recognize that moving forward with the emergence of population health and with new quality standards for nursing homes that will penalize them for readmissions, as well as hospitals. This is a high risk, high transfer population, and there may be new incentives for physicians to become more involved in, at least, the transitional care of this advanced dementia population.

Eric: I can imagine that brings up that tension, as far as what outcomes we should be looking at. Your primary outcome what the quality of communication. I think, for healthcare systems, what they're probably more interested in is potentially satisfaction, but realistically transfers to the hospital care that is expensive and may not offer a whole lot of benefit to individuals with advanced dementia. How should we think of when we're looking at these studies, what outcomes are the most important to look at?

Laura : Wasn't it nice that we had an impact on several different outcomes? That was helpful. That being said, I have chosen to put shared decision making front and center. I think that's really essential for people who do research in this area, as well as for people working in clinical practice with people who have later stage dementia. If we don't get the shared decision making right, we cannot impact hospitalization, at least not in a way that's healthy and sustainable. Because if we don't get the shared decision making right, then what we're doing is simply working out a mechanism to, apparently, take something away from people with advanced dementia.

I would argue that the real goal is to anchor the care of people with advanced dementia in nursing homes with higher and higher quality care there, so that the idea of an emergency department as the only source of relief from distress is eliminated from the repertoire. Shared decision making has to take place first, before those kinds of choices can be meaningfully made. It's not to say it's the only outcome that matters, but it has to be part of the package.

Eric: This is terrific. Taking a step back, bigger picture. What do you think is the direction that nursing homes need to move in order to make a palliative approach to care the standard approach in nursing homes for residents with dementia? If you agree with that statement.

Laura : I do agree with that statement. My wishlist is very long.

Eric: Right.

Laura : I'm a little worried about my answer running over time for this podcast. I think one of the most essential priorities ... and I just mentioned this, is to enrich the nursing home environment itself, which is both the home and the primary source of healthcare for most people with late stage dementia in the U.S. To enrich that environment with palliative care expertise. There are a lot of different ways that we might think about doing that. One way is to have palliative care consultation that's robust and readily accessible in that environment. Very few places anywhere in the United States have that yet, but there are places that are working on that.

Another way to do that is to make palliative care quality metrics more of a focus for how nursing home providers are rewarded and supported. Some of that's starting to occur, as well. Then the third way to do it is to think about really lifting the skillset in the nursing home staffing profile, so that can be done through training, although that's fraught, because the staff turnover rates in many nursing homes are well above 50% per year.

Eric: Wow, that's high.

Laura : It's really ... it means that education, literally, exits the building.

Eric: Yeah.

Laura : Training built with systems changes may be successful. I think more viable is to actually place a higher level practitioner in that environment. There's a good amount of research that says, when advanced practice providers are available, people who can do advanced care planning, who can do more skilled medical assessment and who can do prognostication, which is unique to advanced practice providers and physicians, you get a lot of the outcomes that you want.

Eric: Yeah.

Alex: Let's say I'm a nursing home, I'm listening to this podcast and I really want to try out this video. Do I have to wait for the Ottawa ...

Laura : No. No.

Alex: Give me a couple of steps of what I could do.

Laura : Yeah, a couple of options. One is to use it directly off of Vimeo right now. That's perfectly fine and available. Another is that people can contact me directly, and because of the difficulty of delivery of even video across the internet in nursing homes, I'm happy to send ... oh, this sounds so old-fashioned, a CD-ROM, a DVD, a paper copy.

Alex: Betamax.

Laura : Exactly. Exactly. Because that may be, frankly, what education specialists in nursing homes need in order to be able to use this material, and we're happy to provide it.

Alex: Wonderful.

Eric: That's great. Did you work with the other folks who are making advanced care planning videos around the country, like Angelo Volandes?

Laura : I am doing some work with Angelo now, but I didn't at the beginning of this project. The interesting thing really is the technological limitations in nursing homes and wanting something that was very low cost, very low health literacy, which is very important in the research environment. It's another long discussion, but basically, in the nursing home environment, you need to pay a lot of attention to low health literacy in order to be successful, and wanting something that can be developed in a way that it could be delivered in this very simple way. Yeah, now Angelo and I are collaborating and doing some work together, which is exciting.

Alex: What's the next step for this research?

Laura : What we're doing now is actually taking to heart some of the failed outcomes, the area of lack of effect on symptom distress. I'm working on a model project of dementia palliative care for individuals with late stage dementia who land in the hospital. We're testing that model to see if we can have some impact on some of the outcomes that we were not able to affect when we focused exclusively on goals of care as our primary intervention.

Eric: Great.

Alex: Great.

Eric: Any other questions?

Alex: Should we have another verse?

Eric: That sounds wonderful.

Alex: Let's do the one with the word dying in it.

Alex, Eric and Laura sing “Carolina in My Mind” by James Taylor.

Produced by: Sean Lang-Brown
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Saturday, April 1, 2017

Make April Fools Great Again

In a shocking turn of events, early this morning President Donald Trump posted the following tweet:

In what can only be described as utter chaos inside the beltway right now, what appeared to be an impromptu press briefing (although likely long planned out), the White House Press Secretary, Sean Spicer, elaborated on the joke: “We nailed it!  Period”

Apparently, Paul Ryan was also in on the joke, as he was quoted as saying: “You should see the looks on your faces.  Priceless! Do you really think that we want to repeal the ACA and make millions of people lose their insurance?   For god sakes, we are the party of family values.”

Pundits from across the political spectrum are hailing the impressive stunt.  Sarah Palin was overheard saying “I thought my April Fools’ joke of Death Panels was good, but this.  This was impressive.”

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