Deprescribing at the End of Life: Jennifer Tija, Jon Furuno, Simon Mooijaart

Eric 00:13

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:17

This is Alex Smith.

Eric 00:19

And Alex, we’re going to be talking about deprescribing at the end of life. Who do we have with us to talk about this today?

Alex 00:26

We have two guests joining us from Europe. We have Jen Tija, who is a geriatrician and palliative care doc and researcher who’s at UMass Medical center but is currently on a Fulbright scholarship in the Netherlands at Leiden University Medical Center. Jen, welcome to the GeriPal podcast.

Jen 00:46

Thanks for having me here.

Alex 00:47

And we’re also delighted to welcome Simon Mooijaart, who’s an internist, geriatrician, and chair of geriatrics and gerontology at Leiden University in the Netherlands. Simon, welcome to GeriPal.

Simon 01:00

Thanks for having me.

Alex 01:02

And delighted to welcome JJ Furuno, who’s an epidemiologist who studies hospice and palliative care and is at Oregon State University. JJ, welcome to GeriPal.

JJ 01:12

Good to be here.

Eric 01:14

While I love Oregon, I gotta say, I visited Leiden a year ago and I thought it was one of the prettiest cities I’ve ever seen in my life.

Jen 01:21

100% can’t go wrong.

Eric 01:23

If our listeners never visited Leiden, go visit Leiden. It is amazing.

Simon 01:28

I’m completely biased, but I agree with you.

Alex 01:32

You’re going to have a flood of GeriPal podcast listeners coming your way.

Eric 01:38

Okay, but we’re not talking about Leiden. We’re going to talk about end of life deprescribing. But before we do, we always ask for a song request. Who has a song request for Alex?

JJ 01:47

I believe that’s coming from me.

Eric 01:48

JJ, what’d you pick?

JJ 01:50

I picked Broke Down Palace by the Grateful Dead.

Eric 01:53

Why did you pick this song?

JJ 01:56

It’s a beautiful song. I think the Dead just lost another original member in Bob Weir not that long ago, so it’s been on my mind. I think there’s different interpretations of the song, but it gets played a lot at memorial ceremonies. And I think it’s just a really beautiful, beautiful piece. So I think it’ll kick us off.

Eric 02:15

Well, Last question. Are you a Deadhead?

JJ 02:17

Yes, admittedly.

Eric 02:20

Have you been to a concert?

JJ 02:22

I never saw the original Dead. I did see the other ones and some other side projects.

Alex 02:28

My first concert was Grateful Dead, 8th grade in Ann Arbor. Amazing show. There you go. And yeah. Bob Weir, who just died, was a resident in Mill Valley, which is where I’m recording this podcast right now. And as was Jerry Garcia and Phil Lesh. They all lived in this area. So sad. Talking to people like Lynn Flint, who’s been on our podcast frequently, who saw Bobby Weir around town. So, yes, very appropriate song. Thank you for choosing this one, JJ. Here’s a little bit.

Alex 03:01

(singing)

Speaker 6 03:18

all the birds that were singing I flown except you alone.

Eric 04:16

I can always tell how much Alex likes a song, depending on how long the intro song goes. He likes that song.

JJ 04:25

Great.

Alex 04:26

So great.

Eric 04:27

All right, I’m going to start off with a big question because all of you have focused a lot of energy and interest and academic rigor on this topic of deprescribing at the end of life. Why? Like, what got you interested in this, Jen?

Jen 04:41

The story is, when I was a geriatrics fellow at Penn, I got to live around the corner from my partner’s very world famous violin teacher who was dying of cancer. And we got to take care of him and help him manage his meds and see how his family was dealing with all these meds that he was taking. And long story short is that the family was so stressed out about trying to figure out which meds he should take, how to get all of them into him at exactly the right time, say, TID or Q8 hours.

And they couldn’t tell. They just freaked out every time there was some sort of dose that got missed or. Or something. And I knew as a clinician which ones were important or not, but they were equally stressed out about anything that was not right. I was like, we gotta do something about this and make it simple. Cause there’s all these unintended consequences.

Eric 05:42

Yeah. Oh, yeah. And the geriatrician probably in you, loves medication debridement.

Jen 05:46

Like, well, yeah. And I was. It was just like one of those things. This is like, this was a long time ago. We won’t talk about how long ago it was, but this is before we started talking about less is more. And, you know, we gotta do less because this is, you know, not all these things are necessary. And it’s maybe not helping.

Eric 06:04

Yeah.

Jen 06:05

Yeah, that’s why I do it.

Eric 06:06

Simon, how about you?

Simon 06:08

Yeah, so I think my interest also comes from just my clinic. And every time that you want to stop a medication, I notice how much harder it is to stop than to actually continue, continue or even start something. And then you see patients dying with still taking all kinds of medication until the last day of life. That’s intriguing. And also a puzzle and also very hard just, just to deliver good care, I think. So that’s where my ideas come from of trying to solve something in that.

Alex 06:39

Yeah.

Eric 06:40

Do you have like a, a, a top three most like why are we doing this at the end of life drug?

Simon 06:47

Well, one, one that I am currently studying is about antithrombotic medication. But I previously also did a lot of work on thyroid medication in people with subclinical hypothyroidism. And we, we found across all kinds of trials that it’s not very helpful to take the medication. But now around the world, millions and millions of people are on thyroid medication without actually any benefit of it. How are we going to stop all of them taking it? So that’s also some one that is in my top 10.

Eric 07:19

God, I’m really interested in hearing about that. Jen, did you have a top three?

Jen 07:24

Statins are definitely up there. These antithrombotics are hard because so many people have atrial fibrillation at end of life. And I’ve done work on anti dementia modes but that’s so controversial. We might not want to go there, but it’s, it’s been studied a lot.

Eric 07:39

Wait, are you saying it’s controversial?

Jen 07:41

No, there’s no controversy. Not controversial.

Eric 07:44

Not controversial. Let’s go there. Anyways, I like. We’ll start off with the E. Do you like controversy? No, we’ll do both. JJ, what’s your origin story in all of this?

JJ 07:53

So I’m not a clinician, so I trained as an infectious disease epidemiologist at the University of Maryland. And one of the areas I was working in was antimicrobial stewardship and nursing homes. And I think thinking about what other care settings and populations where there’s probably a lot of antibiotic use but not a lot of evidence to support that. And hospice and palliative care did come to mind. I did some lit searches and I was correct in my assertion. So our first paper, we leveraged the nhhcs data so the National Hospice and Home care or home and hospice care data that are no longer collected but to look at antibiotic use and saw that about 20 some odd people.

Percent of people are still getting antibiotics. In the last week of LIFE published that in jpsm. So we’ve published a lot on that topic. It’s very hard. I think it’s. If you were. I’m. I’m not a clinician, but my top three antibiotics would still be in my top three as one where I think we still struggle with. And speaking with clinicians, we still struggle in nursing homes, and I think the evidence is still lacking to support those decision making.

Eric 09:02

Uh, anything else that would pop up in your top three in addition to the antibiotics, Easy or hard?

JJ 09:08

Uh, well, I mean, I think, you know, which I think triggered me being here is we are also working a lot in the antithrombotic space and with Jen and with our team here, and we have doing a lot of similar work to what Simon I know, has, has done in the serenity group. So I think those meds certainly are, are definitely on in my top three. And statins, you know, the other part of my origin story, I guess I should mention is that when I talked about this when I went to my first PCRC meeting, I’m not sure when that was.

People said, oh, you really need to go talk to Gen Chia. And I don’t think that they knew that Jen and I would become like, very, very close friends. And we, you know, I think we would, you know, everything else that came with that. But, you know, my favorite research collaborator and wonderful person and, and I think we’ve learned so much from each other. So. So statins, I think, are on the list. And that was the first paper that Jen and I did together. So. So that’s still up there as well.

Jen 09:59

Well, statins is the one with the, you know, we really have, you know, Gene Cutner and all those folks put out the statin deprescribing trial, the big one for hospice eligible patients, where we show that or they showed that you really can stop them and that, you know, possibly can improve quality of life, which I think all of us as geriatricians or clinicians are really concerned about. Right. So statins are a big one.

Eric 10:21

So just for. So statins, I’m going to start off with statins. So we do have one randomized control trial, right, Deprescribing Gene Kutner that showed really no difference. But I think the controversy of that one was was it powered well enough to show a difference between the two groups?

Jen 10:38

Well, I think the issue there was was that I think it was meant to be powered to show no difference. And that you know, all trials, and Simon will talk about this, are hard to do. And trials at the end of life and in hospice are super hard to do. So Gina Herbert did a heroic job and yeah, they got as many people as they could and that’s the controversy. They probably needed more to show a hundred percent, no difference, but they got pretty far.

Eric 11:07

Well, I’m going to jump to that question, Simon. Why is it hard to do this at the end of life?

Simon 11:11

Trial’s a trial, so clinical trials, doing clinical trials is hard anyway because all of the regulatory issues and if you’re looking at particular patient groups that are quite small, then you need to do it in a multi center way and maybe in, in Europe, even in a multi country way. So that is already very complex. And then one of the things that is very hard to do in the first place if you are doing a trial like that is establishing what is, what are we actually studying, what is, what should be the primary endpoint. So in oncology they just take something that is very easy to measure, something like mortality or so.

But that’s not what we are interested in. We are interested in quality of life. But how do you measure quality of life and how do you measure quality of life in people who die very soon? Is it then quality of dying? Well, that’s just one of the aspects that we in trials have always struggled with, making that very solid. And luckily it’s being more and more accepted that these are the endpoints that we are actually interested in. But it makes it harder because you need to measure quality of life in people who are dying. So somewhere, three days before they die, you’re going to call them and ask them, so by the way, what’s your quality? So that’s, that’s really hard, but it is the way to go, I think. And well, that’s, that’s interesting to, to see how that that field is evolving over time and how, how there’s coming more and more attention for this important part of life.

Eric 12:40

So maybe we could just start off with some of the easy meds to deprescribe or debridement of medications at the end of life. It seems like statins, it would be rare occasion where you’d want to continue a statin or recommend continuing a statin. Would we all agree with that?

Jen 12:57

Yep, I think so, yeah.

Eric 13:00

Jan, I gotta ask you, dementia meds, you mentioned dementia meds, are they controversial or not? Do you prescribe at the end of life?

Jen 13:10

I think they’re hard because everyone’s afraid that people and People, probably a lot of people have clinical experience or personal experience, seeing that if we stop the meds, people are always worried that things are going to get worse. Right.

Alex 13:23

But would they have gotten worse anyway?

Jen 13:25

Exactly right.

Eric 13:27

And they barely work to begin with.

Jen 13:29

Well, I wasn’t going to say it, but you said it. Because I work with a lot of believers and I’ve worked with a lot of believers who wanted to say, well, the geriatricians and the nursing home docs just don’t know how to prescribe the dementia meds. I’m like, no, no, no, no, no, they don’t work anyways. But you said it, so thank you, Eric.

Eric 13:46

Yeah. It’s hard to imagine a drug that barely works to start off with that all of a sudden, you know, people get much worse when you stop it, especially if you titrate it down.

Jen 13:57

Yeah.

Eric 13:58

So dementia meds, I think I agree. Like, we have no, no evidence that people with advanced dementia benefit at all. Like, zero evidence that they benefit. All the studies are like mild, moderate, severe dementia, but not end stage, not end of life dementia. Now, I can imagine if you have somebody with like moderate dementia who’s dying from pancreatic cancer, maybe in that situation. Right. But even there, like, you have to think about the risk benefit, especially around nausea, decreased appetite, synchrony. With all these meds.

Jen 14:32

They’re not eating anyways, right? They’re not eating anyways. They’re probably taking 10 meds. Like, let’s let them eat real food as opposed to, you know, the 10 meds. It might not. Or at least the dementia meds might not be helping them. Right.

Eric 14:43

Any other easy call, medications like ones that are not kind of controversial? I’m gonna throw dementia meds in there. Alex, you got any for you?

Alex 14:52

Well, we have talked about in this podcast, lag time to benefit. For some medications like osteoporosis meds, bisphosphonates, for example, the lag time to benefit for those is probably a year, which is pretty short. But if we define the end of life time period as being much shorter than that, Six months, weeks, months, you know, the average length of space.

Simon 15:15

But that also raises. Raises another interesting question, which makes it hard as a subject. That is, how do we determine end of life? How do we know that this is going to be the last year or the last six months or the last three months.

JJ 15:29

Right.

Alex 15:30

It’s easier as a researcher to do a retrospective study and start at death and look backwards. It’s a lot harder if you’re trying to do a Prospective trial. And you want to identify people who are within X timeframe of dying. So you need to look at people who have a short prognosis. And as somebody who studies prognosis, we know that it’s really hard to do that. So we do the best we can. Others that we’ve talked about on this podcast include medications for tight blood sugar control.

We don’t need to be doing that when the lag time to benefit for tight blood sugar control is on the order of, I dunno, 8 to 10 years to prevent microvascular complications. Right. Retinopathy, nephropathy. We’ve talked about tight control, blood pressure as well as not being as important and we can start relaxing some of those meds.

Simon 16:21

Yeah, yeah, that. I think that has come a little bit under debate after the Dontal trial. Right.

Eric 16:26

Tell me about that one. What’s that trial?

Simon 16:28

So, so, so we, we did a trial in nursing home patients with dementia. So that’s a very, very frail patient population who had neuropsychiatric symptoms. And then we did a, a trial to a randomized trial and in one arm tapered down the antihypertensive medication with the idea that that would increase their blood pressure, that that would increase their blood flow in their brain and would decrease their neuropsychiatric symptoms.

And the trial eventually was stopped prematurely because of more mortality in the intervention arm. So there was more mortality and more falls and more heart failure in patients in whom the antihypertensives were tapered down compared to those who remained on the same level.

Alex 17:19

We, we’re doing a podcast about this one. This was the study published in New England Journal, I believe is this nursing home residents with dementia. First author’s name is Athen.

Simon 17:30

Yeah, that’s the one by Anatas Benitos. And the one I’m talking about is the one that is. That’s been published in, in Agent Aging, the Danton trial.

Alex 17:41

Okay. All right, so different trials. All right. We’ll have to get links to these and put them in the show notes. This is great. Eric, I know you have a favorite related to bph.

Eric 17:50

Oh, yeah. Finasteride for bph. Benign prostatic hypertension. Like it takes six months to work. It’s gonna take at least six months not to work. Like it decreases.

Jen 18:01

Yeah, that’s a good one. Yeah.

Eric 18:03

Calcium, vitamin D. Like, man, the amount of times I just click, click, click, stop it.

Jen 18:08

Yeah, Vitamins.

Eric 18:09

Yeah.

Simon 18:10

Should we be giving vitamin D anyway? In anybody who doesn’t have osteoporosis?

Eric 18:15

It’s a Good. It’s a good one. Just to stop anything else that’s coming to your mind. As far as easy ones, we should do that. Easy ones. Easy ones that are non controversial.

JJ 18:25

I would argue that there’s not very little evidence to support the. I mean, I’m playing to my strengths here, but antibiotic use, I mean, I think that there’s few good indications for why this would continue after hospice admission.

Alex 18:38

In my opinion, symptomatic uti.

JJ 18:41

I just wonder if you can palliate. What, what are the symptoms that. I guess you’re. You’re referring to suprapubic pain. Yeah. I mean, can we, can we, can we palliate? Can we do something?

Eric 18:51

I think, I think most commonly, JJ, it’s somebody with confusion. They get a culture, it’s positive because it’s going to be positive anyways.

JJ 18:59

Okay. Yeah, they’re all going to be back. Most patients will be bacteria, I mean, and you know, are they actually symptomatic? You know, so are we treating asymptomatic bacteria and things like that?

Alex 19:10

How about suspicion of pneumonia?

JJ 19:14

Right?

Alex 19:17

Yeah. Right.

JJ 19:19

Let’s talk about.

Eric 19:19

Let’s talk about antibiotics. I think there’s ones that are easy, right?

JJ 19:23

Like this happens.

Eric 19:24

There’s ones that are easy for me, statins, vitamins, finasteride, like, I’m just stopping things left and right there. There’s ones that are a middle ground for me, like antibiotics. Like, I remember. I think it’s jama. I am. They did a, you know, retrospective study looking at antibiotics in people with advanced dementia, looking at comfort, mortality. And what I remember from that study is antibiotics in people with advanced dementia do appear to prolong life retrospective. So all these confounders, but don’t improve comfort, quality of life.

And there was no difference between sending somebody to the hospital versus doing antibiotics in the nursing home, and no difference between IV and PO as far as the mortality benefit. Knowing that, again, there’s tons of confounders. Like the people who are being started on antibiotics are different. Those who are not. Thoughts on that, JJ, like, how do you. What is the evidence that you’ve seen around antibiotics, let’s say in particular, like, do we have. Around dementia? And do you, do you trust that data that that’s out there?

JJ 20:28

Well, I’m biased in that paper because I know the authors very well.

Eric 20:33

I was gonna. I thought you were gonna say. Cause I was one of the authors.

Simon 20:36

I’m.

Eric 20:36

Oh, my God.

JJ 20:37

Well, one degree of separation. So I, I think those data are. Are good. And I think that was a. A very nice study. I don’t. But I just feel like in. Not good indications and. And especially, you know, in hospice admission for the. The. The biggest indication is that it’s a barrier to people entering hospice. It’s like they won’t go unless you can. Unless they can, you know, finish their course or that they know that they’ll be able to. If they develop a uti, that we’ll treat it. You know what I mean? But, you know, do they really want to hear about, you know, what C. Diff infections look like and people that are, you know, and.

And most people have just this presumption that antibiotics are benign and they can only help. I mean, I think we don’t talk as much about the side effects. I think the side effects for anti thrombotics, I think, are better understood, you know, the bleeding risks and things. And I just don’t think that there’s good data and I. To continue. And I wonder if there ever will be. I mean, I just worry about how we’ve tried to get those types of projects funded. I think they’re really hard. You know, I’d be very happy to.

Eric 21:46

What would that study look like, JJ, If I had a, you know, unlimited sum of money and you’re. You’re gonna try to. I get. I’m willing to fund any study you want. J.J. around antibiotics at the end of life.

JJ 22:00

God, I’d have to think about it. I mean, I think a lot of these things, as we indicated when we talked about, we, you know, for a lot of these studies, we leverage like, you know, electronic health record data or, you know, we try to. But we know that this isn’t just very well documented and the symptoms. We don’t know if people actually, you know, diagnosing a true infection. And this patient population, I think, would be very. Would be tricky. It’s not just. So I, you know, I think a prospective cohort study is probably the way you would. You would go with this and then our trial, I think, you know, I

Jen 22:31

think they have had a prospective cohort study that followed that. That paper that. That Eric was talking about. I think. Oh, Susan Mitchell did it in advanced dementia. I. I don’t remember. I think it was called spread was.

Alex 22:43

I think so the acronym.

Jen 22:45

I don’t remember the results. But I’m curious if. Simon, can we do a randomized controlled trial of antibiotics at the end of life, or is that just way too hard?

Simon 22:56

Sure. Everything is possible. It depends on how close to end of life you want to go. So, yeah, so I was thinking also about this. If you consider end of life really the last days of life. So in one paper I read that if you are admitted to hospice, that then the average time before you die is only nine days. So that’s really the last week of life. And I think there you would do a completely different trial than you would, say, three months before end of life or something. Or if you enter. If you enter the palliative phase.

JJ 23:31

Yeah.

Alex 23:32

So on hospice, enrollment is one marker that you could use in a study. Prognosis is another. I forget several cases in clinical work where patients who have, like, widespread infections, like infected hardware or something like this, and they’re on IV antibiotics, and it’s just things are going miserably, and they decide to focus on comfort. And we transition them into our hospice unit, and then we go to the ID consultants and we say, hey, we need to take them off of IV antibiotics and put them on something oral for the remainder of their lives.

And their heads explode. And they say, there’s no data around any of this. What are you doing? In those sort of cases, it does seem like it’s prolonging life and quality of life by suppressing that, you know, level of infection. Um, so those. That is kind of like, one of the exceptions. And at some point, it won’t make sense to continue them.

Eric 24:22

But I. JJ, I gotta ask you. This is. I think there’s probably, again, like, pneumonia. Treating pneumonias with, like, oral antibiotics in a nursing home may prolong people’s life for pneumonia. Again, UTIs, I think that that one study you mentioned showed no benefit, because most of the time for UTIs, it’s actually, quote, unquote, not a. It’s just, you know, asymptomatic bacteria that we’re seeing. But I can make a case that there’s a mortality benefit. It may prolong life. I don’t know of any data that improves quality of life or improves comfort. Like, all the data I see is it probably doesn’t. Like, we have a lot of other ways to do that. Would you agree with that?

JJ 25:02

I would agree with that. And I’ve also heard kind of cases where people will treat their pneumonia, they’ll actually get better, and they’ll actually get, you know, booted from hospice because now, you know, and then. And it becomes this horrible cycle. So I. I think it can be really tricky as well. Um, I. I’m. I’m worried that it’s not helping people is like, kind of like the short answer. And, you know, there May be some short term benefits.

The suppression I get, and I know that that is the clinical justification is that it’s sometimes that it’s suppressing this infection which could be causing discomfort. Um, I agree that that’s probably happening. I mean, again, as a non clinician, but generally speaking. And you know, I think there’s going to be individual cases, but I don’t think the evidence is there to justify the magnitude of use. And as Simon said, especially as when you’re getting into like the last week of life where we’ve seen it. So.

Eric 25:53

And my experience certainly in that period does not improve comfort. Like, there’s so many other ways we can help with comfort. Jen, would you agree with that?

Jen 26:02

Oh, there’s tons of ways we can help with comfort. Yeah. But, you know, one question as we’re having this conversation, I wonder about like, who are we treating? Like, we, we obviously think we’re treating the patient, but there’s a lot of issues of family concern. Families feel like we should be doing something or sometimes family have guilt. Like when you’re stopping all these meds. What do your patients and families say? Eric or anybody else, you know.

Simon 26:28

Yeah, that’s very, that’s very recognizable in the clinic. That you have a patient and a family that all of a sudden you, they becoming aware. Okay, so, so now you’re entering the phase of dying and, and usually that is a huge shock. And, and it’s. I think it’s very defendable to take a step down approach there where you say okay for. Well, the first step is that either way, whatever happens, we are not going to send you to the ICU anymore and we are going to, to try to get you to hospice, but we will continue antibiotics to, to keep it stable. And then after a couple of days or after the transition somewhere else, then you can say, well, let’s now also stop. Doing all of that together is usually, in my experience, it’s just too much for patients and their families.

Eric 27:12

Yeah. I do think that there are, there are ones that are easy where there’s usually no. And I can just lump them when I’m talking to families. I think we’re going to stop all the medicines that we don’t think are going to help anymore, including X, Y and Z. And there’s no pushback, there’s no, I’m not consenting. It’s just an ascent. There’s ones that I think I struggle with that are harder.

I think antibiotics like we talked about. Simon, I’d love your thoughts on thyroid meds. Meds that they’ve been taking for years and years and years, diabetes meds, thyroid meds. Those I think people struggle with, especially if there’s potentially a symptomatic benefit like thyroid meds. There’s ones that I think I struggle with, but family members struggle less with, like, anticoagulants, because it’s going through my head. But I don’t think it’s quite like they’re not as well attached to it. Simon, what do you think?

Simon 28:04

Well, so. So I think for thyroid medication, so a lot of people are taking them for subclinical hypothyroidism that, that was established 20 years ago, and they’ve been on it ever since. And then on the. On a low dose, so probably everything up to 75 or 100 micrograms, you can just stop it. So I wouldn’t be very hesitant about it. In my opinion, everything that is cardiovascular is very, very hard for patients and their families to stop. Because their cardiologists, I’m going to say this a little bit blunt, but their cardiologists have been saying for 20 years that if you don’t take it, you die.

So that’s where I always notice that if you start talking about stopping anticoagulation medicine, that people then say, no, no, no. But my cardiologist says, okay. And then if you get to the end of life, and that is where it becomes tricky, is that there’s a net time to benefit for all of these medications as well, but they all give the risk of bleeding. So somewhere between entering the palliative phase and dying, there should be a moment to reconsider and stop. And that is a very complex thing to do.

Eric 29:16

Well, I struggle with this concept.

Jen 29:18

This is.

Eric 29:19

I struggle with anti. I think this is my biggest struggle is antithrombotics. Like anticoagulants, doax for afib for pe. Like, time to benefit makes sense when we’re talking about, like, most preventative medications, including, like anti hypertensives. But like, if I calculate their chads Vasque, and there’s like a 15% chance of having a major event in the course of a year, there’s still a chance in the next three days that they may have that major event. I’m not as worried about them dying, but having a major disabling stroke in

Simon 29:52

somebody who’s awakened, they also may get a major bleeding.

Eric 29:56

Oh, bleeding.

Simon 30:00

So there’s a side effect to these medication. And especially in certain populations at the end of life, such as cancer, in the end of life, they have an increased risk of bleeding even so. So then where is the balance between this, this, you. Obviously in a year time you can get a stroke if you have afib, but you can also get a major bleed. And we know that at the end of life bleeding is something that is really detrimental for your quality of life and quality of dying. Bleeding is never a good thing.

JJ 30:29

Yeah, I’ll just, you know. Cause I, I read some Simon’s papers from the Serenity Group and we’re looking at this as well. So, and, and, and the it aligns is that I think there’s also discordance between what patients are worried about and what, you know, are worried about. And so clinicians are worried about bleeding, patients are worried about having a stroke, and caregivers are having a stroke and having a stroke and living and being debilitated and dependent I think is also a big concern.

So I think in discussing the benefit, risks and benefits, I think because there’s that discordance, it makes it even that much kind of harder where people are starting on opposite extremes. And we have pretty bad prognostic tools for stroke and bleeding in this population. We’re presenting this at the annual assembly. But not surprisingly, I mean, you had mentioned 50%, you know, chads Vasquez. I mean, we’re seeing that like, you know, close to a hundred percent of people have a Chads Vasquez. That puts them in the high risk category. They were developed in community dwelling for

Eric 31:29

People who are approaching the end of life. Right.

JJ 31:30

And people in hospice, they’re, they’re, they’re.

Eric 31:33

Everybody has a Chad’s mask.

Simon 31:35

Everyone.

JJ 31:37

And everyone’s at high. And, and, and they’re, most of them are at high risk of bleeding as well. I mean, we don’t have, we’re not as good at that because some of the tools, some of the variables are harder to get at.

Eric 31:46

So how often are people actually being prescribed these meds at the end of life, like in hospice?

Simon 31:51

I’m, I’m not sure about hospice, but, but, but in this serenity consortium where we, where we did all kinds of work to prepare a clinical trial and a shared decision support tool, there was one particular study who looked at this and there we found that in the last month of life, uh, so retrospectively still 80% of patients were using anticoagulations. And the average time before death of stopping it was 14 days. So this is something that is in the last phase of life, really, really common.

JJ 32:23

Yeah.

Alex 32:24

And serenity was, Were those European sites?

Simon 32:27

Uh, yes.

Alex 32:29

And Jen, I Think you have some data from us, a JAGS publication.

Jen 32:33

Yeah, that’s the paper that JJ helped lead.

Alex 32:37

And I don’t know JJ’s senior author on that one.

Jen 32:40

Yeah. JJ, what did that paper show?

JJ 32:43

So that’s Emily Short’s paper, who’s also presenting on our chads VASC and has pled stuff at the annual assembly. And so it was 21% in a large hospice population, so over 50,000 hospice patients. Admittingly, most of that was, you know, are we, you know, antiplatelets and really aspirin is a big player there, the biggest player there. But still a lot of people are on morphine and doex.

Eric 33:08

And were the aspirin people for primary prevention, like something that most people shouldn’t be on, or is it.

JJ 33:14

That’s harder to tell retrospectively. Right. I mean, I think indication wise, we know what some of their underlying diagnoses were, but it’s tricky to know exactly what they were being. I mean, I think anecdotally. And we’re also engaged in some qualitative work now. I think we’re hearing that. But you know that, that sometimes people are on it also. People are, it’s. It’s a de. Escalation from something that they were on before so that they want to give them something.

I see Simon nodding. I think they probably see something similar in the, in Europe that, you know, they’re on a warfarin or a doac and then they want to take them off of that and so they’ll put them on, but they’ll give them still an aspirin for some prevention and also to palliate anxiety as well. That’s the primary, maybe the primary indication there.

Eric 34:02

Okay, I, again, I, I’m still stuck because I still struggle with this issue. Warfarin was kind of easier because, like, most people didn’t want all the blood draws and monitoring especially got doacs. Like it’s just a pill. Simon, you’re working on a study, right? That’s, that’s looking at helping clinicians, patients, families think through this.

Simon 34:22

Yeah. So because this is actually very complicated and there is also. There’s no really a true answer or we don’t have the prognostic information. So. So there’s not a good or bad answer. I heard your podcast of last month about uncertainty, and this is all about uncertainty. Right. We just, we just just don’t know. But what we do know is that it is something that should be on the table to discuss. So we’re working on a trial in which we are testing a shared decision support tool in which we make patients aware that there’s even a choice.

And also to show to them that there’s not only a benefit of the medication, but there’s also a bleeding risk associated with medication. We just already somebody said that usually patients and their families are attached to the benefit and the doctors are worried about the side effects. And the shared decision support tool is to basically support the patient with information about this choice and also about what their role is in this choice process. And it’s about educating them on shared decision making as well. And part of the intervention is also that we teach the medical doctors, the oncologists, in this case, about the exact same thing.

So we show them these kinds of numbers of patients taking these medications until the last weeks or days of life, even so hoping to spark them to have this discussion about reconsidering this medication much sooner than they would have by just waiting for it. There was a lot of research done in this consortium also. For instance, one thing that was very hard to establish was, okay, so now, and which doctor is actually the owner of this problem? Because usually the cardiologist will say, no, no, no, some kind of palliative care doctor would need to do it and the GP would say, no, no, the medical specialist in the hospital would do it.

So this is also about who is going to take ownership of this problem. And that’s why we specifically targeted one group, cancer patients and oncologists, to teach them and their patients and their caregivers about this reconsidering.

Eric 36:39

So let me ask you this, Simon, in the how are you addressing the information? Like, what do we know about the benefits and risks in this population? The benefits, let’s say for afib, the benefits of preventing a stroke in the hospice population versus the risks of bleeding in this hospice patient hospice population with cancer. Like, if it’s shared decision making, like, how are you addressing like those two things?

Simon 37:03

Yeah. So without going into individual prognostication, because there’s not any reliable models. And also it introduces all kinds of privacy issues in the trial, but we just give them the information from epidemiological studies. At your age with cancer, what is the risk of you getting a bleed in the next year? And then you see that one in three or something that it’s really large numbers that has the risk of getting a bleed and what is the risk of you actually getting a stroke or a pulmonary embolism? And then you see that that risk is lower and then still you can weigh is getting a Stroke, Is it worse, like you said, because it makes you also dependent or.

But then at least you can have that conversation. And we hope that that will inform the patients. Maybe not even at the single moment that we introduce this shared decision support tool, but somewhere down the line, if they start deteriorating and really going into hospice, that by that time everybody will understand, well, this is the time to stop and focus on comfort only.

Eric 38:06

You think most people on hospice should be off medications like doacs? Given what you just said there, yes,

Jen 38:14

Jen, I would have to agree.

Eric 38:16

Yeah, JJ, from an epidemiologist perspective, I.

JJ 38:21

I think that the data suggests that that’s the way. The way to go. So that’s.

Eric 38:25

Yeah.

Alex 38:26

Uh, can I ask Simon by way of follow up? Well, a couple things. One, I heard you say earlier, uh, you did this study of last month of life, last 30 days of life, and the prevalence of anticoagulants over. Or antithrombotics overall was. Did you say 80%?

Simon 38:44

Yeah. So of those people who use antithrombotic medication, which was, by the way, a general practice population, of those people who used it and died, 80% were still using it one month before they died.

Jen 38:59

That’s a huge.

Alex 39:00

That’s such a high proportion.

Simon 39:02

Yeah.

Alex 39:02

And in hospice it’s 20%. So it’s not quite comparable because there are like half of people use hospice before they die in the US but it does seem. I. I’m starting to get the sense that maybe this is a bigger issue in Europe than it is in the United States, which is somewhat surprising. Maybe I’m wrong about that, but there did.

Simon 39:20

So it’s always very, very interesting to compare. To compare systems.

Alex 39:24

Yeah.

Simon 39:25

I think we have hospice here as well in the Netherlands and across Europe, but only a very small minority of people go there. Most of the people just die at home under the care of their general practitioner. And going to a hospice is a clear moment to have this kind of conversation. So I can imagine that there’s already a filter in the beginning of this hospice, where already a lot has been deprescribed. Whereas if you’re at home, that is not a defined moment, per se.

Alex 39:54

Right, right. And then the other point I wanted to question is, when you talk about bleeding risk, is it kind of nuisance bleeding, or is that major bleeding events?

Simon 40:04

Any. Any bleeding?

Alex 40:05

Any. So it could be like a nosebleed, for example.

Simon 40:07

Could be a nosebleed. And. And there’s. There’s people in our consortium. Simon Noble is. Who done studies before. He’s a palliative care physician, and he’s done studies before that any bleeding is associated with loss of quality of life in palliative care.

Eric 40:22

Yeah.

Alex 40:22

So it may be like a nuisance,

Eric 40:24

but is there anything that’s truly a nuisance bleed?

Alex 40:28

Yeah.

Eric 40:29

Okay, I gotta ask. I gotta ask a question. We’re running outta time, but we’re getting to the place. Like, we have these drugs. Are there frameworks to talk about deprescribing with patients and family members? Knowing this is complex. Like, people get attached to it. And this is maybe not even something the system is thinking about as far as deprescribing in certain situations.

Simon 40:52

Jen.

Jen 40:53

Yeah, so there are. I’ll. I’ll put two out there. I’ll put one out there that is called frame. And some really, you know, the big hitters in this group in this field, Lynn McPherson, Jen Perkowski, and Cara Tenenbaum. Frame is all about fortifying trust with people when they’re talking about this because they want to know that. So when somebody enters hospice in the US There’s a bunch of new docs that come up, come by, and the new docs have to try and figure out how to talk about stopping the cardiovascular drugs that the Cardiologist said for 20 years you need to take. So trust is a huge issue. There’s R, which is reviewing the willingness or barriers to deprescribing.

Then there’s Trine A, which is aligning recommendations. M is managing the cognitive dissonance. Wait, I had to take this forever, and now you’re telling me now am I dying? And E is empowering continuation of the conversation. So one framework out there is called frame. There’s a second one out there that my group put together with Ariadne Labs and Ariadne Eugene put together serious illness. And we have called this the goal concordant prescribing approach, because we really think it has to do with the goals of what the patient and the family want. And so we think that it’s very similar to Frame, really review where the patient’s at with all their meds.

They’re ready to stop. They’re not ready to stop. Are they wedded to certain meds? Review their goals. What are their goals for their life, but also for the meds. And review the meds in terms of what the meds can do. And then, like frame, align the med prescribing with what the goals are. And then S is, you know, we really want them to simplify. Review, align and simplify the meds. But again, it’s Review, align and simplify and rinse and repeat. Because things change. And always say, like, like Simon was saying before, you can’t do it all at once.

Yeah, you can do a little bit and then you see how it goes. Let people know that there is a choice and then revisit it as things progress. So goal concordant prescribing. It’s in general palliative medicine or frame. Let them both up. There are these more general frameworks that are bigger than just the one that the single drug prescribing aids.

Eric 43:16

I love both of those because it also aligns with kind of how we do family meetings.

Simon 43:21

Right.

Eric 43:21

We talk about what’s going on, we talk about what’s important, their goals, and then we make a recommendation that’s aligned with their goals. And specifically, like we actually say the aligning statement sounds like X, Y and Z are most important. Based on that, I think we should do this. Is that kind of how we do goal concurrent prescribing?

JJ 43:42

This is.

Jen 43:42

This is the intention. Yeah. This is the idea to ground. I’ll tell you why we came up with this. To ground the recommendations and where the patient and the family around to really let them lead. Because what often happens or what the fear is or the stereotype of hospice is. Hi, you’re on hospice. We need to stop all your meds now. It’s a very negative approach. And what we really emphasize in Golden Cordon prescribing is this positive approach.

Eric 44:08

Yeah, you’re not saying deep prescribing.

Jen 44:10

No, no, no. I hate that word. That’s a whole other. Let’s have a whole other podcast on the word deprescribing and why we need to get rid of it.

Alex 44:18

But anyways, do you like Eric’s word debridement?

Jen 44:21

Probably not. Good. I’ve heard that one before.

Alex 44:24

Enough family.

Jen 44:26

The thing about GCP is that it’s all positive. What are your goals? We’re aligning with your goals. Less is more. You know, we really try and keep the message positive.

Eric 44:34

Yeah, I love that because the amount of times like we’re caring for people with heart failure and the family members think hospice means we’re going to stop all their heart failure meds. And we’re all. No, we may stop exactly that. We don’t think are aligned with your goals or going to help you. But, man, those diuretics are probably important in some patients.

Jen 44:51

100%.

Eric 44:52

Well, I want to thank all of you for joining us on this podcast. This was wonderful. We’re going to have links to all of these studies we talked about the frame and the goalkeeper prescribing papers as well. But before we end, Alex, maybe we can Fare you well to all of our all of our meds that we don’t like anymore. To the statins at the end of life…

Alex 45:13

…we’ll put them to bed.

Alex 45:18

(singing)

Eric 46:32

Simon, Jen, JJ, thanks for joining us on the podcast. This is wonderful.

Simon 46:38

Thank you very much.

Eric 46:40

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

This episode is not CME eligible.

For more info on the CME credit, go to https://geripal.org/cme/