There are a lot of large numbers that involve heart failure, starting with the sheer number of patients diagnosed (6.5 million and counting), to the cost of their care (~$70 billion by 2030), to the amount of money invested by the NIH into research ($1 billion annually). But the smaller numbers deserve attention too – 50% of patients die within 5 years of their diagnosis, those older than 65 in the hospital die even sooner at ~2.1 years thereafter, the median survival on hospice since hospital discharge is 11 days, and <10% of patients with heart failure receive a palliative care consult. So what can we do to bridge the gap between heart failure and palliative care?
As a current palliative care fellow and former hospitalist on UCSF’s Advanced Heart Failure service, I have a strong interest in this question. This week I was lucky to have Alex and Eric let me join in interviewing Haider Warraich, Associate Director of Heart Failure at the Boston Veterans Affairs Hospital and Associate Professor at Brigham and Women’s Hospital, a cardiologist trained in advanced heart failure and with a strong interest in palliative care who has written multiple books (Modern Death: How Medicine Changed the End of Life, State of the Heart: Exploring the History, Science, and Future of Cardiac Disease), op eds, and research articles on the subject.
In the podcast we talk about all things heart failure – from the culture of cardiology, how to impart palliative care on trainees, and practical tips on helping predict prognosis and symptom management. For more reading be sure to check out Haider’s article in JPM on Top 10 Tips for Palliative Care Clinicians Caring for Heart Failure Patients and his article with Diane Meier in NEJM on Serious Illness 2.0 – Meeting the Needs of Patients with Heart Failure.
– Anne Rohlfing
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Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex who’s with us today.
Alex: Today we are delighted to be joined by an incredibly prolific, young writer, cardiologist. This is Haider Warraich, who is associate director of the heart failure service at the Boston VA, an associate physician at the Brigham and Women’s Hospital. He has two books about heart failure. The first one is Modern Death and has a longer title and it’s more palliative care-focused. We’re going to focus a little bit more on the second one, which is titled State of the Heart: Exploring the History, Science, and Future of Cardiac Disease. Welcome to the GeriPal podcast, Haider.
Haider: Thank you so much. I know this is overused, but it’s truly an honor to be on this podcast with you, Eric, and Anne.
Alex: Thank you. Anne Rohlfing is also our guest. She is a palliative care fellow at UCSF. Last year, she worked on the advanced heart failure service as a hospitalist at UCSF. Welcome to the GeriPal podcast, Anne.
Anne: Thank you, guys. So excited to be here.
Eric: So we’re going to be talking about palliative care and heart failure and a little bit about what you’ve written in your books, in your numerous publications. But before we do, we always go into a song request. Do you have a song request for Alex?
Haider: I do. This is a song that I grew up listening to a lot when I was in Pakistan, which is where I went to med school as well. This is a song by the band Junoon. The song is called Bulleya.
Alex: There’s a wonderful Moth episode where the … What was the name of the lead singer?
Haider: Salman Ahmad.
Alex: Oh, incredible story about how he went … He grew up in part in the United States, went to a Led Zeppelin concert, got inspired to play, went back to Pakistan, was playing guitar there, had an encounter with the Taliban who cracked his guitar, and then went on to form this band Junoon, which was the bestselling band of all time in Southeast Asia or something like that at one point. Incredible.
Eric: And he’s a physician, right?
Haider: He is a physician. Actually, I met him briefly when I was at med school. When I met him, I told him I write. He said, “Oh, here’s another confused med student.” [laughter]
Alex: I like him. That’s funny. Okay, here we go, a little bit of Bulleya. (singing).
Haider: That was amazing. Thank you.
Eric: How close did Alex get to to actually saying those words correctly?
Alex: I murdered the Pakistani language.
Haider: It is pretty good. I mean the music is great. I love it.
Alex: I love that there’s so many good things about that song. He starts off with these chords, which are kind of like Sufi mystic on guitar. Then he goes into this funk. Like this chord here, that’s James Brown. I love it. It’s great.
Haider: I still remember where I was when I heard this song. I was driving with my brother and my dad early in the morning. We heard this song for the first time, 7:00 in the morning. We were going to attend this event. It still stuck with me. Essentially, it is the story of this Sufi mystic who has now essentially reached some sort of existential crisis, where he’s speaking to his lord and savior and asking him about … He’s completely lost between the real world and this sort of spiritual world that he exists. The song’s always resonated with me. So that’s one of the reasons why I picked it. The other was just to have you sing in Urdu, which is great.
Alex: Well, thank you. Let’s dive into this topic for today. Anne, do you want to kick us off with some questions?
Anne: Yeah, sure. Well, thanks again so much for being on and for having me as well. I just wanted to start off by asking how you got interested in the overlap of the fields of palliative care and heart failure, specifically with your advanced heart failure training. Maybe just start off there.
Haider: Sure. When I was in residency, I went to Beth Israel, which is, really, if you were someone who was interested in palliative care and having a thoughtful approach to taking care of patients, I can’t think of a better place to train in.
Haider: One of the things I was struck by was there was this one particular case I remember. It was an older woman who had hypertrophic cardiomyopathy. She was undergoing this high-risk procedure and she didn’t end up having a good outcome. I felt that I had personally failed her because even though we had planned for what would happen if this goes well, I always felt like I never mentally prepared her to think about, well, what if things don’t go to plan? What are other things that might happen? I personally felt like I had failed her.
Haider: But when I looked beyond that case, I felt that was, in some ways, not … I don’t want to say emblematic, but I said it was very prevalent in patients with advanced heart disease, that a lot of times we didn’t have palliative care integration the way that we had for patients with oncology. I was drawn to both of these fields. In fact, after residency, I worked for a year as an oncology hospitalist because I love taking care of patients with cancer so much.
Haider: And so, this initially began as a clinical interest, but then blossomed into a research interest as well, where I started to more formally study some of the gaps in the care that patients with advanced cardiovascular disease experience, especially as they approach the end of life.
Anne: Just to elaborate further on what some of those gaps are for our listeners.
Haider: Sure. There’s gaps that you’ll all see perhaps at the bedside, but if you look at the data, we know that patients with cardiovascular disease are, in fact, the least likely amongst all major diseases to die at home, which, again, may not be the preferred site for everyone. But certainly if you survey patients, most patients would like to be able to die at home.
Haider: We know that palliative care referrals are put in less frequently for patients with cardiovascular disease, and when they are placed, they are placed very late during their trajectory. Eventually, when these patients are being discharged to hospice, that’s when really some of these gaps become very, very clear.
Haider: One study we performed that was published in JAMA Cardiology showed that the median survival of heart failure patients discharged to hospice is only about 11 days. That’s much shorter than that for cancer. Of these patients, about a third of them actually die within the first three days of being discharged.
Haider: Even when we identify patients as being patients who might benefit from being discharged to hospice, we know that that decision is being made very late. Then last-
Eric: Why do you think that is? Why is heart failure different than these other diseases where we’re-
Haider: Great question. I feel like part of it is that there’s a cultural issue, I think, amongst cardiologists and everyone else who takes care of these patients, that we don’t necessarily think of engaging in either primary palliative care or secondary palliative care when it comes to taking care of these patients.
Haider: Many of these patients don’t have a clear inflection point, if you may, where, for example, starting from diagnosis to more further along in their natural history, prognostication can be very, very difficult in these patients.
Haider: One of the first projects that I did was in fact looking at the specific question of how good are physicians at assessing or estimating prognosis in patients with heart failure. We found essentially that physicians really across the spectrum of training are not very good at getting a sense of how sick or how much time a patient with heart failure might have and that having more experience as a clinician actually doesn’t really change that. So whether you’re a heart failure cardiologist or whether you’re an intern, you are essentially as likely to be wrong or right about a patient with heart failure when it comes to assessing prognosis.
Haider: I think that’s really critical to why I think really we both underuse palliative care and hospice in patients with heart failure and that when we do, we don’t use it well.
Alex: Yeah. You said several striking things already. I just want to highlight for our listeners, in case they missed it, people with heart failure, discharged from the hospital to hospice, have shorter lengths of stay than people with cancer in hospice. Is that right?
Haider: That is absolutely right.
Alex: That is concerning. It strikes me that maybe where we are as a field with heart failure where we were with oncology, I don’t know 15, 20 years ago, and we have some ground to make up.
Haider: Looking at the data and then also culturally, I would completely agree with you that we’re at least 15 to 20 years behind integrating palliative care and palliative care concepts in the care of patients with advanced heart disease as we are to cancer.
Anne: I wanted to get back to one of the points that you had brought up too as well and thinking about the cultures that you mentioned of … I guess culture in cardiology, but for also palliative care and thinking about … Just understanding from your point of view as a cardiologist what that culture is currently like.
Haider: Well, what I’ll say is that the culture of cardiology can change from institution to institution. I was in a different place for med school, for residency, for fellowship, and now as faculty, and I will say that I’ve seen variation even within my own experience from one place to another.
Haider: I will say that, for example, right now I’m at Brigham and Women’s and at the VA. At the Brigham, we have an integrated heart failure palliative care service called Heart Pal. This is a service that is dedicated for patients with chronic heart failure. We work very closely with them. We will go around with them. I feel like that level of integration, I’ve not seen anywhere else.
Haider: Then there are other places that I work with where really you couldn’t … And I’ve not been out of training for long as a fellow until last year. As a trainee, you could not get a palliative care consult without essentially having approval from the entire chain of command, if you may.
Haider: And so, there is different levels of integration across communities. But if you look at the national data, it will suggest that, by and large, we’re essentially using palliative care as a, what Tony Bach recently said, brink of death consult, if you may, that by the time someone thinks that, oh, this patient is seriously ill, they may benefit from having a palliative care consultation, we’re so far down and so close to the patient being close to the end of life that I worry that they don’t get the real benefit of having that additional service.
Eric: So I had a question. There’s an adage, like really good heart failure symptom management is really good heart failure management. What does that additional palliative care consult add to really good symptom management focused on their heart failure by the cardiology team?
Haider: So fantastic question. I think that it just goes to show how heart failure and cancer are in some ways different. If I’m a heart failure cardiologist, or any heart failure cardiologist, when you go to a patient’s bedside, the first thing you ask them is, “Well, how are you feeling?”
Haider: Really other than I would say an ICD, most things that we do in heart failure are focused on helping people both live longer and feel better, which may not be true for other therapeutic areas in which you may get a treatment that may make you feel poorly, but may help you live longer. So there is that difference between … So I would say that there’s that one specific difference.
Haider: Having said that, if you look at most large studies, dyspnea is not the only symptom that many patients with heart failure experience. Depending on who you ask or what study you look at, patients with heart failure have a wide array of symptoms beyond just, “I can’t breathe,” or, “I feel like an elephant is sitting on my chest.”
Haider: I feel like that’s where some of our blind spots may in fact lie, where even though as a heart failure cardiologist, I might be very focused on the patient’s heart failure, I might be very focused on their volume status, but, again, that my training points may make me very adept at managing those symptoms. But there may be a lot that I may be not even asking my patients, not even addressing, and not, frankly, be trained well to take care of.
Haider: But I think what you’re indicating with your question shows is that we still have more to understand about what is the value-add of palliative care in a patient with advanced heart failure as opposed to cancer. As much as I feel and I truly believe that there’s a significant value-add, what that specifically means, I think, is an area that we really need to study further.
Anne: I just want to get back to one thing you mentioned, which is thinking about your training in that and that training in those other symptom needs and thinking about other questions that, as a training in cardiology and heart failure, is not something that’s thought of.
Anne: One of the things that I really liked in your article, if Dan Meyer was thinking about how … I think the quote exactly was education in palliative care could be mandated for cardiologists, and thinking about the demands that the number of patients with heart failure, the number of patients who have palliative care needs far exceeds the number of palliative care specialists. So how do we narrow that gap and how do we train cardiologists in palliative care as well?
Alex: Just to note, for our listeners, we’re talking about Haider’s New England Journal perspective with Diane Meyer about heart failure and palliative care.
Haider: So I think that that’s really an area where we can really make a high impact and I think that’s where people like myself, people who are passionate about this field but are not necessarily experts in serious illness communication the way palliative care physicians are. I think partnerships there are extremely important.
Haider: There are places that have integrated more palliative care and communication skills into their training. Again, at Brigham and Women’s, for example, all the fellows, and I believe all the faculty, get a dedicated training via a palliative care specialist in communication. But if I’m right, I think that’s the only program that I know of that specifically mandates that as part of their curriculum.
Alex: I should say that’s new. I trained there. I did internal medicine residency, did palliative medicine fellowship there, 2002 to 2006, and none of this existed. So this shows you that we can change and we can build these services that are co-managing, integrated, Heart Pal, a brand new service, if we have the will and the resources and the culture shift to do it.
Haider: I think part of that culture shift is being is not coming from the top-down, it’s coming from the bottom-up, because now you have a lot of residents who trained in internal medicine and who got just great, fantastic palliative care experiences who are now becoming cardiology fellows, who are now beginning to graduate and become faculty members. They’re looking at their field and thinking about, “Jeez, this is very different from … ” This is a field that is really ripe for innovation. It shows how much even a few individuals can make a difference.
Haider: I will say that at a place like, for example, the Brigham, we have a fellow who just finished cardiology fellowship, is now doing a palliative care fellowship and is doing advanced heart failure fellowship next year. This mandated training was actually … She is spearheading it as a fellow.
Haider: So it goes to show that even though it may feel like, oh, we’re decades behind, we can really make a difference. If we make the right pitch, I think people in leadership positions are now much more open, even within cardiology, which is still not there yet, to accepting more patient-centered ways of taking care of their patients.
Haider: So I am very, very encouraged that we will continue to see a change, and the change is going to come from our newest fellows, from some of our youngest faculty members.
Anne: How do you go talk about palliative care when you talk about it with your trainees and with your fellow cardiologists?
Haider: One of the things that I say is that if you look at, for example, advanced heart failure. So if you go to congestive heart failure service, we’ll have a census of about 16, 17 patients. For most of them, what we are essentially doing is we’re providing palliative and supportive care, we just don’t call it that.
Haider: If you go to a heart failure service, let’s say you have a census of 16 or 17 patients, most of the patients on that service will not be candidates for an advanced heart failure therapy such as a heart transplant or an LVAD. Then of those patients, many may not be patients who can tolerate your usual heart failure medications. Many patients we’re starting on inotropes essentially as a pure palliative therapy.
Haider: So what I tell others is that a lot of what we do in routine advanced heart failure care is palliative care, we just don’t call it that. Because we don’t call it that, we don’t think about it with intention. We don’t think about, well, how can we get better at this?
Haider: And so, one of the things that I do is really to just open people’s eyes so that they start thinking about, well, jeez, this is a big part of what we do. This is not a niche field. Whenever I introduce myself and I tell people that, oh, I’m interested at the intersection of heart failure and palliative care, many people will say, “Oh, that’s a great niche,” and I say, “No, this is actually most of what we do.”
Haider: I think, first of all, I try to sensitize people to the fact that this is a big part of our jobs, and that if you are going to be a good cardiologist, if you want to take pride in yourself as a good cardiologist or a heart failure doctor, this has to be a really central part of what you do. Really some of the best primary palliative care I’ve seen is delivered by advanced heart failure doctors, even though they may not necessarily think of themselves that this is the main part of what they do.
Haider: I think part of how I introduce this is by removing this notion that palliative care is only for a subset of patients who are essentially at the end of life or within the last few days or weeks of life, but really trying to extend that to really a large proportion of the patients that we see and the work that we do.
Alex: I was going to ask … This may take us down on this rabbit hole., so wee don’t have to go here, but I was going to ask if you think that hospice is a good model for people with heart failure? Is part of the reason that people are discharged from the hospital to hospice so close to death or that they enroll in hospice so close to death because hospice isn’t designed fundamentally to meet the needs of people with heart failure?
Haider: I would have to agree with you, and it may not just be hospice, but how we use it. But certainly the way I think about this is that if we keep using prognosis, for example, as an entry point to hospice, if the whole idea of hospice is that, oh, when you can confidently say that someone has limited prognosis, then you enter into hospice, I would think that will not work.
Haider: The other issue with hospice is that I think hospice works if you have some type of outlet for exacerbation. If you have a model in which you can allow concurrent therapy, so if you can allow provision of IV diuresis or some type of intermittent escalation so that you can stabilize patients and keep them there, I think it’s a model that will work better.
Haider: I think this idea that once you go to hospice and, oh, if you need … Then if you have a heart failure exacerbation, you either have to continue in hospice and do the best you can with whatever options you have or you have to essentially disenroll from hospice, come back to the hospital. We see a ton of that.
Haider: I see a ton of patients. Just two weeks ago, we had a patient with end-stage heart failure. We spent more time on that patient that any other patients on the service because it’s such a difficult decision. The patient eventually went to home hospice, was back after a week and in the hospital getting IV diuresis.
Haider: So the way I think about this is that I think hospice serves a lot of our patients very well. But if you look … And we had this recent paper in JPSM, in which we looked at a proportion of patients with specific disease states and how many of them died in a hospice facility.
Haider: So you could argue that a hospice facility might actually be better for heart failure patients because you can provide more intensive treatments there. Of I don’t want to say the 10 most common causes of death, patients with cardiovascular disease were the least likely to die even in a hospice facility.
Haider: So no matter how you look at it, the current system is, just for whatever reason, for a multitude of reasons, is just not meeting the needs that these patients have. So I definitely think this is an area that is ripe for disruptive innovation.
Eric: We talk about the needs to train cardiologists around palliative care. How much of it is the need to train palliative care providers, hospice providers on how to take care of hospice patients at home or in these facilities?
Eric: For example, you don’t see a lot of people getting a lot more aggressive with oral heart failure medicines or switching from furosemide to something else. Is there that need for some kind of cross-cultural teaching?
Haider: I think that there’s a huge need. I think unless we start partnering with the different specialists and clinicians who are part of the ecosystem of these patients, we’ll just never know. I mean I’ll give you a small example.
Haider: I did a small survey of hospice nurses in North Carolina, which is where I was at that point. I asked them a question. Part of the survey was getting to that exact same question that you asked, how comfortable are, say, hospice nurses, for example, in that case comfortable taking care of patients with heart failure?
Haider: The first question I asked them was what are the most common symptoms that your heart failure patients have? The distribution was very similar to what you would see or expect. Fatigue was up there. Dyspnea was up there. Then we reframed the question and we said, “Well, what are the most challenging symptoms that these patients have?”
Haider: Then there was a whole different distribution. Ascites showed up, and I was very confused. I was like, “Wow! I never thought that this would be so commonly seen as a challenging symptom amongst heart failure patients,” even though now, in retrospect, makes sense. Confusion came up, anxiety came up.
Haider: We asked them, “Are you comfortable with diuresis?” Most people said yes, but I think in practice we know that … I’m not sure if we’re getting the most bang for our buck when it comes to just simple heart failure therapies.
Haider: So I completely agree with you. I think unless we don’t have these sort of partnerships between the heart failure community and the hospice community and the palliative care community and really everyone, we’ll just not be doing … I think there’ll be big misses that we’ll make. There will be rooms for improvement.
Anne: When I think of these patients too, I think there’s that room for improvement with these are just patients with end-stage regular heart failure who aren’t even getting the advanced therapies that we’re talking about. And so, thinking about that growing population as well of patients who are getting destination therapy LVADs and what does their care look like and what does their end-of-life care look like, trying to better understand that.
Anne: What would you explain to a hospice provider? I mean not all hospices can take LVADs even to begin with, but what would your … You wrote some articles about top tips, but your top tips for listeners about thinking about those folks who have LVADs?
Haider: Yeah. As far as LVADs are concerned, it’s one of the most extreme medical inventions we’ve ever come up with. I mean this thing is unlike anything else. I will say that the vast majority of patients with LVADs still die in the hospital, unfortunately.
Haider: You might argue that that may not be such a bad thing. This is an intervention. This is an intervention that is highly complex. As soon as you turn off an LVAD, essentially all the medications in your bloodstream might stop circulating. So you may have to pre-medicate … If the decision is to stop an LVAD in a patient before they pass away, the home may not be the right place for that type of patient.
Haider: But one of the things that I feel, and this is, I think, true in cardiology, is that a lot of times we focus on these advanced therapies. But advanced therapies are such a small part of the pool of patients with heart failure, less than 1%, that we forget that, well, 50% of your heart failure patients have HFpEF. So these are patients you don’t even have any oral therapies for that can modify their disease course.
Alex: Can you just, sorry, explain HFpEF for our listeners who may not be familiar?
Alex: We didn’t have HFpEF when I trained.
Haider: Yeah, we had diastolic heart failure.
Haider: So just a brief primer, heart failure is a clinical diagnosis of a condition in which essentially the heart is unable to meet the needs of the body. Traditionally, heart failure is essentially characterized by patients who had reduced ejection fraction. Ejection fraction, essentially how hard your heart is squeezing. If that squeeze becomes limited, that’s assessed by echo or other imaging modalities, then you have what’s called HFrEF, which is short for heart failure with reduced ejection fraction.
Haider: These are the group of patients every time we have … All these heart failure therapies, we have a bonanza of treatments for these patients that can modify their quality of life and their survival. So we have medical therapies, we have devices such as defibrillators and other types of special pacemakers. These patients are candidates for left ventricular assist devices and so on and so forth. So these patients have a plethora of interventions that we can give that can really make a huge difference to their overall outlook.
Haider: But then what we’ve seen is, over time, about half of our patients with heart failure … And these are patients who are relatively older, who have more comorbidities, have preserved ejection fraction. So they have clinical heart failure but, their heart squeeze is not the issue. It’s just that their heart becomes stiff. And these are patients for whom none of the traditional things that I’ve already mentioned, like ICDs, like medications, like LVADs have really any proven role to change their quality of life or their survival.
Haider: And so, you would think that, oh, this a group of patients that have a highly symptomatic condition, that have multiple medical comorbidities, and often in older individuals. So this would be a perfect population that would benefit from a palliative care intervention, and yet we’ve known that actually these patients are even less likely to get palliative care referrals than patients with reduced ejection fraction.
Haider: In fact, when I mentioned earlier that physicians are very bad at assessing prognosis, they’re especially bad in assessing prognosis in patients with preserved ejection fraction because one of the tips that I gave that paper that was briefly mentioned is that a lot of times when we look at these heart failure patients, we look at their ejection fraction and we think, “Oh, this patient has a low ejection fraction,” “Oh, that patient’s going to do much worse than a patient with a normal ejection fraction.”
Haider: Yet if you look at the studies, what it shows is that ejection fraction is not prognostic at all. In fact, an older individual with heart failure, the survival of a patient with HFpEF is essentially the same as the survival of a patient with HFrEF.
Haider: So ejection fraction, even though it’s such a central way that we get a sense for what’s going on with this patient with heart failure, it actually doesn’t inform us when it comes to getting a sense for how sick they might be or how much time they might have left.
Anne: On the question of prognostication, are there any models that you use? How do you prognosticate?
Haider: I use something very basic. I will ask myself, would I be surprised if this person were to die within the next one or two years? I use both one or two years. I give myself that wiggle room. There’s some recent data that suggest that … This question is not as useful in patients with heart failure as it is with cancer with, say, cancer, but it is better than what we have.
Haider: The things I look at that I think are really, really important when it comes to getting a sense for if this patient is truly approaching the end of life, so to speak, is recurrent hospitalizations are a big one. A lot of times these conversations start in the hospital. As much as you’d like to live in an ideal world where we didn’t have these conversations, in the hospital that is really where I think most patients are really thinking about these and most physicians are activated and have the resources to actually deploy.
Haider: So recurrent hospitalizations is one. Inability to tolerate guideline-directed medical therapy. So a lot of our patients who are on medications for heart failure like beta blockers or ACE inhibitors. These patients have had high blood pressures for a long time.
Haider: Then sometimes we see that, oh, the blood pressure is getting lower and these patients start to come off their medications, and sometimes people feel like, oh, that’s a good thing, but a lot of time that’s actually a really bad sign. When a patient with heart failure starts to have low blood pressures and cannot tolerate the medications they used to be able to tolerate, super bad sign. It’s a red flag in my book.
Haider: Renal, the kidneys are really, really very closely tied to the heart. So the first thing, renal function, or really any type of worsening end-organ functions such as you start developing cirrhosis, you have worsening pulmonary hypertension, worsening renal failure.
Haider: The other thing I noticed is cardiac cachexia. So basically a lot of these patients come in volume overloaded. So they’ll have big legs, big bellies, and yet they are malnourished. So they may not look like the classic malnourished patient we think about, but that happens very frequently.
Haider: One of the reasons it happens is because a lot of these patients with heart failure, they hide food in their bellies, their intestines, their stomach. They’re engorged with fluid. So they have very, very low appetite. Even though it may look like their weight is going up, but their muscle mass is going down. When I start seeing that, I am very worried about a patient.
Haider: So I always ask about appetite. I always get a sense for what their mental status is like, because a lot of time confusion, cognitive dysfunction can be a common presentation for patients who are approaching more end-stage heart failure. Then obviously we’re running into situations where a patient may need … We’re thinking of things like inotropes, et cetera. That’s definitely a big red flag.
Haider: So those are some of the things. Just to reiterate, recurrent hospitalizations, worsening end organ dysfunction, cardiac cachexia, essentially malnutrition, anorexia, needing inotropes, and inability to tolerate heart failure therapies because of low blood pressure. These are some of the big things. When I start seeing those, I start to become concerned about a patient.
Eric: Yeah, I always think about the recurrent hospitalization. There is a study from over a decade ago, and it’s the only one I’ve seen where it didn’t just look at their first hospitalization, but it’s split, recurrent hospitalization and the decade of age that they were in. So those were younger than 65. You can have one or two multiple repeat hospitalizations, and they still may do okay, versus the 85-year-old. When they’re in their second hospitalization for heart failure, that’s an incredibly bad prognostic sign.
Eric: Then we often see this. It’s like we tune them up in the hospital. We discharge them thinking magically everything’s going to change the second that they go home, but it doesn’t. Isn’t it right? We’ve seen pretty significant improvements in hospitalization, in hospital mortality, but really 30-day mortality hasn’t really changed much post-hospitalization.
Haider: In fact, if you look at a population-wide level, heart failure mortality has actually started to creep up over the last recent years, which is very different from ischemic heart disease, which is still seeing continuous reductions.
Haider: Just another nice tidbit for listeners, so if you have a patient who’s older than 65 … What I’m quoting this from, a study that was done of Medicare patients only. You have a patient who’s been hospitalized for heart failure. So not recurrent hospitalization, it’s any heart failure.
Haider: Any older patient with heart failure in the hospital, their median survival is 2.1 years. So, again, if you’re older, that’s going to be lower. If you’re on the lower spectrum of the 65 and beyond group, it’s going to be longer. But that’s a good number, at least in my mind, as an average. These are data from the AHA’s Get With The Guidelines heart failure registry.
Haider: In this group, whether you had low EF or whether you had normal EF, no difference in survival. So one key number that I keep in my mind when I’m teaching residents or interns is to have this 2.1-year number in mind when you have an older heart failure patient.
Haider: The younger patients, you’re right. I mean heart failure is a diagnosis. Heart failure is a very strange term, let’s just be honest. I mean a lot of patients, when they hear heart failure, they can freak out. They really feel like their heart is failing, even though they might be able to live decades with this condition. So the younger patient, the heart failure may have a much longer time and may have to live with this for much longer than some of your older group that you just mentioned.
Anne: You just brought up a great point that I was thinking about too, just how we talk about heart failure. Some of those numbers of 2.1 years can be shocking, I think, when you first hear it because for a lot of us … Well, speaking to internal medicine-trained, you’re so used to seeing heart failure on someone’s problem list, and you don’t think of it as a terminal diagnosis the way you think of metastatic lung cancer.
Anne: I wonder how you explain that to patients as well too in terms of … You talk about this in your book too, but thinking about how we explain heart failure, how we communicate what that disease looks like.
Haider: Yeah. Even though I feel like I’m already becoming a crusty old attending in the sense that I already have my own spiel when I have a new patient with heart failure. So a new patient with heart failure, and a lot of times these patients are relatively young, I tell them that this is a condition that you may have for life. You will have peaks and valleys. So you’ll have peaks where the condition gets worse and you’ll have valleys where it gets better and you almost forget you have heart failure.
Haider: My goal is to keep you in the valley for as long as possible. With medical therapies, with procedures or devices, I want to make sure that I keep you in that long, stable phase of heart failure for as long as possible. But at the end, you will still have those peaks. Once we get there, we’ll see what we can do about it. We may have to make some difficult decisions. Depending on where things stand, those difficult decisions might be some type of procedure or it may be just intensifying medical therapies.
Haider: But that’s really how I frame it to patients. I don’t want to discount the fact that they may eventually get worse from this condition, but I also want to tell them that if you engage with me as your cardiologist, if you do all the hard things that come with being a heart failure patient, which is to take your medications, watch your diet, exercise blah, blah, blah, blah, blah, it’s a really tough condition, then you may be able to stay in this valley for a long period of time.
Haider: So that’s my spiel when I meet a patient who’s had a relatively new diagnosis of heart failure. The reason I talk about this is because I also want to let them know that this is not a … A lot of patients, I think, they think of heart failure essentially like cardiogenic shock, that the heart is actively failing and that it can cause a lot of distress.
Haider: Part of the spiel is to offset some of that, but also to let them know that this is not going to be a walk in the park, that this is a hard thing to do, but not something you don’t have agency over. But that if you do, in fact, do all these things, the overwhelming amount of evidence suggests that we should be able to let you live a pretty good life.
Eric: I’ve got a question about … You mentioned medications. I think one of the challenges with medications for heart failure is people are put on so many of them, because they all potentially have this incremental, some of them rather small improvement, whether it’d be symptoms or quality of life.
Eric: One of the challenges we see in our hospice unit is that they come in, we have no idea what they’re actually taking at home. They’re probably not taking anything. We just start them on their diuretics and all of a sudden they look great. Maybe we add a little bit of ACE inhibitor for those patients with reduced ejection fraction, and they’re looking great. But we’re not adding the statins and everything else. Sometimes they just graduate because they look fabulous afterwards, because they’re finally taking their diuretics.
Eric: When you’re thinking about this, especially for our palliative care geriatrics audience out there, how should we be thinking about these medications near the end of life? When we’re thinking about symptoms being much more important than adding more days to their lives, how would you prioritize them?
Haider: This is where I think I struggle … As a heart failure cardiologist, I am vetted to these medications. These are things that I love and when I can have a patient on all these heart failure therapies, it makes my heart flutter, metaphorically speaking. But at the same time, I’m also thinking that, jeez, if this is a patient with a limited lifespan, what is the potential benefit?
Haider: So there are a few medications that we have good evidence for. So statins you mentioned. A trial done by Amy Abernethy essentially showed that discontinuing statins for patients who are seriously ill does not change their outcomes. So statin is one of the first things that comes off and aspirin is another one.
Haider: The heart failure therapies are a bit challenging because of something you’ve already said, that some of these medications can actually improve your quality of life. So, again, depending on the situation and depending on how they’re tolerating it and depending on how burdened they feel with their medications, if a patient is [inaudible 00:43:39] they become hypotensive and their kidneys are getting worse, et cetera, et cetera, then I have a low threshold to just say, “Hey, let’s just focus on symptoms.”
Haider: But if a patient is tolerating therapies and is not feeling too burdened by the additional medications, or if they’ve tolerated their medication for a long period of time, maybe I’ll hold off on something like the beta blocker or the spironolactone until later because I feel that this might be giving them some functional benefit as well.
Haider: But it’s a tough call, and I feel like, as we’ve mentioned, we have not really studied this. We know that stopping heart failure therapies in patients who have … In younger patients whose ejection fraction has recovered, taking away these medications can be bad for these patients. But we really don’t know what to do for these patients who are really approaching the end.
Haider: If you look at hospice patients, for example, I mean if you’re saying that their average survival is 11 days … And, yeah, of course … I mean then how much benefit can these medications be giving? One of the things that we found in that same paper was that a third of these patients or half of these patients were being discharged to hospice on statins, on their coumadin or on their aspirin or on their ACE inhibitor or under metformin.
Haider: What to me indicates that even when we discharge these patients to hospice, we just don’t know, a, how sick they are. We’re not being as thoughtful as we could be with regards to simplifying their medication.
Eric: Yeah. Can I ask for one more practical tip? You had a great article in JPM on tips for palliative care clinicians caring for heart failure patients. We’ll include that as a show link. Diuretics. Any tips for our hospice and palliative care clinicians on choosing or dosing diuretics for people with very advanced heart failure?
Haider: I would say that as far as diuretics are concerned, if a patient’s volume overloaded, then don’t worry about the diuretic, even in patients who are not on the hospice and, in general, patients you see in the hospital. If we give diuretics to a patient who’s volume overloaded and their creatinine goes up, those patients actually do better than the ones whose creatinine does not go up.
Haider: The reason is that you gave the diuretic and it actually did what it was supposed to do, which was actually contract the patients to in fact get that extra fluid off. And so, I have the same type of mentality for patients who may be on the hospice end of things, who we may not be getting labs on.
Haider: If a patient is volume overloaded, don’t be afraid of going up on the diuretic. Going up on the diuretic means that if you give a diuretic dose, it doesn’t work, double it. So if you give someone 20 of Lasix and they’re still volume overloaded and they’re not feeling better, the next dose should be 40. It should not be 30. If the 40 doesn’t work, try 80. If the 80 doesn’t work, then switch to something else. Switch to something like torsemide, which is much better absorbed through the intestines than furosemide is.
Haider: For me, I have a very low threshold for if you’ve exceeded 40 or 60 or 80 of Lasix dose and it’s still not working, I very quickly will switch to torsemide, because it just works better. Then if that’s not working, think of other medications such as … Metolazone is one that can work very effectively. Depending on what the patient’s goals are and what the situation is, you may want to give some additional potassium because it can cause a lot of hypokalemia. But if it’s really just for symptoms, then you can just give that medication. It’ll make people pee.
Haider: But I always ask my patient, I always ask … We had a recent patient who was getting inpatient hospice. I asked them, “Do you want to get rid of this fluid or not?” because a lot of our patients are just so tired of their diuretic, of peeing all the time. Just that extra urination causes them a lot of just discomfort having to go back and forth to the …
Haider: So I always ask them, “Do you feel like you have extra fluid on? Do you want me to help with it?” If their answer is, “Yes, I would like to get the fluid off,” then I feel like, okay, I can give this patient … I can give them metolazone. I can give them the torsemide. I just want to get the fluid off.
Haider: And so, we have a lot of oral options for diuretics that we can use before we have to switch to IV. So I would suggest that in that paper, there’s a nice table that … And we have a small section on just how to think about these things, because I really feel that diuretics are medications we should be very comfortable with giving, even in a place where we may not be able to get daily labs, et cetera.
Anne: I just want to thank you so much for taking the time to meet with us and share all of your expertise. I think Alex will have some more song to play before we end.
Haider: I would like to thank all of you. I feel so lucky to be a small part of such a wonderful community. Being here was just a tremendous honor for me. So thank you for inviting me.
Alex: We have to thank you. You are one of the young bright leaders, a thought leader, a public intellectual, a remarkable combination of a cardiologist with a strong interest in palliative care and a terrific writer writing in The Washington Post about, “Should we change the name ‘palliative care'”, writing for the Lay Press with your books, and for writing research articles in big journals, in palliative care journals, really a leading figure in the field. So thank you so much for joining us, Haider. I really appreciate it.
Eric: Okay, Alex. Let’s hear it.
Eric: That was fabulous, Alex. I like how you just put yourself out there.
Eric: Haider, thank you again for joining us today. It was awesome having you. Same thing, Anne.
Alex: Thank you, Anne.
Anne: Thank you.
Eric: And to all of our listeners, thank you for supporting the GeriPal podcast. Again, if you have a moment, please share this podcast with 10 of your closest friends or colleagues. Thank you as always to Archstone Foundation for your continued support. Goodnight, everybody.
Haider: Thank you.