Welcome to TCNt alks. The goal of our podcast is to provide concise and relevant information for busy hospice and palliative care leaders and staff. We understand your busy schedules and believe that brevity signals respect. And now here's our host, Chris.
Chris Comeaux:Como. Hello and welcome to TCNt alks. I am super excited. Today, our guest is Dr Ira Byock. It almost feels like he doesn't need an introduction to our many listeners, but he's a leading in palliative care physician, an author, a public advocate for improving care through the end of life. He's the founder of the Institute for Human Caring of Providence Health. He's the past president of the American Academy of Hospice and Palliative Care Medicine, ahpm, from 1996 to 2006. Dr Byock directed the Promoting Excellence in End of Life Care and National Grant Project of the Robert Wood Johnson Foundation. He's written several books. His books include Dying Well, the Four Things that Matter Most and the Best Care Possible. Dr Bayak is so good to have you.
Ira Byock:It's really nice to be here. Thanks very much for asking me to come on the podcast.
Chris Comeaux:You bet this has been something I've been looking forward to for a while, but always, always want to give our guests the opportunity just to connect with our audience personally. So what do you think they need to know about you besides those amazing kind of thumbnail of the bio I just read?
Ira Byock:Well, I still experience myself as being first and foremost a clinician, with a perspective of a clinician. I started my medical career as a rural family doctor, kind of cradle-to-grave family medicine, and even during my residency it was pulled in two directions one toward hospice and the other toward emergency medicine. And I ended up doing both for quite a few years and kind of you know, initially I mean, I did emergency medicine to feed my hospice habit because you couldn't make a living back in the late 1970s and early 1980s doing hospice work. So it was a volunteer effort and I was, you know, I guess I've risen in leadership just because I was writing and trying to figure out for myself the ethics and clinical practice of caring for people who were facing the end of their lives and have a predilection for committee work apparently. So kind of was part of fleshing out what has become the discipline of hospice and palliative medicine throughout my career. Frankly.
Chris Comeaux:Well, before we jump in, I was giving you kudos in the show prep, but I want to do it again now. There are a few books that I've quoted like hundreds of times and I'm a pretty prolific reader the amount of people I've paid forward, the four things that matter most. You know quite often, growing up in hospice and palliative care, people are in tough situations and you want to say the right thing. And the number of people I've just told hey, before you love one past, I want to give you this piece of wisdom. And the number of people circle back later and said you do not know what that meant and how we got reconciliation, healing before my loved one. One person even said I think this will change the trajectory of the rest of my life, and so I just want you to know the impact that that had.
Ira Byock:Thanks very much for saying that. It means a lot. I didn't invent the four things that matter most or the five things with goodbye as the fifth thing to say, but I very deliberately have been kind of the Johnny Apple seed of that little piece of practical wisdom through my career, putting it into almost every lecture I gave for many, many years and then writing that book as a way to pay it forward myself. So it means a lot whenever I hear from people that it has impacted their lives.
Chris Comeaux:Well, many people say right, as an Arthur, I don't know where I began and where the multiple people that I read and the wisdom that I harvested, but I love your analogy of the Johnny Apple seed. Well, let's jump in. So you actually wrote a great piece. I'll even say even a good provocative piece, titled Provocative in a Good Way for a Conversation we Need to have. The hospice industry needs major reforms and it should start with apologies. What led you to write this?
Ira Byock:Oh boy, frustration. I think hospice as a national field, as an industry that we've become, is in danger, is in really trouble and there is a way out of it, but we have to acknowledge that there's a problem and then get busy fixing it. What I see, and have seen for a number of years in the national associations which I've been privileged often to be behind closed doors in leadership meetings with, is a failure to acknowledge the responsibility that we have had and the fact that a real crisis in American hospice care has happened during our watch, and to own that in a way that we can then put forward strong recommendations and actions on our own in a way that you know solves this crisis, which, again, is solvable, but only if we actually acknowledge that it exists and are willing to take the hard actions to climb out of this morass.
Chris Comeaux:Well, I think you, I agree we're in a crisis, we're in a crossroads, and so you're a great physician. So when we just start with, what's your assessment of this situation? So it feels like you've kind of you're a little bit on the periphery, so let's just be a little bit more explicit. What is our assessment of the current state of the hospice and about care movement?
Ira Byock:It's interesting that you call it a movement. That's so interesting.
Chris Comeaux:I can tell you the history of that. It started as a social movement right, yes.
Ira Byock:Led largely by nurses. Thank you very much. We started I mean I got into this field back in 1978, 79, and we were meeting in school basements and, you know, church meeting rooms after hours and trying to figure out how we can put together a little community effort or an effort within our health system, always volunteer to just care well for the health of the community, to just care well for people who were dying badly, often suffering as they die needlessly, often dying alone with a television on in their, in their, you know, hospital room. And we grew up into an industry right through our success. My assessment now is that hospice quality of hospice care across the country is highly variable, whereas, thank God, still some fabulous hospice programs that are doing remarkable work, that are well staffed, that are responsive to people's needs, that easily exceed any of the conditions of participation and will score well on quality parameters. And there are quite a few, quite a few hospice programs in the country that I would try to protect anybody who was looking for a program from that highly vulnerable people are made even more vulnerable and at risk by being cared for in programs that do not meet even basic conditions of participation, that are under staffed in their nursing staff. So case loads are untenably high that do not have enough physicians to care well for seriously ill and dying patients, and we can talk more about that, because it's where I probably have most standing to have expressed feelings and beliefs about hospice physician roles.
Ira Byock:As a as somebody who practiced for years both hospice medicine and also emergency medicine, it worries me a lot. I literally lose sleep over knowing how many hospice programs now cannot effectively respond to symptomatic emergencies in the homes of hospice patients. And I had I've been a hospice medical director for a decade. I was I was the director of a large palliative care program at Dartmouth for nearly a decade and very much focused on what do we do in emergencies? Can we? Can we provide the same response in emergencies that somebody would get in an ambulance or in an emergency department? And we got very close to being able to answer that.
Ira Byock:Yes, but now with other you know trends impacting this, including the opioid crisis we have retreated as a field. We have retreated far from that, and I worry about and it's not an abstract worry, chris I know multiple cases of patients who have suffered needlessly, of families who have felt utterly betrayed and abandoned when a when a symptomatic emergency has happened in their home. So that's, that's where we're at in the country, and and you know, and so quality is variable. Some of it's very good, but when you look at things like emergency responses to emergencies in the home, boy, it's. It's unusual these days for me to be able to appoint to a hospice program that reliably does that well.
Chris Comeaux:Gotcha, I had Dr Tino on earlier this year and you could refuse to answer this. But do you have venture a guess? Of what percentage do you think that, of those programs that are probably giving you a chance to answer this, that are probably giving us the bad name? Because, unfortunately, right articles like the pro-public articles it then tended to paint everybody in that light.
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Ira Byock:Well. So I didn't read that in that way. I don't think it paints everybody in that light, but it does. When the associations then deny that the ProPublica article has any worth at all, but I don't know and I'm not sure I could hazard a guess. I will tell you that when I last looked at the data carefully, 53% of American hospice programs provided no continuous home care or GIP care, which, by the way, as our listeners know, are conditions of participation.
Ira Byock:So what exactly happens in that situation when a patient is starting to seize and is having one seizure an hour and then two seizures an hour and they're kind of what we call kindling and they're going into gradually into status epilepticus? Or what happens when a patient has just had a bowel infarction at home and is having crescendo pain and really the oral morphine isn't working or the sublingual morphine? What happens in those situations? So I think it's a substantial number. I don't think it's good. I don't think it's not like there's one or two bad apples in this barrel. I think there's enough bad apples that the barrel is starting to smell like rotten fruit.
Chris Comeaux:Good deal. Well, I think you've done a good job kind of defining the state, the assessment. Can we move to prognosis now, like, what's the prescription? How do we set back on the right course here to fix this?
Ira Byock:Well, let me, I have to say so. You asked me why I wrote that second article. I've written two articles for STAT, one, december 14. I just looked up the date today, december 14, 2022. And they titled it STAT, titled it Hospice Needs Saving, and that looks at the problems, not of the pro public article which looked at pure fraud in hospice. I looked at the highly variable quality of hospice care which we have been watching for years and been discussing behind closed doors at the National Associations for Years but haven't really acted on. I believe that's my my belief.
Ira Byock:I wrote the second article which you asked about and emphasize the importance of apologies, because corrective action the prescription for corrective action, has to start with owning the fact that, while we were responsible and we all knew this was happening, we let it happen and at this point now the associations are feeling very defensive and they they are doing things like writing Earl Blumenauer with 34 recommendations. Well, I happen to know representative Blumenauer. I've worked with him a few times. He's a lovely man and a wonderful representative, but he chairs no important committees. He, you know. I mean writing Earl Blumenauer about recommendations. I don't mean disrespect, but it's a little bit like writing Santa and asking for things to change. So that's a little bit weak, but we have to to assert to the, to American public or to Congress or CMS that we are responsible for our field and these are recommendations. That has no power from my perspective unless you acknowledge that we've already had this responsibility and these problems have happened under our watch.
Ira Byock:So I think that apologies, both in the personal, which is where I started with with somebody had asked me there's a real story. Somebody asked me what have you learned over the years from your clinical work? Personally, and I've learned a lot of things, but the thing I answered which is really most resonant for me is I've learned it's important to apologize when I screw up, because apologizing says you know, this relationship is more important than the shame I currently feel about having screwed up again. So I think the field really needs to start with apologies to say look, we now recognize that this was happening all along and we haven't responded to it sufficiently. And now here's what we're going to go. We're going to do, going forward.
Chris Comeaux:So let me get, let's unpack that, and I love that. You said that I get pushed back in this. So I grew up at four seasons. There are a lot of great nonprofits, and you said in the pre show you're not making this thing a for profit, nonprofit thing. I'm partial to nonprofits because that's where I grew up.
Chris Comeaux:I had an amazing, I'd almost say like an Arrabaya kind of protege, because Janet always looked up to you. She was an amazing physician, her own right, and so we built a high quality program. And so for me to look at that and go well, I don't want to apologize for we've built something that is so different than the other folks. But I could also convince myself to say you know what? I hear you, I apologize that we've let that occur in our industry. Here's where we're doubling down in our community and I will use what spirit of influence I've been given to affect the national. But you also have my commitment as a CEO. That's not what we have here. In fact, we're going to double down on the quality, something along those lines.
Ira Byock:I don't think the local excellent programs, either for-profit or non-profit, should apologize for anything. But I think NHPCO and the American Academy of Hospice and Palliative Medicine and I'm a founder, one of the founding members among many, of both organizations need to apologize. Nhpco, I can tell you because I've talked to Jay Mahoney over the years, I've talked to Don Schumacher, I've talked to Edo. The board knows that this has been happening. There are people now that are pissed at me for having written about it in public, but it's a little bit like they're pissed because I've told family secrets.
Chris Comeaux:We're about moving things forward and I'm a huge history buff. Quite often it is the firebrand who says the stuff that needs to be said. That moves things forward. Let's go to that prescription. How do we fix this thing? I actually wrote something in the show prep to you and I'm like, well, maybe frame your answer public policy level and you totally push back on that. I love that. What do we need to do?
Ira Byock:Let me say NHPCO, nhpci, leading Age and one other I can't remember. The fourth organization wrote 34 recommendations to CMS and Congress. They're excellent. I encourage listeners to go look at them. I think all of them are excellent. If I have any gripe about them at all, it's that almost all of them could have been written a decade or more ago and we didn't. A lot of them have been discussed in board meetings, in advisory meetings and committee meetings, but it took the ProPublica and New Yorker article for us to finally write those In a public policy sphere.
Ira Byock:Obviously, cms and their surveyors need to do a better job. They need to survey more often, but they also have to survey more adroitly. Some of what they do is just stupid and really ham-handed and they're surveying for the wrong things and they're conflating really good care that, for instance, not all of us have had the experience of meeting somebody with late-stage dementia or severe heart failure and because of the excellent, meticulous care that they receive through hospice, they end up living far longer than they were expected to In a ham-handed surveyors can look at that and say, well, this was fraud, because they should never have been admitted to hospice, which is absolutely absurd. It's injurious. What other specialty in the United States has to worry if their patients live longer and do better? Right, it's absurd. I also think, however, that in calling for them to do better the surveyors in CMS to do better it falls on us to give them guidance. We, as provider organizations or associations representing provider organizations, should lay out clear parameters and help them understand how to separate excellent care, which is causing long lengths of stay, from really cherry-picking business practices that front-end load people who are going to get long lengths of stay. So there's that.
Ira Byock:I also think, by the way, that while those 34 recommendations are excellent, for those of us who read deeply into industry newsletters, it is so common to find that after the public announcement and press release of these recommendations that are so progressive and protecting of quality, that there are memos that go out to CMS from the association saying don't do it yet.
Ira Byock:We're not ready yet the protocols aren't in place, the metrics aren't exactly right. I think that's Well to say. It's disingenuous is the nicest way I can put it, but it really is a way of trying to wear a white hat in public and undercutting the very good work that we're trying to do. These are never going to be perfect, but if we recognize how serious our brand is being damaged and, more important than that, how injurious the deficiencies in hospice care are to the most vulnerable patients and their families in our American healthcare system, we would have a different slant on the urgency of our recommendations to CMS and Congress and the urgency of policing ourselves in this regard, and that's what we'll, hopefully we'll talk about in a little bit.
Chris Comeaux:Yeah, that's actually where I was going to ask us to go next. So let's say, you and I were starting our own hospice today and okay, Dr Barak, what are those things we want to hold ourselves accountable to? That we will take to the accrediting body and say, hey, these are the things we're no, we're doing, we're holding ourselves accountable to. You should maybe survey us based upon and survey other people. What would those things be?
Ira Byock:Boy.
Ira Byock:So I would start with basic staffing levels. You know. Again, just let me call attention for the listeners. I was the lead author on a article in May 2023, journal of Palliative Medicine that was co written or co affirmed by 325 hospice and palliative medicine physicians. That is called core roles and responsibilities of physicians in hospice care and we put out some basic parameters for what hospice physicians should do in their program and what their employment agreements should both require them to do but at least allow them to do, like making home visits, being available for emergencies, having no more than 75 or, at the very most, 100 patients that they're responsible for on any given day, being active in staff development and team development and continuous education, either being a board certified in hospice and palliative medicine or then, as a hospice medical director certification and, if they are not board certified or have a HMD certification, pursuing that as a condition of employment. We also said in that article that our colleagues, our hospice nurse colleagues, should have no more than 14 patients on their responsibility, their caseload, on any given day. Now there may be slight exceptions, for you know, we all know, and that's the pushback that comes back as well. You know why it's very complicated because, you know, some nurses just have a single building with all of their patients and all this, you know. Let me just say to that, yeah, it's complicated, but it ain't that complicated. We do a lot of things that are more complicated than that, and having organizations where the caseload for hospice nurses is routinely 18 to 20 or more patients has, you know, does not pass the SNF test and so, anyhow. So we're back to surveyors. I would ask surveyors to look at what we published 325 hospice and palliative medicine physicians signed that. It's a very actionable set of recommendations. That would be a place to start.
Ira Byock:I would ask surveyors to also survey for staff well-being. This is an area of data that I believe we all those of us who are interested in quality need to start looking at data sources for staff well-being. You know, in nursing homes we look at and I think it's probably the most potent nursing home quality parameter is the annual turnover rate of nurses' aides in long-term care. I think we need similar parameters to balance the current quality data that we all look at in hospice care, because so much of the current data, frankly, has turned out to be gameable and we need another data source and I would say staff well-being, consistent with, you know, the quadruple aim of American health care's quadruple aim of quality.
Ira Byock:You know staff well-being is an important one, so look for measures of moral distress but also staff distress. Surveyors could privately interview a series of nurses about how late they chart at night, whether they feel that their case load allows them to give really high quality care. I would urge the surveyors to ask about what happens in an emergency in a patient's home and whether they have the medications in the home that they need or whether they have to go to the home, assess the patient, find a physician to prescribe a medication, get that often written medication prescription, find a pharmacy that is open and has it and then get back to the home. Right, those are problems that cause unnecessary suffering of the patients who depend on us on us for reliably safe and effective care.
Chris Comeaux:This is good, so one of the ones that I'm surprised. There are two things that you didn't say, although I can see at the lower level where these things are leading indicators. So number one re-hospitalizations. I have a friend who, to say, he's part of a large payer, ended up managing a large amount of lives, and she was sharing with me her perception she has formed about hospices based upon the re-hospitalization rate. I was appalled what she told me. Years ago, dr John Morris and I did an interesting project for a large healthcare system to take their 55 hospices down to four preferred providers. It's like speed dating 55 hospices. It blew me away when I started to see the re-hospitalization rate, but I could also see where that's kind of a lagging indicator or some things that you just talked about.
Ira Byock:But I think it's excellent. I mean there's structure, function and outcome right, the Donabidian model of quality improvement. You could start with structure. Surveyors could ask do you provide GIP care or continuous home care? It's a condition of participation. If you don't, what happens with your patients? Do you have a contract with another provider to provide these services? Or do you discharge the patient, which I have air quotes up because we're not supposed to? The benefit is the patients to revoke. But it's often not the way it happens and patients end up in emergency departments, end up in acute care hospitals. If they're lucky they get into an acute care hospital that at least has an inpatient palliative care team that can help them be cared for. But these are things that are egregious and they're not that hard for a surveyor to determine. But you were right, rehospitalizations happen too frequently and they're often linked to the lack of GIP or continuous home care or just really deficient responses to emergencies. Yeah, absolutely.
Chris Comeaux:And the other thing I was kind of surprised is a pain measure. So there's a national consultant you know I've got an ongoing debate and he's like, have we really? We haven't moved the needle whatsoever in quality and he's probably almost 40 years in hospice movement now, and so I could argue both sides of the equation. But what are your thoughts about like being held accountable to some type of measure around pain and symptom control? It wouldn't be where I would focus attention, frankly, Tell me more, because with your background I find that fascinating.
Ira Byock:I just think there's way too many variables that can impact that and whether it's you know, whether it's the patient's pain or the perception of pain by the family. You know, in an inpatient palliative care program we look at using the patient's baseline as the mark and then the delta from the baseline and that's useful clinically. But I think as an aggregate quality measure I would not be. I don't think it's a strong quality measure. I think there's too many variables and it's too easy to misinterpret.
Chris Comeaux:And do you think maybe game at the end of the?
Ira Byock:day and I was trying to avoid that.
Chris Comeaux:Well, we want to be honest on this. I just about really respect your response on that. Well, dr Bayak, final thoughts and you and I are going to go into Extend at Play because there are a couple of great lead-ins. I want to ask some questions just for our tele-ass members. But what are your final thoughts?
Ira Byock:Well, I'm going to come back to the associations. This is a problem we can solve. This is not about for-profit versus non-profit. I think the for-profits particularly after they went through the wholly-owned, family-owned for-profits which I used to speak in favor of, because they were usually owned by zealots who were utterly committed to quality and really did this out of a passion as they went through IPOs and became publicly traded within two years I saw multiple previously excellent for-profits deteriorate and it was shown in caseloads and the level of involvement of physicians in staff stress and it just kind of spiraled down. Now we have the private equity that are pushing it even harder and I could go further into this, but we can maybe talk about that in our extended portion. But it's not about for-profit versus non-profit.
Ira Byock:I want the for-profits to succeed. I really and truly do, because they're not going away. I want them to succeed, but they must succeed through providing reliably excellent care. They must provide, at a minimum, safe and effective hospice care and they should really be competing in the marketplace against their for-profit competitors and their non-profit competitors by customer delight and by staff delight. And frankly, we now know there's a margin to do that. A well-run hospice program can reliably provide 6% to 8% or maybe even 10% profit margin on against expenses, but reliably providing 18% to 20% or 22% comes at the expense of staffing, of responses to emergencies, of number of visits and, frankly, of unmet need by the patients and families these programs serve. Again, it's untenable. I'm one who does not believe it. If hospice CEOs of local programs or regional programs are proudly presenting to their boards or overseers 18 to 22% profits, they should know that I'm one who thinks they're earning their place in hell.
Chris Comeaux:That's well said. One last thing I wanted you to say. We also have the ears of lots of hospice and power care staff people by the bedside. What would you say to them?
Ira Byock:Well, you're doing God's work. This is the best clinical work that I've ever done. I mentioned I was a rural family doc. For a short period of time I practiced emergency medicine for nearly a decade and a half. I've practiced hospice and palliative medicine for the largest part of my career, something like three and a half decades. I'm now no longer seeing patients, but that's what I have done and even recently have overseen and resource large amount of palliative care programs through the Providence Health System.
Ira Byock:I don't know of any more vital and frankly satisfying clinical work than being at the bedside of a hospice patient and supporting their family. The fact that it is always a crisis in patients and family's lives makes our work ever more important because, as most of what I have written tries to my own contribution, I hope, to the hospice literature has been to show that in the midst of this crisis, we can hold a space for people to be confident that their symptoms will be managed, that they will not be too heavy a burden on their family and have allowed them to grow inwardly and together toward a sense of well-being through the very end of life. That's the highest clinical goal that we can have for these patients and the people we serve. I believe that hospice clinicians are holding up not only the highest work of healthcare but, frankly, are examples to our culture of the inherent value of human life and the full continuum of human caring. Wow.
Chris Comeaux:Well, thank you, I'm so glad to ask you that question. One of our team members CEO is one of our tele-ass members sent me a book. It's a lady that retired to the community. It's actually called Angel, second Class. Of course it's a take-off and it's a wonderful life. It's nothing but hospice stories from an amazing hospice nurse. I was sitting there with tears going down my cheeks and all the stuff, the challenges. How do you navigate value-based care? I feel like we've kind of lost that focus on. This is really what we're here to do. So thank you for taking us back to that. Thank you for your body of work, dr Bayak, and we're going to end with a quote which is actually from Dr Bayak himself. In this situation, whether the solution to the problem or the problem itself, thanks for listening to TCNt alks, thanks for having me Chris.