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"Palliative" Inotropes?!?: Podcast with Haider Warraich

In your clinical experience, you may have cared for patients receiving palliative chemotherapy and wondered, hmmm, why is that called “palliative” chemotherapy? We’ve written about this issue previously here at GeriPal (“a term that should be laid to rest”) as has Pallimed (“an oxymoron”).

Well, now we have “palliative” inotropes for people with heart failure.  And we have to ask, is this a fitting term?  And the answer is...complex...more so than you might think.  Recall that in one of our earliest podcasts, we talked with Nate Goldstein who memorably proclaimed “the best palliative care for heart failure is treatment for heart failure.”  

To unpack the issue of palliative inotropes, we welcome back Haider Warraich, a cardiologist with a strong interest in palliative care.  We are joined again by Anne Rohlfing, palliative care fellow at UCSF who spent last year as a hospitalist on the heart failure service. 

Please tune in to hear more about the role of palliative care in inotrope therapy, inotropes in hospice, Haider’s study on palliative needs of patients with heart failure, and a bit about Left Ventricular Assist Devices (including a shout out to Dan Matlock’s decision aids) and Haider’s Journal of Palliative Medicine paper on top 10 tips for palliative care clinicians on caring for patients with LVADs.



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

Alex: This is Alex Smith.

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

Alex: Well today, we're welcoming back to the GeriPal Podcast Haider Warraich, who is a heart failure specialist, does research, writing, he's interested in palliative care. He's at the VA in Boston and the Brigham and Women's Hospital also in Boston. Welcome back, Haider.

Haider: Thank you Eric and Alex for having me back on the show to talk about heart disease and palliative care.

Alex: And we have Anne Rohlfing who is a palliative care fellow at UCSF and will be an attending at the VA in Palo Alto in a short month or two, and she's going to serve as a guest host today. Welcome back, Anne.

Anne: Thanks. It's good to be back.

Eric: She's our editorial fellow for this and the last podcast. So, I'm actually going to turn it over to Anne. Anne, do you want to give a one sentence description of what were going to be talking about today?

Anne: Sure, yeah. I think compared to our podcast with Haider when we talked more broadly about heart failure and palliative care. This time, we want to dive a little more into some of the complex therapies, such as inotropes and VADs and swerve how we should think about those therapies in our palliative care world. Before we do that, let's start with the song request.

Eric: Those are my words. Okay. Go for it, ask Haider.

Haider: As a returning guest, I thought I would put Alex back to the test. As some of you might know, I grew up in Pakistan and I figured I had so much fun having Alex sing in my native language of Urdu last time that I would pitch another Urdu song. This one is called Dil Dil Pakistan. It's essentially a pop anthem from a band called Vital Signs in Pakistan. Every kid in Pakistan has grown up listening to it. I might start crying during the middle of the song, but I really wanted to see and get to hear Alex's take on it.

Alex: You will not cry when I sing it. We guarantee you that. [laughter]

Eric: Have you noticed, Alex, whenever we have a cardiology or somebody who is in the cardiology field like Dan Matlock, they always test you with the hardest songs.

Alex: They always test me. I know. Well, here it goes. Urdu, take two. (singing)

Eric: How did he do, Haider?

Haider: Unbelievable, unbelievable. I do joke that sometimes the best diuresis is through tears, and I... Certainly, this is quite potent. Thank you, Alex. This was really moving.

Eric: Okay, Anne. I'm going to him back to you. How do we want to start off.

Anne: I think, I'm starting off this podcast today with thinking a lot about patients I had taken care of when I was on the heart failure service as a hospitalist at UCSF. And thinking about palliative inotropes in particular. There was one patient case that stuck in my head. Was an older patient with end stage heart failure, too old for transplant, admitted in the hospital. Eventually went through the process workup for an LVAD was declined for LVAD. And they decided with his cardiologist to go home on palliative Dobutamine.

Anne: When they left the hospital still have an active ICD in place. And in our area, we don't have any hospices that support palliative inotropes. So went home with just telehealth nursing, picc line in place, et cetera. And so the plan was we would refer to outpatient palliative care as sort of some ongoing continuity of care in addition to the cardiology team. And discharged on a Saturday and then the next week I actually heard from the outpatient palliative care nurse who does the screening calls for clinic referrals.

Anne: And she was like, "Did you know your patient had passed away?" And I was like, "No, I had no idea." But she had called to follow up on the referral and to make an appointment and the partner was really distressed, apparently had passed away that night after discharge. And just thinking about now what I've seen in my year fellowship in terms of support that either once palliative care has already been involved and has been following the patient or hospice support, bereavement. Think about all these things that just weren't there and weren't in place to support this patient and their family. And so that's what I've been thinking a lot about. Prior to talking about this, but I'd love to hear just a little bit more, when you think about palliative inotropes, who you think of in general as the patient population, who are appropriate candidates.

Haider: Anne thank you for sharing that story. And I've thought a lot about palliative inotropes. And I feel like especially when it comes to more advanced forms of heart failure, this question comes up all the time. As you've already outlined some of the challenges that we faced with regards to having someone on palliative inotropes. One being that very few hospice agencies will even cover this therapy. So in essence, the moment you make this decision, what you're doing is you might be limiting someone's options in care quite drastically.

Haider: I am a heart failure doctor. I am obsessed with right heart cath numbers, hemodynamics, et cetera. But when it comes to palliative inotropes, I take all of that out of the picture. And I really focused on them as I would any other palliative care therapy like morphine or diuretics. Is the benefit that someone's feeling, a quality of life benefit that someone's experiencing, does that outweigh whatever sort of risks or hassles that might come with the therapy?

Haider: And so the burden of proof is really on inotropes to demonstrate are they helping that patient or not feel better. Not just improve their numbers, not just improve their cardiac index, so to speak, but is it providing a functional benefit. And I would say that that proportion is quite small, especially in patients who are more advanced. Before I think about a palliative inotrope the first thing I want to do is I want to talk to the patient, and I want to explain to them what inotropes do.

Haider: And the one thing that we know that they don't do is that they do not increase survival. And I think that's a really, really important thing. Because as we've seen with the data with palliative chemotherapy, very few patients actually might know that, to begin with that this therapy is not likely to increase their survival. And if anything, there are randomized control trials that suggests that people's survival can be shorter on chronic home inotropes. I think everyone who has been initiated on this therapy should definitely have a palliative care consultation.

Haider: While I am a proponent for primary palliative care in the cardiology space, I think this is such a advanced therapy and with so many dimensions that I really think that this is something that cardiologists should not take on without having some type of subspecialty assistance.

Haider: There are two main types of inotropes that we have. Dobutamine, which you mentioned for your patients, and Milrinone. Milrinone is a bit more long acting. So I actually like it better for the outpatient setting than Dobutamine simply because it's going to stay in folk's system if they have an interruption between say, changing over a bag or something, or if the picc line falls out, et cetera. The one issue with Milrinone is that it is renally cleared. So in patients with renal failure, they may have elevated levels.

Haider: And then one of the other things that you've already mentioned, is how do we deal with folks who have ICDs. Because we do know that inotropes do increase your risk of an ICD shock. So especially in the palliative setting that we're discussing, I strongly advocate that the ICD be turned off in these patients, if that is aligned with someone's goals. And then the other thing that I do while I'm in on the inpatient side is I try my best to wean these things off, to be honest with you.

Haider: I think that they are burdensome therapy. I think there's a very small number of patients who actually benefit from it. But if we are going to send folks out on inotropes, to home or hospice or palliative care or some type of setting, I think what we can do is actually come up with a weaning protocol. Now one of the, I think, things that hospices, palliative care agencies are very nervous about is someone comes out on Dobutamine but what's the plan? And is this going to be a lifelong thing, et cetera. So coming up with a stage way to reduce the dose gently over time is a way to essentially ease that transition from the hospital to the home setting. So those are some of my sort of general thoughts about inotropes. And they're complicated and I think that the decision should be not made lightly. I think it's a complex and we need to make sure do patients actually know what this therapy is doing?

Eric: I got a question. So we did a podcast, I think a ways ago, talking about LTACs and how your likelihood of going to LTAC is how close your hospital is to an LTAC. So huge geographical differences in use of LTACs. I also feel like with inotropes, home ionotropic therapy, here at the hospital I work at different than what Anne's talking about I can't remember the last time we sent somebody home on home ionotropic therapy. Versus I'm guessing it happens a lot more at UCSF. Big, big academic tertiary center. Do we have any information about the geographic... Who's more likely to get this therapy. The patients are, there's some differences. But that's not explaining all of these differences that we're seeing in the use of this type of therapy.

Haider: There is a lot of variation in heart failure management in general, especially the more advanced patient. And I think part of that has to do with are you working in a sort of LVAD, or Transplant Center where oftentimes physicians are more used to using these medications. I worked at hospitals that didn't have a transplant program. There, I felt like the use of inotropes was very, very limited. And so I rarely saw patients being sent out on them.

Haider: Certainly, I think that one very large population, that is not a candidate for inotropic therapy are patients with HFpEF. So people who have preserved ejection fraction. But then when I work more at transplant centers for we use inotropes, for other purposes, and they're just more available, people are just more using them for other indications. I think a lot of times, we just have that practice pattern where someone is failing or has advanced cardiac disease we often read will reach for the inotropes.

Haider: But then when the context changes, when the goal might not be to bridge someone to say, some type of advanced therapy, but the context might be in the setting of someone with advanced illness and limited lifespan, then we might not make that cognitive adjustment that oh, this is totally different. And the trade offs might be very, very different as well. So I do think that if you work in the center that does a lot of advanced heart failure care, including LVAC, transplant, et cetera. The clinicians there are just more used to reaching for inotropes in general, but that might not be the case everywhere.

Alex: Okay, I got to jump in here. Palliative inotrope. Sounds to me like palliative chemotherapy. And we've written a couple blog posts about this back when we're mostly a blog. PaliMed blogged about this before we did back in about 2008. Is the term palliative chemotherapy or palliative inotropes an oxymoron. And they're not equivalent. They're not the same. But I think some of the underlying concerns are the same. In that palliative chemotherapy is often interpreted by patients as chemotherapy that will prolong survival when that's not the primary intent.

Alex: And that I worry that oncologists feel more permissive and giving chemotherapy near the end of life to patients because it's palliative, so called palliative chemotherapy. And I suspect that the same arguments apply to palliative inotropes. And you said early on that it's really critical that patients understand that this therapy is not intended to prolong life. And maybe that's how the label palliative got attached to it. But I don't know and I'm sure that you are also concerned, that patients still will misunderstand this. Hope is a powerful thing, and that they're getting these medication to make their heart beat stronger. How can it not be something that will help them live longer? Should we call it palliative inotropes? Or should we call it inotropes directed at symptom relief? What does it do to attach that palliative term to it?

Haider: So, I mean, that's a great point. And I totally agree with you. I have a very high bar to make the ascertainment that inotropes might be a good or reasonable therapy in someone who is essentially, has an advanced illness and is critically ill and without any sort of advanced therapy options.

Haider: And so under most circumstances, I think that they are an oxymoron. I think a lot of times we start inotropes and without really demonstrating, is it helping someone feel better? Is it helping someone do more? Are the drawbacks of the therapy more than what the benefits are? In fact, I think many folks who work with me on the inpatient side, I wrote this review with a really stellar team, which was led by a fellow at Northwestern, Sarah Chuzi, On Palliative Inotropes for General Cardiology.

Haider: Every single time I'm on service, I share that piece because this comes up all the time. And I will often try and wean this therapy because I do not believe that most people actually feel any different. And I think language really matters. I wish, more cardiologist called these things palliative by inotropes. What I hear a lot is this is rocket fuel. This is going to juice up your heart, it's going to help you heartbeat stronger.

Alex: Oh no.

Haider: Without some of the more... Without listing out that well, yes, but at a price of potentially increased mortality, at least according to the randomized trials.

Alex: Wow. Yeah, rocket fuel is pretty far from palliative inotropes. So clearly, clinicians are not using these terms with patients. Anne you want to jump in here?

Anne: I was just going to ask in the review, you mentioned the data initially from, I think it was like early 2010, 2014 showed that there's actually increasing numbers of patients being discharged with palliative inotropes. Is that something that... Is that trend still continuing? Or anecdotally, is that what you've seen? Obviously not in your practice when you're trying to be really considerate about goals and comfort level.

Haider: I've tried to find the data, and there's small registries of inotropes. But really we don't have a very clear sense of what's really going on. We have seen in heart failure in general things that we know from prior randomized trial data have not been very effective, such as, for example, PA catheters, we know from the largest clinical trials that they don't improve outcomes. We know their use is going up despite all of that.

Haider: I wouldn't be surprised as we have a proliferation of advanced therapies for heart failure, that the use of these inotropes in this setting has also gone up. Where we have seen that gone down is in the patient who is still a candidate for advanced therapies such as an LVAD or a heart transplant. Where I feel like in previous times where many of patients might have just been put on these medications. Now they're now being considered in LVADs and other therapies because unlike inotropes LVADs actually increase survival.

Anne: And so getting back to when you said in your experience, it takes a lot to make you think that this inotropic therapy is a good idea. And necessarily it's going to be in line with a patient's goals and provide them more comfort, a better quality of life. And when you do have a patient who fits all of that criteria, how do you talk about it to them? And how do you explain these risk, benefits, the mortality in terms of patient friendly terminology?

Haider: Well, I think that as far as mortality data is concerned, what I usually say is that we have no data to suggest that it increases mortality. And then as far as quality of life is concerned, sometimes that can be hard to assess in the inpatient side where someone is in bed, isn't really doing much to begin with. But essentially, what I will say is that the only purpose of this medication is to help you feel better. And if you feel better, that's great.

Haider: But then this is also a difficult therapy to manage, you'll have to go home with IV inotropes, et cetera. Is that something that you're willing to do based on this information? And then if they say, yes, then the next question often comes up is, "Is hospice going to cover this?" And I've seen a lot of variation in this. Depending on where you live, and what agencies are in your area, you might have agencies that cover inotropes, maybe for a certain period of time, versus you might not. Which is why I think having these conversation early is helpful, because then it can at least prevent you from running into these barriers at the end before a patient is being discharged.

Haider: And if a patient is being discharged off of inotropes what I often will say is that if you're going to wean this medicine, don't wean it too quickly. Especially the day before someone's being discharged. Because oftentimes patients get... They're hemodynamics get used to these medications, and then they can have a precipitous drop either before discharge or right there after. I found that again, Alex spoke to the power of hope and even when you present this information, there might be some patients who might feel like, "Well I want to take the chance at this medication, especially if it'll help me feel better."

Haider: In that case, I think coming up with the plan, making sure you have a good... Some type of central axis that is durable, is going to be helpful. And then having some type of... And then the education, the caregiver training part is, I think, really, really critical. Most of the companies do a decent job of that. But just knowing that those are the steps that you need to go through before a patient gets discharged. It's just helpful to just come up with a timeline.

Eric: Do you think more hospices should allow and fund home inotropic therapy.

Haider: I think hospices in general should be provided more options to provide more intensive care to patients with cardiovascular disease and other conditions. I think, not specifically tied to inotropes. But really all types of other therapies, including, I would say, IV lasix, this comes up all the time. But then would it be on the top of my list of what I wish hospices could do? No, it would not be. I really wish we could do a better job of aggressive diuresis for patients, because I feel like in the end, I think that is probably the one of the biggest unresolved symptoms for patients.

Haider: So what I would say is that, I think that we need to have more models where more intensive therapies can be provided to patients who are receiving hospice care, some type of concurrent therapy model needs to be a bit more broadly applied. But I wouldn't specifically... But inotrope wouldn't be at the top of my list. If I could pick between IV diuretics versus inotropes I'd pick diuretics every single day.

Eric: Well, I also feel like education of hospice nurses and hospice teams just about diuresis in general, is... We see a lot of people coming from home hospice to inpatient hospice unit. And sometimes just oral diuresis is just not optimized. Which makes it really hard sometimes to prognosticate when we're trying to bring them to the inpatient hospice unit is how much was actually optimally managed. Are you seeing that to, Haider?

Haider: I definitely have seen that and I'm a huge advocate for this. I think the transition from hospital to hospice or something is really, really critical. And if we can communicate with the hospice team, I think that's helpful. We published this data. We surveyed hospice nurses in North and South Carolina. And what do you see there is that patients... I think there's a lot of confidence amongst nurses. And I think it's probably well earned, that there is comfort. If you ask them, "Are they comfortable diuretics?" The answer is usually yes.

Haider: But I think all of us have anecdotally seen that perhaps a lot of times, we're just not that aggressive. And I would say not even aggressive even in the inpatient setting. Here's an interesting tidbit. If you look at all patients in the hospital, so this is National Registry data, if you look at all comers with heart failure who are in the hospital in the United States, only about 1% to 2% of them are discharged with unchanged or worsening symptoms. Which means that during the hospitalization, we help them get better, before they were discharged.

Haider: But when you look at folks who went to hospice 37% have unchanged or worsening symptoms. So what that tells me is that it's not just that hospice might not be being very aggressive diuretics, we on our end, in the inpatient setting, we might be like, "Oh, this patient is hospice-bound, and we maybe don't have to be that aggressive about managing their symptoms."

Haider: So I agree. I mean I've written a couple of papers called 10 tips for heart failure. And one of them is if diabetics don't work, double them. Don't mess around with them in a patient whose volume overloaded, you cannot hurt them with diuretics. And so I think that mentality is as important in the inpatient side, but also definitely in the outpatient side.

Alex: Ototoxicity?

Haider: I've seen that once. And it takes a lot. I mean, we diurese folks all the time. But I have seen it once. But it was in the setting of this patient who had been, and again maybe we hadn't explained to her, had a crate full of high salt tomato soup in her room that she's guzzling down. While we were failing to diurese. I've seen it, I don't think it's that common. Some people with intravenous bumetanide drips or Bumex drips do develop this hyperalgesia syndrome that you might see in the hospital setting. But that's probably one of the worst things I've seen.

Anne: You mentioned earlier sort of weaning protocols and sort of how that works. And I wonder when you're talking about weaning protocols, obviously like you said, in the hospital you want to try weaning, but I'm thinking about our hospice nurses who are trying to manage diuretics and how hospices... I mean, I'm assuming most of them don't have protocols for weaning inotropes. I don't know if in your experience that has ever gone well, with communication with hospice, about how to do that at home or ...

Haider: There have been times and some centers have had success. People haven't published the data too much. So it's mostly based on just he said, she said, or my conversation with a few cardiologists. But again, one of the things that makes hospices nervous is that they might... Again, Hospice is paid on per diem basis, they're worried about these prolonged costs. But if you can tell them that we'll hang a bag of this medication, and then here's a protocol that will allow you to wean this slowly over, say, a week or two weeks, that might give them more confidence to accept more patients with inotropes if that becomes a barrier. But again, part of the whole I think communication in general is lacking, I think, especially on certain non-cancer, disease services, such as heart failure, with hospice, with palliative care, et cetera. And I think that's just another symptom of that.

Eric: Another thing that comes up when we're dealing with this, including IV diuresis, and like ramping it up. And I also want to encourage listeners, if you're interested in hearing more about iV diuresis, check out our last podcast with Haider from 2020, October. But like monitoring, I think everybody's worried about like dropping the potassium, how closely like if they're admitted to hospital, should we be checking labs, following like potassium levels. In the hospital, like we're checking, at least once a day potassium levels, mag level, all of those things. Same at home.

Haider: So I mean, you know cardiologists, you're super nervous about hypokalemia. We're like militant about it. But one of the things I learned during the COVID pandemic, when we essentially for the first month or so, went totally remote. We were managing hundreds of patients with heart failure sitting at home, and all these people were very worried about coming to the hospital. So we were asking people to take Metolazone at home. Metolazone for readers is a thiazide diuretic. It is a very effective diuretic pill. The issue with it is that it can cause your potassium to totally tank.

Haider: The other quick tip about Metolazone is that it's a really long acting drug. So oftentimes, it's a 48 hour type of drug or sometimes even longer. But we've always been traditionally very nervous about giving it in the outpatient setting. But when we didn't have a choice, we would just tell people, "Well take Metolazone and then double your potassium supplementation for the next three days." And we thankfully didn't have any adverse effect.

Haider: So I think that is one thing that if you're worried about hyperkalemia, I mean, I think you could essentially empirically treat patients with just doubling their potassium. In the hospice setting, or in someone with a renal failure. This comes up often. Someone's potassium is four, and in the hospital, we check the potassium... Sorry, the creatinine is four and we check it every day. And now you're going to hospice and patients feel nervous that how am I going to titrate my diuretic based on my creatine. And I think the only thing that matters is volume status.

Haider: So if your volume overloaded, your kidneys are going to be congested, and your creatine is going to be up regardless. So when I see a patient in the hospital the creatinine is important. But the most important thing is their volume status. And you've seen this yourself where folks come in, they're volume overloaded, they're creatine's four, you start decreasing them and the creatine comes down.

Haider: And I think part of what we can do on the inpatient side, and we can do, especially in cardiology, is getting people to move past the numbers. Getting people to... We've trained our patients, sometimes often very successfully, and rightly to focus on the sodium and the potassium and the creatine. And these numbers gain this almost spiritual value in the patient's head where they feel that their entire well being is tied to these numbers.

Haider: But I think part of what we need to... Part of what I often do is helping to shift the focus back on symptom relief, quality of life. And then just telling them that if you are volume overloaded, it doesn't matter to me what the creatinine is. If I'm confident in my exam. And often the best way to... And this often comes up to is how do we know if a patient's volume overloaded, checking the JVD, et cetera, et cetera. Just ask the patient, the patient lives in their body, they know their body best. I ask my patient, "Do you feel like you have extra fluid in your body?" And if they say yes, I just treat it.

Eric: I don't think I've ever heard somebody ask that before. I love that. And the responses that you get are pretty good.

Haider: They're very good. They're really, really good. Especially folks who've... I wish I could... This is going to be a study I would love to do. But you have all these patients and we're twiddling our thumbs and we're thinking, and we're putting them in all sorts of different angles. And sometimes if I'm confused, instead of getting a right heart Cath or looking at their IVC with an ultrasound probe, I'll just ask the patient, "Do you feel like you have extra fluid on board?"

Haider: At first I asked when you get extra fluid, where does it go? Because everybody is different. Some people get it in their ankles. Some people get in their thighs, some people in their back, some people in their bellies, and some people just have initially presented more pulmonary edema, pleural effusions. And if a patient says it often will sway me in that direction. Especially in people who've lived with it for a long time. They know this, they've got this down.

Eric: Oh, my God, this is a perfect study. Do you know how much stress you can relieve from like MS3s, they're your med students. You have a study? An MS3 asking this question versus attending cardiologist doing all their maneuvers?

Haider: Yeah, I would love to do it. I would love to do it. If you have any enthusiastic MS3s around, send them my way.

Anne: I was wondering, I know we've talked a little bit about palliative and inotropes in the beginning and we mentioned briefly in our other podcasts a little bit about VADs too, but I think that's the other major therapy that we think about for end stage heart failure patients. And I think like you pointed out earlier, very different than inotropes in the sense that there is mortality benefit, in a lot of ways, different quality of life benefits as well.

Anne: So I just wanted to get your thoughts sort of on particularly, just so everyone knows, thinking more about destination therapy for LVADs. There are VADs that are bridge to transplant.

Alex: It's the destination.

Anne: Yeah, BTT bridge to transplant ones where the goal is transplant and curative. And then there are folks that won't be transplant candidates but still getting VADs as destination therapy with the intent that is sort of their last heart failure therapy. So I just wanted to get your perspective on, again, how you talk with patients about that given how different it is compared to palliative inotropes.

Haider: Yeah, totally, totally different. And just to explain to folks that the one really good thing nowadays is that VAD therapy has improved quite a bit. So if, essentially, in the United States, the only VAD that we are implanting, or should be implanting in the long term setting is the HeartMate 3 LVAD. And the biggest difference between the HeartMate 3 LVAD, over previous LVAD is that it has an almost negligible rate of VAD thrombosis, so clots forming in the VAD.

Haider: And this is a huge advance because it has a lot of downstream effects. So if you have fewer clot forming in the VAD, you'll have fewer strokes. If you're less worried about VAD thrombosis, then you were less militant about how aggressively you anti-coagulate these patients. But I think in some ways, a VAD is sort of like the same way I pitch transplant patients where I feel like this will make your heart failure better, but in some ways you are exchanging one set of problems for another. We do know and we have robust data that VADs will increase survival and that median survival in patients with VADs is increasing.

Haider: And so one of the areas that we're seeing a lot of growth is in the older patient with heart failure. So someone say in their 70s. So once you're past 70, and your body is not entirely perfect, you have some renal dysfunction, or some lung issue, et cetera, et cetera, transplant becomes a less favorable option and a lot of these patients are now getting VADs. And I think that how I frame it to them is that this is a really burdensome therapy.

Haider: I think patients need to know it's probably much more burdensome than a transplant is, for example. But it's that is something that patients are willing to... But if they go in eyes wide open, and I think that's really what the goal from my discussions with patients is and I think that's especially true for what I think palliative care can do for these patients, the sub-specialty palliative care specialists can do, is not so much is to really have them go into this really intensive lifelong therapy with a broad knowledge about what to expect on the other end.

Haider: And so the way I frame it is that we know that it makes people's heart failure much better. But there are other issues that are related to VADs, complications such as bleeding, hospitalization for issues, infection. But I find that the patients who is interested in a VAD is just phenotypically very different patient from someone who says, "I want nothing to do with this." And that those patients just their risk averseness and their tolerability of risk, and their... Is just very, very different.

Haider: Because the people who will see the infomercials for VAD and be like, "Yep, that's me I want a VAD." Are just very, very different. And I find that their risk aversion is low. And part of it is because they are just struggling with heart failure, and they're just sick of it. And they'll essentially do anything to overcome it. One of the things that's interesting about VADs is that initially when we had a lot of adverse effects with Bad's we felt that, "Oh, this is because we're putting it in very sick patients." But when VADs have been put in less sick patients it didn't actually change the rate of adverse events. So really, a lot of the adverse events that are associated with VADs are just specific to the device itself, rather than more patient related factors.

Eric: So we had a podcast on with Dan Matlock back in 2018, about his decision aids and destination therapy. One quote that I remember from that podcast was that every destination therapy eventually becomes a hospice therapy. How do you think about not just whether to put a device in, but also be happy to hear your thoughts about decision aids like Dan's in this. But also, how do you decide when to stop it? And do you? And what does that look like?

Haider: So first and foremost, shout out to Dan. Dan the man, and what a study Decide if LVAD. If you have time, if you're interested in how patients think for any condition, you need to go read that study and that trial. It's amazing. Yeah, I think that first of all, I think what we need to sort of clarify is that stopping an LVAD is not suicide first of all. And I know this may sound weird to this audience. But there's a sizable contingent of an in one study cardiologist who think that stopping LVAD is the same as euthanasia. And I think that that's not true at all.

Haider: In fact, one of our fellows, Katie Manning is going to speak on that in just a couple of days, at her grand rounds here at the Farber and Brigham. First of all, I think what we need to do is we need to tell people at the time of implantation, that at some point, that this decision may come up so that we can have clarity about what a patient might want in that setting, before someone is incapacitated, et cetera.

Haider: And that these, in fact, can be stopped. And that this is not suicide, you're not a prisoner of this technology. Just because you do not want this therapy any longer and you decide that you want to shut it off, that doesn't mean that you're committing suicide. Because just using that word is such a loaded term, with so many cultural connotations, I think you make a hard decision even harder.

Haider: There are two main settings where LVAD withdrawal or decommissioning an LVAD, whatever term you want to use comes up. One is in the setting of a catastrophic complication, massive stroke, massive GI bleed, device failure, et cetera. And I think that those decisions, in some ways are easier. Because there's a huge inflection point from between where the patient was before the event and where they are now. The harder decision is in patients who have a consistent decrement in quality of life, and people who at some point feel like, "I'm done. I am done, I don't want this." And these are patients who might be awake, who might be conversational. And these can be really, really hard decisions.

Eric: We see the same thing with pacemakers. Occasionally we'll see people who are outwardly looking fine ambulatory, walking around, no other big symptoms, but just decide, "I'm done. I want this medical therapy turned off." And I can only imagine that. We have a lot of ethical issues with that. And now we have this other device that we can't see sitting in somebody's body, and they're asking them to turn it off when otherwise they're not dying.

Haider: And I support patients to the Nth degree as far as this is concerned. Because I don't think that under any circumstance, we should be putting technology in patients that they don't have the right to turn off. Because if that is the case, and we shouldn't be putting it in the first place. So I feel fairly strongly about that. Because I think that we cannot expect a patient to make that type of life contract, where if you get this device under some type of arbitrary metric we can decide or not whether you as a person has a right to stop a medical technology. Can you imagine if we did the same thing for ventilators? Thank God we don't.

Haider: I think that one thing that is useful here is, and as a fellow there are a lot of stressful situations that I was in. And this was one of the most stressful ones. And I would seek them out because if I knew that some LVAD's being deactivated for one of our patients, I would go out of my way to be there. And so there are a lot of things I've learned during that experience. One is that I do think that it is really...

Haider: If you have an LVAD patient, and they have approached phase where they want to have that device deactivated, I really think it should happen in the hospital, not at home. One of the things that can happen as soon as you stop an LVAD is someone's circulation may stop. Many patients may have their aortic valve over sewn, so they get no blood flow across the aortic valve, they're entirely dependent on their LVAD. So if you're going to give them medicines that are going to keep them comfortable, such as opioids, or benzodiazepines, you better give that before you stop the LVAD.

Haider: Because otherwise they might not even get circulated. The other thing is know your device. And the reason I say this is because the more common types of pumps, so HeartMate pumps, as you can imagine these devices have been made to be very hard to stop, because you don't want that be done by accident. But the HeartMate device will have this very loud, countdown. It's like a blaring siren when you stop these devices. Can you imagine? Can you imagine doing this for a patient in a really, really tough spot in the hospital, family, loved ones around and you have this?

Eric: Can you turn that off?

Haider: No, no, I tried my very best. And so this one time, what we had to do is we found a perfusionist and we just took the batteries out. So we just opened the module and we didn't go through the usual... The other device, which is a hardware, which is now less commonly used is actually has this really, really humane option. And what it is like a small red plug. And you can essentially put it in the device and one of the adapters and it completely silences the device.

Haider: And so then you can turn it off without this garish, really violent siren going off, which can be completely disconcerting. So I guess a few things, just to summarize my sort of general thoughts about this topic. I think every patient no matter what their health status should have a right to turn off an LVAD. And if not, then we need to make it clear before we put in the device. That shouldn't be something that's dropped on someone after the fact.

Haider: The second thing is that if someone is considering the activating an outlet the right place to do it is in the hospital, where you have the intensive therapies available, and the monitoring available to make it happen in a peaceful, dignified way. The third is if you're going to give meds to keep them comfortable, do it before. And then know your device. And then I would say that this needs experience, this can be a difficult thing to do. So the more the heart failure team and the palliative care team work together, the better these really, really difficult situations can be.

Eric: Do you have set protocols at your institution for this?

Haider: We have some nursing protocols, but it's mostly... I actually at my current institution, I do not know if you have protocols. But I'll go and check on it, make sure we do have them.

Eric: Yeah. Well, Anne I'm going to give you the last question. I think we have room for one more, if you have any.

Anne: Well, no I don't I was just doing some thinking in my head about things I've seen this last year and thinking about... I think most places obviously it's mandated now that Palliative care is involved with initial LVAD consults. But I just think about these folks that are destination therapy and thinking about it should be mandatory that there's palliative care following them throughout this and throughout this transition and thinking about talking about end of life and what it looks like, even up front at that moment too. And I'm really glad you brought that up as something you share with your patients.

Haider: And I'll add one thing this is shout out to the University of Utah, which has a great palliative care program. But they actually did like a quasi-natural experiment to answer that exact same question. Not just that palliative see patients with LVADs at that time of implant but really follow them. Because they had patients who were both at their VA and at their university. And at one center they had longitudinal follow up and at the other they didn't.

Haider: And one of their nurses, one of their bad coordinators, she said something that I'll always remember. She said that the patients didn't have different outcomes. But when a patient had a bad outcome and they hadn't seen palliative care, their caregivers, the patient's caregiver, their reaction to that outcome was very, very different. And so I do think that it shouldn't just be a one time thing, checking the box. It really should be a longitudinal relationship that develops with palliative care for these patients long term.

Anne: Couldn't agree more.

Eric: Well, a big thank you but before we end, Alex, you want to try it again? First time was great by the way.

Alex: I love how you challenge me on these, Haider. (singing)

Eric: That was great.

Haider: Thank you Alex.

Eric: That was fabulous. Anytime you want to be on our podcast that'll be awesome. The other good song for this podcast would also have been, not as good as outlawed, but Destination Unknown by... Who sang that again? Alex? Missing Persons - was that the group?

Alex: No.

Eric: Anybody? We're going to have our listeners, Destination Unknown, great 80s song. Haider, thank you very much for joining us. Anne thank you being for being our editorial fellow this year for GeriPal.

Anne: My pleasure.

Haider: Thank you for having me.

Eric: And thank you to Archstone Foundation for your continued support.

Eric: And to all of our listeners, thank you for supporting GeriPal. Alex tweeted out this week that we are now number seven...

Alex: Number five.

Eric: Number what?

Alex: Number five. Yes, we are now number five on the medicine podcasts under Apple podcasts.

Eric: Awesome. Make us number one, folks. And with that, thank you, everybody.