A Strategic Path Forward for Hospice & Palliative Care: Ira Byock, Kristi Newport, Brynn Bowman

Eric 00:38

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:43

This is Alex Smith.

Eric 00:44

And Alex, we’ve got a lot to talk about today. We’re going to be talking about a white paper that one of our guests wrote on a strategic path forward for hospice and palliative care. Potential future for the field. Who do we have on to talk about this paper with us?

Alex 01:02

And the author of that paper is with us. That’s Ira Byock, who’s a returning guest at GeriPal. Ira is a palliative care doc. He’s the author. He’s one of the founders and past presidents of the American Academy of Hospice and Palliative Medicine, and he’s joining us from Missoula, Montana. Ira, welcome back to the GeriPal Podcast.

Ira 01:22

Thanks so very much. Thanks for doing this. It’s a pleasure to be with you.

Alex 01:25

And we’re delighted to welcome Kristi Newport, who is a palliative care doc and chief medical officer of the American Academy of Hospice and Palliative Medicine and also chief of palliative care at Penn State Health. Kristi, welcome to GeriPal.

Kristi 01:38

So happy to be here.

Alex 01:40

And we’re delighted to welcome Brynn Bowman, who is chief executive officer at the center to Advance Palliative Care. Brynn, welcome to the GeriPal Podcast.

Brynn 01:49

What a thing, privilege, and a pleasure to be hanging out with you guys.

Eric 01:53

So we got a lot to talk about, kind of where we are with hospice and palliative care. Where do we see things going? But before we do, Kristi, do you have a song request for Alex?

Kristi 02:04

Of course I do. And I. I picked the song. We can do hard things. This is in my rotation of music that I listen to when I’m leaving. A really difficult day that I just belled out in the car. But, um, I think specifically for this podcast, you know, I was reflecting on the fact that today’s leaders were trained by people like Ira, who were trailblazers and disruptors.

And in my 17 years of practice. And in my 10 months in the role of CMO for HPM, I’ve learned that the folks who are leading the field now are just as passionate and they’re just as willing to do hard things and they’re doing hard things every day. So I think this song exemplifies my confidence that we are going to continue to work together to do the hard things to ensure good, good quality evidence based serious illness care for our country.

Alex 02:55

Great choice. I love this message. Here’s a little bit.

Alex 03:04

(singing)

Eric 04:26

That’S wonderful, Kristi. Who sings that?

Kristi 04:29

Tish Melton, a young singer songwriter.

Eric 04:32

Oh, that’s wonderful.

Alex 04:34

Thank you.

Eric 04:35

Okay, we’ve got a lot to cover in our time together. I’m going to turn to Ira first. Ira, we heard that you were a founding member of HPM. You were a board member, you’re a past president. You’ve created amazing things in palliative care. Why did you decide to write a white paper about hospice and palliative medicine and particularly a strategic path forward and talking about maybe some of the problems that we’re having. Why this paper and why now?

Ira 05:10

You know, this is like everything else I’ve written, I think, somewhat therapeutic for myself. This is about self care. I’m well into my fifth decade in this field. I remember very clearly the people who brought, who met together to create this field. The reasons we did it, we were worried about the care that seriously ill and dying people were receiving across the country and our own institutions. But. But in our own communities, we saw this denial of death rob people from any quality of life during the time that they were ill or caregiving or dying.

And we wanted to do something about it. And we came together and we imagined this field into existence by responding to need, clinical need, but also the cultural need situation, which was described well in Ernest Becker’s Denial of Death, where death, anxiety or death, fear of death is underlying so much of anxiety in our culture. And we came together and we did something I think very creative and positive. It was an act of Love, frankly, in the world, to commit to the best clinical knowledge and skills, using the best evidence out there, and to create programs to provide access to services by clinicians who are specially trained or otherwise experienced and dedicated to caring well for whole persons, for human beings who are seriously ill, or caring for someone they love who is seriously ill.

And we’ve done so much of that. I mean, I’m breathless at all that we’ve accomplished as a field. I don’t need to go through the accomplishments, but basically hospice and palliative medicine have not just shown that we can care better for people who are seriously ill and dying. We have shown that we can care much better for seriously ill and dying people in ways that are both feasible and affordable. And that’s a lot to celebrate. But as I look at where we are as a field, honestly in this my fifth decade, I think we have not in any regard succeeded. When you look at, from a public health perspective of the experience of seriously ill and dying people, care is extremely good in the best hospice programs, in some of the best academic mostly or large health systems that have adopted and have to some extent integrated palliative care within mainstream healthcare.

But for the average American, you’re at risk of not getting expert care, of having your and your family’s not only medical needs, but personal needs unmet, and of frankly suffering unnecessarily during this incredibly vulnerable time of life. So I felt that first solutions are possible if you understand the root causes. And I decided just as an act of self care, I was either having to go into therapy or I was going to write this damn thing and put it out there. What are the reasons we are still in this predicament and how do we get from where we are to what was the bright promise of this field now 50 years ago?

Eric 08:35

Yeah, Brynn, I wonder if I could turn to you. CAPC has done a lot of work around figuring out where is palliative care right now in academic, non academic hospitals. Is what Ira is saying kind of ringing true to you?

Brynn 08:49

You know where I agree completely with Ira is that we’re at kind of a pivot point in the field. And I guess the way that I think about it is like maybe we’re at a moment of going from Palliative Care 2.0 to Palliative Care 3.0 if 1.0 was iron. And you’re, you know, colleagues, pioneering colleagues, Ira, looking around and saying we are really leaving patients in the lurch here and we need to develop a care model to do something about it and 2.0 was grow, grow, grow. You know, build the number of programs, get on the scene in a serious way such that we could start to develop an evidence base, start to carve out our place in US Healthcare.

Then I think now we’re at this moment and Ira, I’m grateful to you for really starting this conversation or jump starting this conversation of, all right, we’re here, we’ve built the programs. There’s this remarkable track record of growth, fast growth over 30 years. And now how do we standardize, how do we safeguard quality? How do we really integrate into the fabric of US Healthcare while retaining that spirit of activism and of change making that launched the field in the first place?

Eric 10:04

That’s wonderful, man. I think we’re going to be talking about touching base on all of those aspects. I want to turn to you, Kristi, first, before we do. Is it ringing true to you, too?

Kristi 10:13

Absolutely. First, I appreciate, Ira, hearing you celebrate because I know sometimes when you see the problems, you have to pour so much of your energy into identifying problems. So I’m really glad that we were able to start the conversation with celebrating the amazing progress, the amazing good work that’s happening in so many places. I often, like, Brynn, think about this in that, you know, it took a long time to get a seat at the table, and now the people that are entering the field now have a seat and don’t even remember the time that they didn’t.

Right. But now we’re making sure that we know which fork to use, we’re using it appropriately, and that everybody gets a seat at the table that should. And so we have a lot of opportunity there. You know, we’ve made some mistakes over the time and we have opportunity, but we do have, gosh, so many great things happening. So, you know, doing. Focusing our work to continue those great things while we’re fixing the mistakes or opportunities is really where we’re looking.

Alex 11:14

Yeah. So if I could interject just to briefly summarize what I’m hearing, I was at like, oh, they just came out with Spinal Tap 2 recently. Right. You know, like, in terms of alarm bells, he’s at an 11 on a scale of 1 to 10. He’s nodding his head. So I think that’s right. Whereas Brynn, I hear more like we’re shifting. It’s a time of change. We’re moving from, you know, Hospice Palliative Care 2.0 to 3.0, but sounds like there might be opportunity to in that shift.

And from Kristi, I’m hearing that we need to celebrate all the tremendous strengths that we have and while correcting some of these, maybe smaller in scope, errors and issues. And I see Kristi nodding there and I see Ira shaking his head no. So it seems like, you know, we’re on different pages here about where the state of concern.

Ira 12:05

Can I just say, I am at an 11 and it’s not just academic. I see all the remarkable things going on, but the organizations that should be seeing this from a public health perspective and, and should be acknowledging the dangerous gap between what we could be doing as a health field and as a field of hospice and palliative medicine, but as a larger healthcare sector in the United States. And what we are doing is huge. And it’s not an academic thing. When you’re 74 years old and you’ve been in a physician for a long time, your friends who are seriously ill call you and they ask for your advice and help. I have at any given time right today, I probably have five really close friends or relatives who are seriously ill.

I worry about them. I can tell you stories if we have time to do that, about trying to get people palliative care, and it’s just not available. And I love CAPC. I mean, I love and the Academy is my professional home. These are not organizations that I’m in tension with in any regards. But CAPC’s report that says that 80% of hospitals over 50 beds have palliative care. I’m sorry, that’s not my experience at all. And some of those, that data is self reported and some of those programs are palliative care in name only.

And it hurts my heart and it literally, I lose sleep about my close friends and relatives who aren’t getting the support they need and are getting frankly, pretty lousy communication and overall care from their oncologist or, you know, cardiologists or whatever.

Eric 13:47

So let me get the. Let’s start off with the problems and we could talk about solutions. Let’s see if we agree on the problems. What I’m hearing from you, Ira, is let’s focus on palliative care and then we’ll focus on hospice from a palliative care perspective. There are many programs that don’t have palliative care if they do have palliative care.

You worried it’s palliative care name and only. It’s not, you know, the interprofessional team that we rah, rah, rah all the time my wife’s grandmother was in hospice, got a palliative care consult at outside hospital, which was done By a pharmacist who I don’t think had any palliative care training. That was the entirety of the palliative care team. Am I summarizing or are there additional things that you’re worried about when it comes to palliative care?

Ira 14:27

I had a very close friend whose 94 year old mother had metastatic cancer, had had a great run with monoclonal therapy. She started to deteriorate, was in a world of hurt, GI problems and all that was admitted to a very good hospital in upstate New York and the Hudson Valley. I’m certain that it’s self reports having palliative care and they asked for a palliative care consult four times over the 10 days she was in the hospital. Nobody ever came by. So that’s not unusual in my personal once removed friends and family’s experience. That’s what I’m talking about.

Eric 15:09

And I think it’s a challenge, right Brynn? Because I mean now I’m in my second decade, end of my second decade doing hospice and palliative medicine. I remember my first year and also in med school and elsewhere where it was really non existent in a lot of places. How do you think about kind of where we are and are these concerns resonating with you?

Brynn 15:31

Completely resonating. We’ve at CAPC pulled the field every year in our palliative pulse survey. And there is so much moral distress that comes out of those responses from palliative care professionals because they are well aware that they do not have all of the resources that they need to really address all of their patients needs. So that moral distress completely resonates with me. And I think about it kind of in two ways. One is what is within the sphere of influence of the leader of a palliative care program and that is being absolutely savvy about the outcomes that their stakeholders are looking for, whether that is the C suite or a health insurance plan.

That is being absolutely savvy about quality measures, payment dynamics, all of those factors that influence the reality of resources for a program. It is not okay for us as a field now to say this is the right thing to do. So everybody should agree with me. No, we need to be able to make a really sophisticated case in a really complicated environment that is losing resources all the time. So that is within the sphere of influence of program leaders, as is being really, you know, the other thing that causes moral distress that we hear so much about is just less than healthy team dynamics. And again that is in our sphere of influence. And then the other Way that I think about this is it is the responsibility of CAPC, of AHPM, of HP, and of our national organizations to be doing everything that we can to try to pull those levers that change the conditions that palliative care programs are working under. And that means policy. That means workforce development. That means. And I know we’ll go here, but that means thinking about what are the program standards that differentiate a quality program from one that is not really doing palliative care?

Eric 17:27

Yeah. Chris, did you agree?

Kristi 17:29

I do. I think Brynn is just starting to touch on that. The complex factors, Ira, your friends and family, you know, the same thing, I think has probably happened to all of us and professionally and personally. You know, we see that people are not always getting what they need. It’s so complex. And I am so encouraged by being surrounded by people who are seeing those opportunities and areas, doing work in those areas to try to make the change, but not to lose the ground that we’ve had that we’ve already gained, whether it’s in the workforce development policy, payment mechanisms, is a huge opportunity, you know, where we. We are already making progress. So I do agree it’s a multifaceted and complex work that, you know, it’s more than Ira could put into 13 pages.

Eric 18:19

Yeah, right.

Kristi 18:21

But that’s why we’re here talking about it in a bigger picture.

Eric 18:24

I got a question. You know, Alex and I do want to do a podcast in the near future on palliative care light. Alex, how would you define palliative care light?

Alex 18:33

Yeah, palliative care light is like I was talking about hospice being hospice in name only. It’s like palliative care in name only. So it’s that sort of equivalent that we heard some very concerning stories at the CAPC meeting in Philadelphia that Brynn invited us to and from people, you know, not at the meeting itself, but at the bar at night when you’re having bar, having drinks with people who are working in for profit palliative care industry. And they describe some of what they’ve seen and it’s really concerning. You know, like, that’s Palliative Care 3.0.

Eric 19:09

That’s the concern right there, right?

Alex 19:10

Yeah, that is.

Eric 19:11

What were you seeing, Alex?

Alex 19:12

Yeah, like, you know, untrained person asking seriously ill patient, what are your goals of care? Like, nobody asked that. That’s like an elementary training. We don’t actually ask that question.

Eric 19:24

But that’s how they’re getting. That’s the, that’s the palliative care that.

Alex 19:27

They’re getting or they Have a checklist of questions with no thought about responses and interaction. So that’s a concern. We’re going to have a podcast about that. But I kind of think we should balance it. Maybe have it be concerns about palliative care, but also the opportunities for innovation there too, because I think that’s real.

Ira 19:45

So I just want to wedge in here. We could talk about the problems for a long time and we shouldn’t stop right now. But, but there are solutions to this. And I, I think the most provocative part of my white paper was in actually focusing on what we could do to get back on course and to, and to achieve this bright potential that this field started.

Eric 20:11

Let’s do that. Because if, if. No, no, I think it’s a good time because if people want to hear has hospice lost its Way? We have a podcast on that. We’ll have it in our show notes. It’s called Help Hospice. Hospice Way. Ira’s on it. Joe Shega was on it. Love Joe. Loved his passion on that too. Highly encourage everybody to listen to it. But I mean, if you’re working in this field, you’ve seen kind of the proliferation of hospices and some of the concerns over that and the heterogeneity like this, the variation in hospice quality is huge, not unsimilar to the variation that you see with palliative care programs out there.

I feel like palliative care is like it’s younger than hospice. And we’re seeing that, that, that this for profit thing with Hospice happened 10 or 20 years ago in the big boom. And now we’re starting to see it in palliative care. So some of the similar issues. So, Ira, you laid out a path forward. You have four steps. But before the four steps, you had a zero tolerance for something. What was that zero tolerance for?

Ira 21:14

Well, just zero tolerance for either fraudulent or obviously bad care that tolerates unmet needs of seriously ill and dying people. Those of us in the field of hospice and palliative care often know about those programs before they get prosecuted or otherwise make headlines. Right. And I think we have to normalize within our field that it is the responsible thing to do to call the Attorney General’s hotline and just say, I am worried about this program. I can tell you in, in Orange county and LA county and Ventura county, the places that I, I have a lot of colleagues and friends, they know about the programs that are dangerous or just purely fraudulent and we need to start turning those programs in. You know, Rob Bonta, the Attorney General of California, has A hotline.

Eric 22:07

Let’s call it 1-800-Medicare. If you ever see any Medicare abuse or fraud, 1, 800, Medicare. Easiest way they can rem. What’s the number, Alex?

Alex 22:16

1, 800, Medicare.

Eric 22:17

1, 800, Medicare. So, Ira, I got to ask, though, because I am not sure if I worked in L. A, I would be. I didn’t be able to identify the. The bad programs. I may be able to identify the good ones. Let me just throw out some stats real quick. Just hospice in New York. If you go to Medicare Compare, Brynn, you’re In New York. 40 hospices out there, 20 million people, 40 hospices. Florida, 57 hospices for 23 million people. This is data from Medicare Compare. You can just pull up Pennsylvania. Alex, how much? It’s like 183 for 13 million people. I grew up in a town called Costa Mesa, California, in Southern California.

That is less than the amount of hospices in Costa Mesa, California that serve Costa Mesa, California. By the way, Texas, you can’t even see all of the hospices serving Texas because it stops at 300. And if you pull up Texas, it stops at the letter C for a state with 31 million. So a little bigger than like Florida. And then California, it also stops at 300. So if you put alphabetically, it stops at 300, and it stops at the letter A. LA stops at 300, stops at the letter C. LA has probably over 2,000 hospices. In 2010, it had 109. And there’s still cities like Van Nuys where you have still tons of hospices, over 300 serving that area. And they have like a 50% live discharge rate. So, Ira, how much of this is because you actually practiced in la, you saw the hotbed versus other places like in New York, they’re not seeing the same amount.

Ira 24:02

No, no, that’s not it at all. That’s not it at all. No, no, no. So I’ve been working on another presentation and potential essay, and I’ve dug deep into these numbers. My numbers come a little bit different than yours. And I’ve talked to the state associations and dug into the current state departments of health. Florida, I get 91 license programs. New York, 39. In California, there’s over 2,800 programs. 2,800 difference is that there’s certificate of need laws in Florida and New York. So there is a public process of analyzing and assessing the population need before issuing new licenses to hospice programs. That’s the easiest way to understand the discrepancy.

Eric 24:50

Yeah. And fraud.

Ira 24:52

And fraud. And In California, you know, there’s so many fraudulent programs that have, you know, multiple, multiple programs at the same address. Partly that if they keep the census of each program small, they don’t have to report data to Medicare. There’s a lot of gaming going on, but it’s, but it’s pretty obvious for those of us who are wonky enough to dig into it. And, and frankly, the states, including California’s accountability processes, have been overwhelmed. They’re, they’re. The problem is.

Eric 25:21

I got a question, quick question, but like, honestly, I do not see the serious cases of fraud. What I see is people gaming the system, whether it be hospices or nursing homes that won’t take somebody on hospice unless they have like, you know, two weeks of skilled nursing facility or hospices, you know, having high rates of life discharge or hospices, you know, mainly focusing on nursing homes to patients with dementia where they can increase their length of.

Ira 25:49

Stay, or hospices with 20 patients per nurse or hospices that have one doctor for 300 patients.

Eric 25:55

Is that a 1-800-Medicare? Like, is that fraud or is that more the solution?

Ira 25:59

That’s just bad care.

Eric 26:00

That’s just bad care.

Ira 26:01

That’s just programmatic. There are two separate issues and too often they get conflated. There is flagrant fraud and abuse, and then there are just a lot of ersatz or just mediocre midlands programs that may get by most of the time, but when things are going bump in the night, when a patient’s pain is crescendoed, when the patient has just, you know, bled into their, you know, had a blood into her liver or have infected their bowel or is having status epilepticus. When that happens, the middling programs cause suffering.

Eric 26:38

So let’s talk about solutions. Now. We’ve, we’ve gone past fraud and abuse, which you’re going to call 1-800-MEDICARE. For now, we are in solutions. So the very first one is clinical and programmatic standards.

Ira 26:50

Well, let me, let me. Can I frame this?

Eric 26:52

Yeah.

Ira 26:53

I think to understand all of these, I think we’ll have to understand that those of us who have, who have been there for a long time, and I would include and everybody who is truly committed to quality access to services and quality of care, everybody on this podcast included, obviously, we have been, I think, worried about capitalism, and I’ll put it first person, singular, I’ve been cowering from the pressures of capitalism and the profit motive, some of which has become toxic capitalism. And I think what I realized a couple of years ago is that’s not going to change.

Capitalists, we live in the United States. Capitalist healthcare for profit. Healthcare is alive and well and it’s not going anywhere. And the solution really is to pivot and embrace capitalism, recognizing that we can still steer the profit motive toward driving higher quality, higher access and higher quality. How? That’s what the four steps are.

Eric 28:00

Let’s talk about the how then. How do you do that? What’s the very first one?

Ira 28:04

First and foremost, by setting clear and explicit programmatic and clinical standards for both hospice and separately palliative care. They’re related, but they deserve to be distinct. This field has since the inception been resistant to publishing clear and explicit programmatic standards. We have the National Consensus Project’s statement, but not really operationally applicable programmatic or clinical standards. And that’s really a basis of doing ongoing quality improvement without those.

Eric 28:43

So let’s focus on palliative care. What would that look like? Maybe I can hear from each of you like A, do you agree with it? And B, what would that look like? Because I love the National Consensus Project, but it’s, it’s an aspirational document. They actually say it’s aspirational. Brin. I don’t know. What do you think about that?

Brynn 29:04

I mean, I think it makes a lot of sense that we look to other parts of US Healthcare where there is a floor, you know, minimum structure and processes to say I’m a quality service. And then we recognize services of distinction of excellence. Excellence is NCP. And I, I couldn’t agree with Ira more that we need those, you know, those minimum structure and process accountability for palliative care programs for what we would call quality palliative care. And that includes everything from who is on the team to how they are educated and trained to the service mix being provided, to the coordination services.

Eric 29:45

It’s interesting though, like when I think about TAVR programs within cardiology, I think that there are really good standards for those programs, transplant programs, things like that. But there’s no like cardiology minimum standard. There’s no like nephrology minimum standard. Krista, I see you laughing at that. Your thoughts?

Kristi 30:09

I mean, I think you make a good point. We do have a good evidence base to describe in the various settings how we can come to the good outcomes that we can get with palliative care consultation. What is needed. So while to Ira’s point, that’s maybe not being presented as, you know, one big cohesive standard, we are continuing to work to be sure that what we’re putting out is really evidence based and can be applied to the populations as they’re appropriate. Right. So we’ve all seen over the course of time of our, the growth in our research so that when we do put these things out, we are really using well informed science. So I’m sure you’ll, you’ll have this on your show in the future.

The upcoming work from the Ascent Research Consortium. These are the kind of the building blocks to be able to do what AIRA is asking for. Well, and I know, you know, you think we already have everything out there. We have the potential to harm patients, to harm the field if we don’t do this in a really well informed way. And so I agree that we do need the evidence to be able to say like, hey, if we want to get these outcomes, this is how we do it. And we’re continuing to support those efforts to, so that we can do it in the most personalized way possible.

Eric 31:40

So I love that because like, you know, looking at Marie Bukaidis work like you look at the interprofessional team and what they’re doing to reach people in their homes, you can also look at like how do we deliver palliative care to stem cell transplant patients? And the evidence there is, well, you have a doctor and a nurse, advanced practice nurse, go see patients, you know, a couple times a week and you’re really focusing on just symptom management that is not like the full NCP guidelines.

Alex 32:08

Or remember we did that podcast with the social worker and because the heart failure teams, I think this was at the Brigham in Boston, realized, huh, we really just want the social worker and she was doing tremendous work.

Eric 32:21

But that’s, and that’s the evidence we’re pulling from. Right. So how do you balance that, Ira, is that the evidence is generally not the eight domains of palliative care for every single aspect of even specialty palliative care like Jennifer Tamel, 2010 New England Journal. Rah, rah, rah, palliative care, physician, nurse, focused on not everything that those NCB guidelines say.

Alex 32:45

Yeah, yeah, if you create standards, it can constrain innovation.

Eric 32:48

Thoughts on that, Ira?

Ira 32:50

Well, I think that we can both acknowledge the value of these research studies and evidence based staffing and interventions. And we need to take real leadership in saying a basic minimum staffing of programs and availability of an IDT are also important. I don’t need an evidence base to say that it’s important that teams exist, that they discuss cases. Part of what I think is the magic of our field is the interdisciplinary team planning conference in The Dartmouth program that I directed for a decade. It may be only a doctor or a nurse practitioner or a doctor and a social worker who’s involved in the liver transplant team or we had a neonatal, fledgling neonatal team.

But those people also got to discuss the case with the full IDT and run cases by them and ask for suggestions both pharmacological and psychosocial. Spiritual. So having a basic structure, I mean do we really need evidence based research to say that a palliative care team in a tertiary or quaternary medical center should be available seven days a week? Really, do we need to do that? Do we need to say that there should be a physician, a HPM trained physician and not just an RN and social worker and maybe part time chaplain?

Kristi 34:25

Well, I will say I’m going to set extenders.

Ira 34:28

Is that.

Eric 34:29

Go ahead.

Kristi 34:29

I’d like to put my program leadership hat on and you know, just talk and think about when I’m sitting in the room and asking for the leadership for a new FTE to cover the weekend. I can’t just say I think it’s because it’s nice. I can’t say because you know, I think seven days a week coverage is appropriate. I need the evidence, I need the outcomes. So I push back on that.

Ira 34:51

But you could also there are standards in the field that say that a palliative care program to be acknowledged as a palliative care program should be available seven days a week.

Brynn 35:01

That would’s where I’m at. I read too is I think standards are actually yes, they’re a tool to sort of surface where there’s low quality care happening. But they’re a really big opportunity for us to achieve the kind of resources we need to in a standardized way deliver quality care. If I am a community based palliative care program and I am in a conversation with a Medicare Advantage plan and I say it’s going to take 450 bucks a month per patient for me to achieve the outcomes you want me to achieve as your provider partner. And that plan says I’d rather pay you 350. What do we have to fall back on in this moment? We need to be able to point to those standards and say this is what it takes and that costs X amount of money. And so I think. And we need to be singing the same song in those conversations.

Eric 35:50

Well Brynn, I got a question for you Brynn. There is one healthcare system that actually has set minimum standards. Veterans affairs, they have minimum standards for staffing of palliative care teams. It’s more of a carrot. Not a lot of stick anymore with that. But I think that led to incredible growth of palliative care within the VA system. Is that what you’re kind of thinking too? Kind of setting those types of minimum standards?

Brynn 36:16

Yeah, I think that’s a beautiful model. It was a much friendlier sort of payment environment inside of VA than there is outside, you know, So I think, I think this really is, it’s on us as a field to define what those standards are and then to be able to live up to them. But we need to be able to use that to get the resources we need to deliver on quality. So I, you know, Ira has poked me on this many times over the years that who’s going to care about the standards if we publish them as a field? But you’re right, Ira, that the first place is we have to define them and then we work on making them meaningful. So, you know, opportunity.

Eric 36:52

And I love this. I was actually listening to another podcast of yours, Ira, where you said it was around hospice standards and maybe it was actually in your paper, like if we don’t define those standards for hospice around quality, others will like Medicare and then we’ll gripe why those standards are bad. Right?

Brynn 37:10

Exactly right.

Ira 37:11

I mean, you have to understand that the profit motive is pernicious right now. I think we have a chance to redirect it. It’s almost like the profit motive is a gushing river, a big river, and we’re not going to stop that river. But we can insert certain valves so that a lot of the pressure goes in ways that we want it to and drives hydroelectric power or irrigates farms and the like and is productive. And right now the profit driven companies, not only the shareholder owned and private equity owned companies, are eating our lunch. They make money mostly by giving less care and by tolerating unmet needs by seriously ill and dying patients and their families.

Eric 38:01

Kristi, what’s the academy doing with this?

Kristi 38:03

Yeah, I’d like to go back just to that comment about, you know, if we don’t set the standards, other people will. And which is absolutely true. And there’s multiple ways to be setting those standards as individuals, as healthcare systems, as organizations like the ones that Bren and I represent. And so the work that’s done with Medicare, we are at that table, right? We are constantly working on those standards, trying to help to guide Medicare to be able to weed out. Well, what do you need to do to be able to identify a hospice that’s not providing quality care? While still supporting those that are getting people the access that they need.

And so it’s not that this is in total isolation, that if we’re not publishing a standard, we’re not involved in working on those things at all. So that’s something that we are always been involved with. We’re continuing to do that work and have literally, you know, some of the best hospice minds in the country that are contributing to the work that we do to advocate and to proactively reach out to the folks at CMS that are doing that. So we’re continuing to do that. I think the other big piece that we’ve talked about is the workforce and some of, you know, the challenges that Ira had mentioned of, you know, not having somebody at a program, sometimes it’s a workforce issue.

Not having someone have the skills that they need after they’re in position in the workforce is also really important. You know, we know that a lot of these hospices don’t have a full time physician. Right. They’re spending 90% of their time doing something else. And so that’s a focus of our work as well, is working with our hospice medical director certification board. You know, that was kind of born out of the academy with support from a lot of other folks and working on an alternate pathway for that certification to be sure that those people who are maybe working for these companies that we might question, you know, are they really mission driven?

But if we can support the docs that are in those positions to make sure that they have the expertise that they need and start to be able to equip people to get board certified, so then we can start to have that as a requirement. We encourage health systems to require it for the hospices they work with. We encourage health for payers to do that. These are the building blocks that we need to be able to improve that care in different places. So we’re going towards the individuals providing care, we’re going towards the people that are paying for it. We’re going towards the people that are contracting with it. It’s a multifaceted approach to try to improve that care that’s happening.

Alex 40:37

And if our listeners want to get involved, Kristi, is there anywhere that could.

Kristi 40:42

Go, oh, my goodness, I’m so glad you asked that question? Of course. I mean, Ira mentioned. I think it’s always important for all of us to be working at our grassroots first. Right. You know, encourage the people in your own organizations to be looking towards quality. Call your local organizations, be a part of your local advocacy organizations. Of course, I’m going to recommend that you’re a member of HPM so that we can continue our advocacy. But I think most importantly right now is we have a call for volunteers to participate actively in this work, to participate in our existing committees.

You know, we have multiple committees that work on various elements of this. We have quality education, public policy and advocacy. But we actually just opened a call as well for a special hospice workgroup that’s helping us to really pull together. What are the issues that we’re missing, you know, what’s the strategy that we haven’t quite lined out yet. And so we really want the people that are passionate about this to join us. And so that call is open. Open yesterday. It’s open until the 20th. So we invite people to that are passionate about this to get involved.

Alex 41:53

Ira, I think you want to say something provocative here. Go for it.

Ira 41:59

Well, I just want to say I agree with everything that’s just been said. And. And I think the Academy remains an extraordinarily powerful and important voice in all this. I do think it is. It’s very frustrating to me to hear the Academy and the alliance, for instance, alliance for Care at Home and others say we’re working on policy issues where we’re meeting with CMS or we’re writing Congress or we’re testifying here or there. And while that’s obviously a good thing, please do it. I’m glad. I’m delighted that it’s being done.

We need to say, this is to us, the publication, the explicit issuing of programmatic and clinical standards belongs to us, regardless of what we’re also doing with the government. From the inception of the professions. First there were guilds. Anybody who’s taken Western Civ first there were guilds. And the guilds evolved into professions. And one of the things that the professions do is they elaborate standards for the practice and standards for the professionals that become part of the profession. And we have not done this in hospice and palliative medicine. I still think it’s something that we need to do.

And you named them the academies, CAPC, hpna, I would put in SWOG, or the Hospice and Social Worker group, SWIPIN, the chaplaincy group. That’s to us what we have to. The edgy thing that I wanted to say, Alex, is that we should get over expecting the national alliance for Home Care or NPHI to join us in this effort. They are the trade associations, and I can tell you directly, I know directly from them, they are not going to go there. They are not going to publish or endorse standards. So it’s up to us, the professionals, to do that.

Kristi 44:03

I’ll say. The call I just got off before this meeting was with our colleagues at MPHI where we were finalizing a document that we’re putting about about the need for expert hospice physicians. So while, Ira, you know, all organizations have their priorities and their needs that they have to address. I disagree with you that we can’t work with those organizations to improve the care. And we’re doing that actively.

Ira 44:29

I would love to be proven wrong, but I can tell you what has been directly said to me by leadership of both organizations. So I would love to be wrong and I would support them in those efforts enthusiastically.

Kristi 44:41

Challenge accepted.

Eric 44:42

Brynn, what do you think?

Brynn 44:46

You know what? I think there’s expertise in those organizations in terms of the policy conversations, expertise and relationships in terms of policy and in terms of payment that we need. Everybody on this call, like you said, AIRA has a real vision of what quality care looks like and a commitment to not fall back on that. And let’s be working with every partner we can to make sure that we can push that vision forward.

Alex 45:09

Well, I was just going to say we’re running up against the time limit here and maybe briefly summarizing the other points we’ve already touched on. So Ira has kind of four main points. We talked about the clinical and programmatic standards. We’ve talked about need to drive competition based on quality, which has to be based on data, which is kind of his second and third points combined together. And the last one Ira was just talking about, about this is our brand. This is our field. We own this.

We started this. We do need to embrace and promote our authentic brand. Is it all right if I just kind of summarize that as a clump, Eric, and then move on and talk about other things in the last five minutes? One thing I wanted to make sure we mention is Karen Bullock gave a great. She was one of our guests at the CAPC conference and she talked, she wrote a letter, you’ve probably seen it, in response to your white paper with several terrific co authors and said that we need to center equity. And it was, you know, missing in large part from this white paper. And given that the disparities and inequities, persistent, historical in hospice care and palliative care, equity needs to be centered. Whatever we do, we can’t try to increase quality for many at the expense of a few. Right. These initiatives have the potential to worsen disparities if equity isn’t centered. Anything you’d like to say in response to that.

Ira 46:32

Oh, I agree entirely. I think I’ve just been educated in the concept of the quintiple aim rather than the quadruple aim, with the fifth aim being equity and acknowledgement of diversity. I read that letter to the editor and responded to the authors directly within 24 hours. I’m delighted by their emphasis. Would love to contribute to working with them. Let me say that the lack of attention to that issue within this 9,000 word white paper was acknowledged in a paragraph within that white paper. There were a number of things that I didn’t feel I could squeeze into the scope of the white paper and the historic inequality was one of those things. Other lapses or omissions are attention to pediatric needs, children’s needs in that and then other issues of difficulty with access, rural other issues as well.

Eric 47:32

And I encourage all of our listeners to listen to the podcast. We will have a show notes on that. Alex, can I ask the last question? Magic wand question. If you had a magic wand, you had one thing that you can do to improve hospice and palliative care, what would you use that magic wand on? Again, briefly, we’re running out of time, Ira, what would you use it on?

Ira 47:52

Well, converting competition in the field from based on finances and margin to be based on quality in service of margin.

Eric 48:02

Wonderful, Brynn.

Brynn 48:04

I go with the palliative care benefit and the quality accountability that comes with it.

Eric 48:09

Wonderful, Kristi.

Kristi 48:12

I think just dispelling this myth that we cannot all work together to provide better care for people with serious illness.

Eric 48:20

Coalitions make us stronger. Alex, do you have one?

Alex 48:24

I think we need more dialogue like this where people I love the way that you all modeled respectful disagreement and this is this. You know, it could be a wedge issue in our field. We really don’t want that to be a wedge issue. We want it to be something that motivates us to think deeply about this and we welcome these difficult conversations. We can do this. That’s what we do. We have difficult conversations.

Brynn 48:47

Alex, can I say something response to that? And seal our seconds to break the third wall, fourth wall, some ninth walls. I’ve had this conversation now with Ira four or five times. Kristi and I talk regularly about what to do here, you know, as I do with our colleagues at HP&A and at MPHI. I think this is happening. What I would want all of your listeners to know is like this is happening off camera too.

Eric 49:11

I think that’s really helpful. It’s that transparency part like, because as a member you don’t know that you don’t know that these conversations are happening. So I, I want a special shout out to Kristi and Brynn for being on this podcast because it’s a hard conversation and you’re part of these organizations that are holding up that are member organizations, and I think that’s a big challenge. So huge shout out to both of you for also just the courage to be on my magic wand would be. I’ve been listening to a lot of podcasts. One of them is TCN Talks, which Ira, I think you were just on podcast, Chris Como and Kurt Kastner was on. And I learned something about the National Hospice Locator.

Ira 49:49

Great tool. Great tool.

Eric 49:51

Yeah. I wish it had a little bit more transparency and like, you can actually see the numbers being calculated. But, like, they use things like equity as part of their calculation. They use like, was there waste, fraud or abuse penalty? Like, so I would encourage folks look at Medicare compare, look at National Hospice Locator. And we have the power to help influence which hospices our patients go to. So encourage that. And with that, Alex, do you want to. What was the song title again? Christie?

Kristi 50:20

We can do more things.

Eric 50:21

We can do more things. All right, quick one, Alex.

Alex 50:29

(singing)

Eric 51:51

Love it. Ira, Brynn, Kristi, thanks for joining us on this podcast.

Ira 51:56

Thanks so much for doing this.

Brynn 51:57

Thanks for having us.

Eric 51:59

And to all of our listeners, thank you for your continued support.

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Disclosures:
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