Potentially Unsafe Low-evidence Treatments: Adam Marks, Laura Taylor, & Jill Schneiderhan

Eric 00:11

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:13

And Alex, today we’re going to be talking about potentially unsafe low evidence therapies and how we address that with our patients. But before we do, who’s with us today?

Alex 00:25

We are delighted to to have three guests from my undergraduate alma mater, the University of Michigan. First up, we have Adam Marks, who is a med, peds and palliative care physician and associate professor at the University of Michigan. Adam, welcome to the GeriPal Podcast.

Adam 00:41

Thanks for having me.

Alex 00:43

And we are delighted to welcome Laura Taylor, who is also med, peds and a palliative care doc and assistant professor at the University of Michigan. Laura, welcome to the GeriPal Podcast.

Laura 00:53

Thank you.

Alex 00:54

And we’re delighted to welcome Jill Schneiderhan, who is a family medicine and integrative medicine doc and associate professor at the University of Michigan. Jill, welcome to GeriPal.

Jill 01:04

Great to be here.

Eric 01:06

So we’re going to be talking about a paper that was published. Oh, Adam, what journal was it published in again?

Adam 01:12

American Journal of Palliative Medicine.

Eric 01:14

And we’ll have a link to it on potentially unsafe low evidence therapies and approach to dealing with that. But before we jump into that topic, Adam, I think you a song request for Alex.

Adam 01:26

Yeah, I’d love to hear Bad Medicine by Bon Jovi.

Eric 01:31

Very apropos. Why did you choose this song?

Adam 01:34

Well, I think this topic has to do with sometimes the decisions our patients make that can be confusing and maybe even upsetting for us as clinicians. And so this seemed a very appropriate song.

Eric 01:45

Great. Alex, get it away.

Alex 01:53

(singing)

Eric 02:44

Wonderful, Alex. Amazing. Alex loved that song. I can tell.

Alex 02:48

I did. I did love that song.

Eric 02:53

All right.

Alex 02:53

Yeah, That’s a lot of fun.

Eric 02:55

So we’re going to be talking about potentially unsafe low evidence therapies. And you created an acronym for this. Is it French? Poulet? Alex, how would you say that in. In French?

Adam 03:10

Poulet.

Eric 03:15

Is it poulet or what is it?

Adam 03:22

We do the hard tea here in the Midwest. And so for us, it’s PULET.

Eric 03:27

PULET. Like a mullet.

Adam 03:29

You got it.

Eric 03:30

And what is a PULET?

Adam 03:33

Well, just as it says, it’s a therapy that has little to no evidence and we believe poses a significant risk of harm to the patient that’s pursuing it. And so this term was developed by our group to capture either non traditional therapies or really conventional medical therapies that patients may be pursuing with little hope of reaching a goal of care and significant risk.

Eric 04:02

Jill, you practice alternative and integrated medicine. Did I say that correctly?

Jill 04:13

So actually we prefer just integrative medicine now because we’re trying to really combine things into one medical system. So we’ve kind of complementary alternative go by the wayside.

Eric 04:23

So I guess from your perspective, how often does this come up when we’re thinking about these bullets, potentially unsafe, low evidence therapies in the work that you do?

Jill 04:36

Yeah, I think it’s actually really interesting because when Adam first brought this to me, I was like, oh, there’s so much of what we do that actually has more evidence than we think it does. And I think sometimes the bias is none of these things have evidence. But the truth is, and especially more recently, I’d say in the integrative space, people are coming in asking us about things that are much more on the unsafe, no evidence side, much more often. I’m having these conversations every single day.

Eric 05:00

Can you give me an example, like, so what are some of the frequent ones that are coming up recently?

Jill 05:07

Actually, ivermectin and cancer therapy is coming up regularly. I would say off label use of drugs is much more commonly coming up in my space. Ivermectin was also coming up a lot during the COVID conversation. Patients asking for me to prescribe it in advance. But there’s a lot of other things, too. Patients want to pursue. Expensive. I’d say chelation therapy is probably another one that comes up a lot in my space.

Eric 05:31

Stem cell, I hear that one a lot less.

Jill 05:34

I don’t know, maybe that comes up more on the palliative side, but in the integrative space, a lot less.

Adam 05:38

Yeah, we’ve heard it.

Eric 05:39

Yeah. Laura, you were going to say something too.

Laura 05:41

Oh, yeah, I was just going to mention that I think these potentially unsafe, low evidence therapies can really cross a broad spectrum of potential interventions, including really extreme interventions like travel Mexico for high dose, you know, intrathecal stem cell injections. This was actually a case that I encountered recently where a patient with a spinal cord injury traveled to Mexico for stem cell therapy, injected into the spinal fluid, and he developed a really rare mycobacterial infection, which was incredibly difficult to treat, ended up causing even more harm, even more functional debility than he already had secondary to a spinal cord injury.

So a PULET could include something like that that’s very expensive, requires travel, things that Jill is mentioning also, I think we conceived of PULETs as potentially encompassing therapies that might be floated or recommended by some of our colleagues, but that have potential harms or potential risk with low likelihood of benefits. So included in there would be things like chemotherapy in the last two weeks of life. Right. Could be considered a PULET, potentially unsafe, potentially inducing harm with low evidence of benefit. So we. We wanted the definition to be pretty broad of what a pull.

Eric 06:58

It could be CPR in an individual with metastatic cancer in the icu.

Laura 07:03

That could be a PULET.

Adam 07:05

Absolutely. I think we were very conscious of not wanting this to be sort of, you know, traditional medical interventions versus others. Right. Because I think, as General said before, like, sometimes our bias makes us think, like, well, it’s all. There’s no evidence for any of it. But in fact, we’ve seen a lot of patients engage in therapies that we think are a bad idea with a high risk and low. Low benefit.

Eric 07:27

Yeah.

Alex 07:28

And so then maybe it’d be helpful to talk about what is not a poulet. PULET. Yeah.

Eric 07:36

Alex wants to do the French.[laughter]

Alex 07:37

I’m trying to decide what is.

Laura 07:41

We can change it to poulet. It sounds cooler.

Alex 07:44

It’s always better with a French accent.

Alex 07:51

I had a mullet when I was in. Lived in Michigan in high school. So I kind of like that it rhymes with mullet. It’s from Michigan.

Eric 08:00

Alex, you had a mullet.

Alex 08:01

I had a mullet.

Eric 08:03

Can we share that back online on GeriPal listeners?

Alex 08:07

There’s no documented photographic evidence that I.

Eric 08:12

I think there probably is. Alex’s mom, if you’re listening, send me that mullet pict there.

Alex 08:18

Oh, no.

Eric 08:21

What’s not.

Alex 08:22

I was gonna ask. Yeah, what’s not? What’s not? A poet, like, can we say some things that aren’t.

Jill 08:27

I would name, like acupuncture for a host of different conditions, but I still have people tell me there’s no evidence for it. I would say there’s a fair number of herbs and supplements that probably fall in that category that people say, oh, there’s no evidence. Actually there is some and some of them are very safe. And so I think there are some things that cross that boundary that way.

Eric 08:46

I think the most common complementary trove of medicine out there for cancer patients, which I think 60 to 70% cancer patients take some type of thing, is like a multivitamin and vitamins in general. Would that fall into a PULET or not?

Jill 09:03

I don’t think so.

Laura 09:04

I don’t think so either. I’m thinking of some of like the high dose water soluble vitamins that people get in intravenous infusions. I think they may not be likely to provide much benefit, but because they’re water soluble and you just pee it out, they’re probably not causing much harm, except for potentially financial harm if they’re very costly. But I’m not sure that those would be considered PULETs just because the likelihood of frank harm is pretty low.

Eric 09:30

Okay. Another question. Steve Jobs, he decided not to get chemotherapy or medical, Western medical therapy for his pancreatic cancer, which was very treatable pancreatic cancer. Instead he did herbals, I think, like a vegan macrobiotic diet. So by itself, those had very little risk associated with them. The only risk was delayed treatment for his cancer. Would that fall into a pull?

Adam 10:05

You know, for me, I would say he’s more foregoing a treatment than engaging in something that I think is unsafe. You know, when we talk about the ways that we approach patients who are engaged engaging in this, I think a lot of the principles will be the same. I don’t want to jump the gun, but I don’t. I wouldn’t call his decision a potentially unsafe low evidence therapy because like as you said, the things he was deciding to do were themselves low risk. It’s just that he was foregoing things that we think would have provided him more benefit. I don’t know if my co, my co authors would agree with that.

Laura 10:36

Yeah, I was just. Oh, go ahead, Jill.

Jill 10:39

Oh, I was just going to say we treat people a lot where we combine like we do adjuvant, you know, supportive care with all of the things on the list of things he tried. And doing those in addition to cancer treatment would have been totally reasonable. He just left actual cancer treatment off. And so I think it’s again, just like Adam said, more about what he didn’t do than what he did do.

Eric 11:00

Great.

Laura 11:01

And I think I would categorize his behavior as perhaps engaging in some science denialism. Right. So rejecting sort of conventional medical therapies with a strong large body of evidence for benefit in engaging in low evidence therapies, perhaps promoted by folks who are not experts in the field with very low evidence of benefit. So that’s sort of a different type of behavior. But the, the treatment itself that he engaged in, probably, like everyone is saying, wouldn’t be considered a pull it per se.

Eric 11:35

And let me ask you this. I’m going to go back to the, the nidus of this. Why did you even decide to write this article? Adam, I’m going to start with you.

Adam 11:43

Yeah, thanks. My approach to writing papers is really the patient cases that stick with me. And this is one of those examples. Years and years ago, the first few years as an attending physician, I was consulted to take care of a gentleman with metastatic esophageal cancer. And he was admitted with hemoptysis. And as I was getting ready to see him, I saw that a month before, his oncologist had said, we don’t have any more disease specific treatment than I recommend hospice. And the note reflects a very angry response. I can’t believe we’d give up on being. I’m going to beat this thing.

And that was the last time that he’d been seen by our healthcare system. As I was talking to the team that had admitted him, they shared with me that he was engaging in what I’ll call an alternative therapy. That was argon light therapy. This was someone that would come to his house and they would draw a sample of blood and they would take it to their argon treatment facility and they would run it through their machine and they would bring it back and you wouldn’t believe it, but the blood had turned clear. And they would inject it back into him to treat his cancer for the low cost of $400 a treatment. For this weekly treatment, the cancer team that had been consulted in the hospital told him this is nonsense.

And of course they were thrown out of the room immediately. I knew two things. I’m not going to bring apostas with this guy. The first bat. And I’m also not at the first back going to challenge this intervention. And I can’t. You know, I was working with my interprofessional team and they did a much better job than I think I would have been on my own of. Like, tell us more. Like, how did you learn about this? Like, what is this supposed to do? What are you hoping? How will you know it’s working sort of thing. Is there anything that you’re worried about with it? And we were able to engage in a conversation about providing him the best care possible while he continues to engage in this therapy. Right. That could include a robust home care plan to manage his symptoms.

And that’s how it segued into this hospice conversation. So it didn’t have to be hospice or this treatment that you’re pursuing. At the same time, we try to learn a lot about the person who is prescribing this medication because we are worried about harm and fraud. We were nicely able to align with the patient, learn about his goals and values, and it came to a good conclusion. But it really made me think about, you know, how we approach patients who are engaging in those things that not only do we not think they’re helpful, but this is actually harming you. But I have to be careful how I present you with this because you’ve already sort of dug into a worldview that isn’t going to accept necessarily my opinion.

Eric 14:29

Yeah, yeah.

Laura 14:32

Oh, could I just jump off, please, Laura? Adam shared. When Adam introduced the idea of this paper to me, I came to it from the standpoint of a clinician who’s really interested in serious illness communication training. I direct our Powered by Vital Talk program here at the University of Michigan. I’m a big Vital Talk apologist, and I really like the idea that we can create communication tools and roadmaps to be able to teach our fellow clinicians how to effectively have these tough conversations with patients. And it really is tough when a patient comes to you with a lot of skepticism about the therapies that you have to offer and what you have to recommend.

And they’re wanting to pursue these treatments that, as Adam said, may in fact be harmful, and it may prevent them from engaging in some of the other recommendations that we think would really make a difference and would really help. So I came to this from the perspective of wanting to really think deeply about how to lead these conversations with an empathic. I think for many of these patients, the seeking of these alternative therapies that may potentially be harmful is often a manifestation of some underlying distress or an unmet need, a concern about feeling abandoned by conventional medicine, especially for those who have a serious illness for which there are not many good options to ameliorate the disease, to prevent progression, to extend their life. So I just was seeing a lot of distress in these patients who are pursuing some of these interventions. And I just wanted to think really hard about how we as clinicians could approach it with empathy and humility.

Alex 16:18

Yeah, that’s great. And I just have to highlight before we move on and hear what Jill has to say about this, that Laura self identified as a vital talk apologist.

Laura 16:29

It’s true.

Alex 16:30

What, what is apology? Why did you say that?

Laura 16:34

I find that being able to teach fellow clinicians some very practical techniques for how to have serious illness conversations skillfully has really helped me refine my skills. But also I think helps my colleagues who go into some of these conversations feeling really stressed and distressed and worried that they’re not going to go well. I, I think sometimes these patients are labeled as, when really what they are is distressed and they’re experiencing strong emotions. And so I think identifying some tools to be able to approach them with the humanity and empathy that they deserve is very gratifying for me. And I think the vital talk tools, I think the REMAP framework for conducting a goals of care conversation can be really translated and applied to being able to understand patients values and priorities surrounding the pursuit of pull it, you know, pull it therapies. So I, I just find it a very useful analogy.

Eric 17:36

Jill, you, you live in an interesting intersection, right in integrative medicine. How did you think about this when you’re together thinking about writing this article?

Jill 17:47

Yeah, I, I thought it was when Adam introduced it to me, my initial reaction was like, oh, they’re going to write about how bad all these things are. And you know, how do we, how do I really bring the voice of integrative medicine into the conversation? So I think that’s where my initial thoughts were. And then as I’m listening now also, I think the other thing that’s just very different in the space I work in is that I’m not always in the space of the high emotion content patient where I mean the patient population I work with runs this huge gamut from just my average primary care patient who wants to improve their life and prevent illness through integrative modalities, all the way to the patient that’s battling serious illness and wants to use these range of therapies. And so I think I just have this long gamut or a long range of using this conversational techniques, discussing these therapies in a lot of different settings.

Alex 18:40

And two of you are med peds and Jill’s family medicine. So you have the potential to work with kids too. Is this different when it’s the parents arguing for this treatment for their child?

Adam 18:55

Lauren, Jill, I’d be interested to hear your perspectives, but I’ll say I think the themes are similar. I think the emotion is amplified when we’re talking to parents, especially seriously ill children. And I’ve had a couple of cases similarly where parents are pursuing treatments that not only do I think that they don’t make a lot of physiologic sense, but I’m deeply concerned about. And in addition, my work in palliative care, I also am a clinical ethicist. And the ethics change there. Right. So obviously, if you’re an adult, you have the ability to do whatever you want to do. There’s not much I can, I can do about that.

For children, it’s very different. If I have reason to believe a parent is going to engage in a therapy that poses a harm to a child, then I’m called upon to intervene there. So the ethics is a little different, but my clinical experience is just the emotion is much higher in these instances.

Laura 19:44

I agree with what Adam said and I think we prioritize personal autonomy in Western medicine. And so an adult patient who has the medical capacity to choose to pursue a potentially safe, low evidence therapy, I’m going to of course, allow them to do so after a thoughtful conversation about the potential harms. But it’s completely different, right when we’re speaking with a parent of a minor child who does not necessarily have the ability to say no or to decline that treatment.

And so we definitely prioritize non maleficence in that situation where our top priority is to do no harm to that child. And so we might find ourselves as clinicians in a situation where we’re needing to report that parent to Child Protective Services. And of course, that’s an extremely adversarial situation that we never want to end up in. And so I think these communication techniques that we talk about in our paper are that much more essential to master and to be able to use when you’re speaking with a distressed parent.

Eric 20:47

Well, let’s start off with that. So I’m going to present a case. This is a daughter of a patient with widely metastatic cancer, very poor functional status, mets to the lung, has brain mets, that’s making them confused. So we don’t think that they have capacity. I’m going to throw some of that, the pediatric stuff. Now. We’re dealing with the surrogate decision maker. The daughter was listening to Joe Rogan in January where Mel Gibson was on. And he, Mel Gibson said he had this friend who took Ivermectin and that’s all that they took and their cancer disappeared. They hear from the oncologist that there Are no more cancer directed therapies. Daughter comes to you and says, you’re telling me there’s nothing else. I see that Ivermectin is a treatment. Joe Rogan’s show said so. I did some research.

Alex 21:44

Competing podcasts for people who are listening.

Eric 21:46

We definitely. I think we do better.

Alex 21:49

Yeah. Yeah.

Eric 21:50

Can you prescribe him some Ivermectin for his cancer? Because I don’t want him to die. And you’re not doing anything else for him?

Laura 21:58

Yes.

Eric 21:59

You want to turn up the volume on that, Alex? Does that sound pretty good?

Alex 22:03

That’s pretty good.

Laura 22:05

You know, first, as the clinician, I would take a deep breath and check my own pulse.

Eric 22:11

Okay. Because I’m already running out the door at this point. I think that’s a better response than me.

Laura 22:18

I mean, I’m hearing that that feels very real to me. I don’t know, Jill. And I mean, that feels like something that we could encounter that feels really real. And I. I think, like, gosh, my first step there is to acknowledge the distress that that family member must be feeling on behalf of their loved one. Right. Like, this is an absolutely horrible situation. And so use those skills of verbal empathic responses that we all know as clinicians. Right. Like, it must be devastating to hear that news from your oncologist that we don’t have any further treatments directed to be able to treat your advanced cancer. That is awful. And let that sit in the room. I think, like, before we do anything, we have to show them that we empathize with the really difficult position they’re in. So that’s, like, for me, that’s step one, two, and three. And, like, unpacking that emotion, it might take a little bit.

Eric 23:23

So not jumping straight into the cognitive answer. Ivermectin doesn’t work.

Laura 23:28

Never. Eric.

Eric 23:28

How dare you bring something like that into my office. Get out. No, you’re not going to do that. You’re going to address emotion first.

Adam 23:36

The response that that’s dumb and you’re dumb for wanting it is not the appropriate response. I would absolutely empathize, and I would go on to even validate and be right. I see how hard you’re working for your dad. Right. Because you’re hearing from your cancer doctor that we have nothing left to offer to treat his cancer. And I’m hearing you say that can’t possibly be true. I love my father. I can’t lose him. There must be something. And I think that makes a lot of sense. I would feel the same way. So, I mean, and we Talk about this with a lot of kind of conflict and concept, conceptualize this is a conflict. But underneath the strong statements from the family members is a deep love.

Eric 24:14

Right?

Adam 24:14

And I’m always reminded of that quote, the opposite of hate isn’t. The opposite of love isn’t hate. It’s indifference. And when family members are coming at you hot about anything, it is always because they deeply, deeply love this person that they are caring for. And so I recognize that and acknowledge it. Because chances are, if they’re coming to you for this, like ivermectin, please, someone else has told them it’s done, right? Family members, another doctor. So they’ve already been rejected. They’ve already said, that’s a dumb thing, and you’re dumb for wanting it. And so I find that when I validate that, oh, my gosh, what a loving daughter you are, your father’s lucky to have you.

I can see how hard you’re fighting. Like that brings down the temperature in the room. And you align your. You can begin then the work of aligning yourself with that person. You know, what are we hoping the Ivermectin is going to do? What are we hoping for? However long your father has left to live, what are we hoping that looks like? Let’s talk about that. I want that same thing. But, Jill, I know you. I think this is a theoretical conversation for us, at least with the Ivermectin. I know this is a very real conversation that you had with people.

Jill 25:16

Yeah, I was thinking not to the same intensity, though. I think the intensity is ratcheted up from what I deal with most of the time in my offices. But what I’m thinking, too, is once I do all those things you guys are talking about, the next thing I’m going to do is really understand if anyone has done a study on ivermectin and cancer. I think the answer is no. One of my integrative oncologists just looked this up recently. But I’m going to do a little bit of PubMed searching and I’m gonna just get a sense of if there’s one RCT with 20 people or nothing.

Eric 25:45

So are you doing like a pause? Do you have them come back? How? Because, like, at this point, like, what’s happened to me in these scenarios, like, I don’t know. I’ve heard a lot about ivermectin and Covid. Like, we have pretty good evidence that it doesn’t work there. I don’t know about cancer. How are you fitting that into the conversation?

Jill 26:02

Yeah, it depends on the setting. So some of these, you know, if I’m doing a full consult and someone’s bringing that up and it’s a topic I have never dug into before, I’m probably paus. Pausing again. Usually mine’s not like, deathbed, give it to me now. Mine’s usually like, hey, can we talk about this? And I can bring them back in a little bit to let them know that I did some research and here’s what I found. So having like a secondary conversation after the first conversation, I have done PubMed searches right. In the room with a patient.

You know, say, hey, let’s look this up together. Let’s see together what evidence there is. Like, oh, there’s one really small RCT. If there’s a stuff. If there’s stuff there, then I might say, hey, give me a chance to digest this stuff through my medical lens and then come back and let’s talk about it versus, look, nothing’s here. Let’s try a couple more search terms. And together we realize, like, gosh, from a science, Western science, like, perspective, this actually hasn’t been looked at. Like, I can’t tell you if this is going to, you know, help or hurt.

Eric 26:59

And I want. Go ahead, Laura.

Laura 27:01

Oh, I was just going to add that I think in addition to sort of doing our homework as clinicians, like Joe mentioned, I think one of the things we really emphasize in this, in our article is really taking on the role of a student. Right. Like, you know, maybe it’s not Ivermectin, but maybe it’s some other medicine or intervention that we’re just completely unfamiliar with or that hasn’t been researched at all by Western practitioners. And so I’m going to go into my humble inquiring student mode. Right. Like, tell me what you know about ivermectin for cancer therapy. Tell me where you. Where you learned about this.

Do you know other friends or family members who’ve used this therapy? What have they used it for? What have they learned about it? What results did they get from it? And I think, you know, it’s. It’s our way of exploring the patient’s perspective, you know? Right. We always start any goals of care conversation with exploring what the patient understands about their condition. And so what’s your understanding of what you hope to get out of using this Ivermectin? And then I think that can lead to a really thoughtful, deeper conversation about benefits and potential pitfalls of the treatment. Right. Like, what are you hoping the ivermectin will accomplish and how will you know that it’s doing what you hope it will do? If, you know, if I prescribe this, how are we going to monitor for side effects?

And I may not ultimately feel comfortable prescribing it and we can continue the conversation from there. But, but I think starting off from a place of humility and an interest in learning more about the therapy will always benefit you as the clinician. I think also they’re coming to you with this because at least to some degree they, they trust you to not be judgmental about it. I, I, I doubt they would necessarily come to you to prescribe this if they, they didn’t think you were someone they could trust and be at least open minded to hearing their perspective. So I want to show them that, that in fact I am open minded and to gain their trust even further.

Eric 29:02

Okay, you talk to her. She says, I’ve done PubMed searches on this. I recognize that there are no human randomized control studies, but here’s a paper from 2022 showing anti tumor activity in mice and cell cultures. And here’s another paper in breast cancer that shows activity when combined with chemotherapy. So there’s actual papers out there, but there’s no high level evidence and it’s more theoretical in your interpretation. What the heck do you do now? Okay, here’s ivermectin. Knock yourself out.

Adam 29:41

If I’m going to wear my ethics hat here for a minute, I would say that it is one thing to say like I will partner with you while you pursue this therapy.

Laura 29:48

Right?

Adam 29:48

I can’t control what you do. But what we can’t control is what we do. And so if we think some, if someone is asking for a therapy that we think not only will it not provide benefit but it has a higher likelihood of harm, we’re under no obligation to provide that. And I have, and I’ve had to set that limit with patients before. It’s like, no, I want this one very specific thing. And it’s like, I’m so sorry. I wish this is something I could do for you. This simply doesn’t have enough evidence for me to feel comfortable prescribing that for you. I would like to talk to you about other things that I think will provide benefit if you’re open to that.

And so I’m always, it’s never abandonment, it’s never, that’s a dumb thing. Get out of my office. It’s always, I want to give you the best care possible. It may not be this thing that you’re asking for, and I understand that you may go elsewhere to pursue that and you are welcome to do that. But let’s talk about what I can do for you here today.

Laura 30:42

Yeah, I think also that’s where exploring the patient perspective on the front end is most useful. Because if they are hoping that, for example, the ivermectin will alleviate some cancer related pain they have that’s been poorly controlled, I’m, you know, hypothesizing. Wow. We have so many other tools that have a large evidence base to support their use for alleviating cancer related pain.

May I share with you what some of those tools are and what they can look like and how they might potentially benefit you? And so again, I would rather open the conversation to more ideas and discussion rather than, you know, close the conversation down by dismissing their, their concerns. So I think that’s why all that work up front is essential.

Jill 31:24

I was going to say too, just like sometimes that early conversation, like Laura, you were saying is so important because you also figure out that what they were demanding when they first brought up this treatment is actually not really at the root of what they’re looking for. And so often, like, if you have a good relationship with them and you can understand what that root is, there’s so many other ways to come at it and they’re willing to back away. Like, I think it’s rare actually that I get that, are you going to do it for me? And if you won’t, you know, I’m going to walk away way more often. It’s, you know, like, oh, you don’t think it’s a good idea? Why not? And what else can we do and end up in a totally different place.

Eric 32:02

And I also say what I loved about your article is a lot of like all the evidence that I just pointed like this really marginal, like this is not level of evidence that we would use to prescribe drugs. But I haven’t yet actually talked about risk. Right. Or what’s the downside of it, whether it be health risks, financial risks, all of these other potential risks. And your article dives into that. And I think there’s a really good analogy when we talk about feeding tubes in people with advanced dementia.

You can talk all you want about the lack of benefit, but if you don’t talk about risk, risk, it’s not gonna go like, what are you most worried about is honestly, it’s not the lack of benefit. It’s like a third of people need chemical or physical restraints to keep that in. They’re not Gonna be moved to the dining room. They may have increased risk for pressure ulcers. All of these risks for. I’m gonna put feeding tubes in advanced dementia as a pluot. Poulet.

Alex 33:03

That’s a fruit.

Adam 33:04

A pluot is a fruit.

Eric 33:05

It is also a pluot. Fine. Has a nut in the middle.

Eric 33:16

So yeah. I would just want to. Any other thoughts about how you incorporate risk as part of this discussion?

Alex 33:21

Right.

Laura 33:22

I think for me it always goes back to what are your hopes? What are you hoping for from this? Pull it from this, you know, potentially unsafe low evidence therapy. I don’t use the, you know, acronym pull it with my patient necessarily, but I’m thinking it in my mind. Mind. You know, what are, what are you hoping will be the result of trying this therapy? Like, what are you hoping you will achieve from placing a dob off tube and artificially feeding grandma? And how will we know if it’s helping or not? And I want to share with you some of the things I’m worried about.

And if your hope is for grandma to get stronger, to be more interactive with family members, I’m actually really worried that placing this dab off tube will actually get us farther away from that goal, not closer to it. And here’s why. And so for me, whenever I’m incorporating risk, it’s in the context of what they’ve shared with me are their values and priorities and hopes for the result of that intervention. So I’m a broken record, but it always goes back to why they’re even thinking about this in the first place and what they hope to get out of it.

Adam 34:23

The only thing I would add is that if you find yourself arguing over studies and methodology, right. You’re doing it wrong. So if you are trying, if you are arguing about the argon light therapy, if you’re arguing about like the details of the interthecal sense, like, you are missing the bigger picture. Because I think for, especially in these high intensity situations, these are, these are emotional statements, right? These are, this is emotional decision making. And, you know, bringing cognitive argument to that. I think you’ll always be, you’ll always be at a disadvantage.

Eric 34:55

But there’s a role, right, for the cognitive part?

Adam 34:58

Absolutely there is. But I think that, honestly, I think the attending to that emotion, that aligning with the patient, validating their approach or validating the hopes that underlie this request is 90% of the conversation. And like Jill said, most of the time, then that cognitive probably kind of melts away. Oh, you don’t think this is a great idea? What else can we do? And so again, at the time that I have found myself like googling things and pointing up. But this look at the study design. This is flawed. Like, no, I’m doing it right.

Alex 35:28

I want to bring a few other ideas into this discussion. The first is prospect theory. There’s this. We did a podcast on Nudges and Kahneman and Tversky. There are many names for this. Cognitive biases. And this idea of loss aversion is that people’s decision making changes. When people is facing potential losses and they’re often willing to tolerate a greater risk because of the threat of loss. And when this is one of the reasons why it’s so emotionally amped up, because we’re talking about death here, you know, arguably the greatest loss that one can face either in themselves or their loved one. So that’s one thought.

And another related thought is, is there’s a strong sort of principle in America of allowing patients to try things that are potentially unsafe and risky. And that doesn’t just extend to medical therapies. The major rock climbing magazine has an obituary section. So why should it be different at the end of life? In fact, the Right to Try act signed into law in 2018, allows patients with life threatening illness to access investigational drugs. Folks that have completed phase one testing but are not yet FDA approved. So in some sense, I guess what I would just kind of want to point out here is aligning with patients that we understand, not just the emotions that are driving this, but also that sort of calculus that they’re weighing in their mind and why it might be different closer to the end of life. And that in many facets of of American life, we allow people to make incredibly risky decisions. Any thoughts about those reflections?

Adam 37:25

I would just say that this article isn’t about what are patients allowed to do. Right. It is how do we react in the face of it. Again, how can we approach patients with this humble inquiry that isn’t dismissive? Especially when we say some 80% of patients with cancer will engage in some form of complementary alternative medicine, broadly say, dismissing all of it? You’re going to alienate 80% of your patients. And how can you continue to partner with the person who is making decisions that you may disagree with while also still setting those boundaries? You’re allowed to do what you’re going to do. You can’t force me to support or materially be complicit in an intervention that I think is going to harm me, that violates my professional ethic.

Eric 38:11

So setting that boundary that you’re not going to prescribe the drug because you’re worried about the risks and you’re seeing no benefit and you’re understanding how important this is to them, but you’re also setting a potential limit.

Adam 38:25

Yeah, absolutely. And not just prescribing some. There have been cases where people have said, hey, in order so I can pursue this therapy, will you order this battery of tests? Will you order these different things? And saying it’s like, well, this doesn’t make a lot of sense. I recommend you go back to your provider who’s doing this to get that testing if that’s what you need. But I can’t endorse this. And I’m worried about your safety. And so this is why. So that same kind of idea that we shouldn’t be supporting therapies that we think are potentially well.

Laura 38:53

And I think to jump off that, Adam, one thing I hear a lot from my seriously ill, or more often terminally ill patients for whom we don’t have any further disease directed treatments that are likely to benefit them, is that that leave no stone unturned philosophy, I think that is also very American, right? Like we have to try everything possible, no matter what, even if there’s almost no chance of it being beneficial, we’ve got to just try it. And I think sometimes I feel that it’s my duty, given my professional background and expertise, to share that there actually are trade offs to leave no stone unturned. Right.

And those trade offs are real. Right. We might be sacrifice. You know, if you have to go to an infusion center for three hours, three days a week, that’s time you’re not spending with your family and friends making meaningful memories. So I think, you know, I agree, Alex, that’s sort of a philosophy that a lot of people in Western culture hold. But I also think sometimes we forget the trade offs and the other things that we’re losing when we’re making a decision to pursue some of these PULETs.

Eric 39:57

So I, I love that. That’s honestly my biggest pet peeve. Often, like I see so many times we talk about the lack of benefit, but we don’ about the trade off. Like if somebody is dying and there’s a one in a million chance something’s going to work, like, why not? But there’s a real risk, like worsening delirium, seizures, hepatic failure, like then all of a sudden, now we’re talking about trade offs. And I Think people understand that much better than this, this idea. Oh, we’re just not going to try it because we don’t think it’s going to work.

Alex 40:29

And Ivermectin and just so we can sort of articulate some of the harms. Right. What has it been associated with? Confusion, ataxia, seizures, hypotension.

Eric 40:39

Yeah. And you worry about, especially when you’re giving with other medications, liver issues. It’s generally, and I bring it up because it’s generally a fairly well tolerated drug.

Alex 40:49

Right.

Eric 40:49

But there are risks. Again, if you PubMed it, you will see articles about antitumor activity, but there is really no high quality evidence.

Laura 40:58

Right. It’s not going to help you. Why put yourself at risk of experiencing these potential harms? Why would we do that? Yeah.

Eric 41:08

So I did try to ramp it up, pick the hardest drug I could. So I appreciate it. I wonder if each of you, as you think about this, any particular pearls, kind of like if you had a magic wand that you could think about how providers address. I was going to say pluots again, not pluots, PULETs. With their patients. What would you use that on? Jill, I’m going to turn to you.

Jill 41:35

I’m going to steal Laura’s line and just say, I think it’s all about the upfront communication. So just sinking into the conversation. When you feel your heart rate start to rise, when someone’s bringing you a request, just settle in your body. Remember you’re just here to connect with the person and have a thoughtful, authentic conversation. And it, it will really get you where you need to go.

Eric 41:56

I, I think Laura, another one, I.

Laura 42:00

Would say try very thoughtfully to dig into the underlying emotion and fear driving the request. And if you can get there, you can often provide other opportunities to help the patient that are much safer and likely to be much more beneficial.

Adam 42:19

And Adam, I would say Laura mentioned before, humble inquiry. And I would say avoid the opposite. Right. Which is false certainty. And so if you’ve heard that ivermectin and cancer is not a great idea, like, you know, make sure that you have done that. Are you aware that there are pundit studies? Right. Because I’ll bet you they are. And if you are speaking with false certainty that they catch, then you’ve lost any kind of authority or opportunity to partner better.

Eric 42:49

I love that. Again, I think I’m, I’m bringing up ivermectin. You could pull up probably any drug, herb, anything out there. There’s going to be a PubMed study out there and it’s going to say something that you probably strongly disagree. Like you could find one article. I think that’s a great example because there’s a lot of bad medicine out there. I. I just try to transition to the song. Poor transition.

Alex 43:20

(singing)

Eric 44:12

So many Bon Jovi songs. Living on a Prayer. Another good one for this episode. Yes. Adam, Laura, Jill, thanks for joining us on this podcast. That was awesome.

Adam 44:24

Thank you so much.

Jill 44:25

That was really fun.

Eric 44:26

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

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