Continuum Audio

In this episode, Lyell K. Jones Jr, MD, FAAN, speaks with Aaron L. Berkowitz, MD, PhD, FAAN, who served as the guest editor of the February 2026 Neurology of Systemic Disease issue. They provide a preview of the issue, which publishes on February 2, 2026.
Dr. Jones is the editor-in-chief of Continuum: Lifelong Learning in Neurology® and is a professor of neurology at Mayo Clinic in Rochester, Minnesota.
Dr. Berkowitz is a Continuum® Audio interviewer and a professor of neurology in the Department of Neurology at the University of California, San Francisco, in San Francisco, California.
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Host: @LyellJ
Guest: @AaronLBerkowitz
Full episode transcript available here
Dr Jones: The human nervous system is so complex. You can spend your whole career studying it and still have plenty to learn. But the human brain does not exist in isolation. It's intricately connected with and reliant on other bodily systems. When those systems go awry, sometimes the first sign is in the nervous system. Today we will speak with Dr Aaron Berkowitz, an expert on the neurology of systemic disease, and learn a little about how these disorders can present and what we can do about it.
Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about subscribing to the journal, listening to verbatim recordings of the articles, and exclusive access to interviews not featured on the podcast.
Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum: Lifelong Learning in Neurology. Today, I'm interviewing Dr Aaron Berkowitz, who is Continuum's guest editor for our latest issue of Continuum on the neurology of systemic disease. Dr Berkowitz is a professor of clinical neurology at the University of California, San Francisco, and he has an active practice as a neurohospitalist and in outpatient general neurology---and, importantly, as a clinician educator. In addition to numerous teaching awards, Dr Berkowitz has published several books and also serves on our editorial board for Continuum. Dr Berkowitz, welcome. Thank you for joining us. Why don't you introduce yourself to our listeners? 
Dr Berkowitz: Thanks, Lyell. As you mentioned, I'm a general neurologist and neurohospitalist here in San Francisco, California at UCSF and very involved in resident education as well. And I was honored, flattered and a little bit frightened when I received the invitation to guest edit this massive issue on the neurology of systemic disease. But I've learned a ton, and it's been great to work with you and the incredible authors we recruited to write for us. And I'm excited to have the issue out in the world. 
Dr Jones: Yeah, me too. And you and I have talked about it before: you're one of a very small group of people who have guest edited multiple issues on different topics, right? 
Dr Berkowitz: That's right. I did the neuroinfectious disease issue in… was it 2020? 2021? Something like that. 
Dr Jones: Yeah. So, congratulations, more people have walked on the moon than done what you've done. And I'm looking forward to chatting, Aaron, and really grateful for your work putting together a fantastic issue. I think our listeners will appreciate that the nervous system does not function in isolation. It's important to understand the neurologic manifestations of diseases that originate within the brain, spinal cord, nerves, muscles, etc., but also the manifestations of diseases that begin in other systems and, you know, may masquerade as a primary neurologic disorder. So, it's obviously an important topic for neurologists, since many of these patients are receiving care in another setting, perhaps from another specialist. I almost think of this issue of Continuum as a handbook for the consultant neurologist, inpatient or outpatient. I don't know. Do you think that's a fair characterization of the topic?
Dr Berkowitz: Absolutely. I completely agree with you. I think, yeah, many of us go into neurology interested in our primary diseases, whether it's stroke or Parkinson's or neuropathy or particular interest in neurologic symptoms, whether they're cognitive, motor, sensory, visual. And we quickly learn in residency, right? As you said, a lot of what we see is neurologic manifestations of primary diseases. So, I don't know how similar this is to other training programs. But it seemed like, if I'm remembering correctly, my first year of residency was mostly on primary neurology services, general stroke, ICU. And we moved into the consultant role more in the PGY-3 year the next year. And I remember explaining to students rotating with us on the consult services, this is actually much more complex in a way, because the patient has some type of symptom in a much broader and much more complicated context of multiple things going on. And I call it "neurology in the wild." There's, like, neurology of, this patient's had a stroke and we know they have a stroke and we're trying to figure out why and treat it. That's all interesting. But our question here, is there a stroke needle buried in this haystack of all of these medical or surgical complications? And learning what I call neurology of X, which is really what this issue is; as you said, that there's a neurology of everything. There's a neurology of cardiac disease. There's a neurology of the peripartum. There's a neurology of rheumatologic disease. There's every new treatment that comes out in oncology has a neurology we learn, right? There's a neurology of everything. 
Dr Jones: There's a lot of axes, right? There's the heart-brain axis and the kidney-brain axis. And… I think we cover everything except the spleen-brain axis, which maybe that's a thing, maybe not. I'll probably hear from all the spleen fans out there. So, I want to do a little bit of an experiment. We're going to do something new today on the podcast. Before we get into the questions, we're going to start with a Continuum Audio trivia question. So, this will be a first time ever. Dr Berkowitz, we all know that chronic hyperglycemia, or diabetes, can lead to many neurologic and systemic complications and that optimal glucose control is our goal. For our listeners, here's the question: what neurologic complication can occur from correcting hyperglycemia too quickly? What neurologic complication can occur from correcting hyperglycemia too quickly? Stick around to the end of our interview for the answer. So, Aaron, let's get right to it. You had a chance to review all the articles in this issue on the neurology of systemic disease. What do you think in all of those is the most exciting recent development for patients who fit into this category?
Dr Berkowitz: Yeah, that's a great question. I think we talked about when we were putting this issue together, right, a lot of the Continuum subspecialty topics; there should have been updates on particular disease diagnostics, treatments, new phenotypes. Whereas here probably a lot less has changed in primary heart disease, primary cancer. As I'd like to say to our students trying to excite them about neurology, most specialties have new treatments, but I can name a large number of new diseases, right, that have been discovered since we've been out of training. So, a lot of the primary medicine stays the same, and the neurologic complications stay the same. But probably the thing that many readers will want to keep handy and will probably be much in need of update again in three years are the neurologic complications of all the new cancer treatments. So, if we think back to I finished training just over ten years ago when a lot of the fill-in-the-blank-umabs were coming out, CAR T therapy, and we were starting to see a lot of neurology, I remember, related to these and telling the oncologists and they said, oh, you just wait. We are seeing at the conferences that there's a lot of neurology to these. And I feel like that is always a moving target. And I think we are seeing a lot of those and it's hard to keep up with which treatments can cause which complications, which syndromes and which severities require holding the treatment when you can rechallenge longer-term complications of CAR T cell therapies now that we've learned more about the acute complications. So, Amy Pruitt from Penn has written us a fantastic article for this issue that covers a lot of the updates there. And I learned a lot from that. I feel like that's the one that just like every time the carnioplastic diseases are reviewed in Continuum, it seems like the table is another page longer from your colleagues there in Rochester teaching us about new antibodies. And I feel like, for this issue, that's one of the areas that felt like there was a lot of very new content to keep up with since last time. 
Dr Jones: That's good news, right? It's good that we have new immunotherapies for cancer, but it does lead to neurologic catastrophes sometimes, and it is a moving target, really rapid. So, you mentioned that just over ten years ago you finished your training and now we see a lot more of these complex immunotherapy-related neurologic complications. What about in the other direction? Are there any things that you see less commonly now in your practice than you might have seen ten years ago right when you were finishing training? 
Dr Berkowitz: I would say no, I think. I think we're seeing a lot of new stuff, and we're still seeing a high volume of the classic consults we tend to get, whether that's altered mental status in a patient who's systemically ill; weakness or difficulty reading from the ventilator in a patient who's critically ill; patient has endocarditis and has a stroke hemorrhage or mycotic aneurysm, what do we do? Yeah, one of the parts that was really fun and educational editing this issue is, I really wanted to ask the experts the questions I find that are really troubling and challenging and make sure we could understand their perspective on things like the endocarditis consult, which I always feel like each time there's some twist that even though the question is what do we do about this stroke and/or hemorrhage and/or aneurysm and is surgery safe? It seems like each time I always feel like I'm reinventing the wheel, trying to really sort out how to think about this. And we have a great article from Alvin Doss at Beth Israel and Steve Feskey from Boston Medical Center. It covers a lot of cardiology, as you know, in that article about a great section on endocarditis where every time it came back for review, I would say, but what about this? This comes up. What about this? Can you explain how you think about this for our readers? I don't know. I'd be curious to hear your perspective. It sounds like we agree on what has become more common. I don't think anything in neurology seems to become less…
Dr Jones: Well, no, I guess we haven't really solved anything, I guess we haven't cured any problem. But that's okay, right? I mean, it's building on an established foundation of experience and history in our field. And you know, we mentioned earlier that in many ways this issue is kind of like a neurology consultant's handbook. We did something a little different with it in that sense. In addition to you serving as the guest editor, you have authored an article in the issue. It touches on something that we've talked about a couple of times, and I'd be interested to hear you talk through it with our listeners a little bit on how to approach the neurologic consultation. Tell us a little more about that and your article and how you approached it. 
Dr Berkowitz: Oh, yeah, thanks. Well, thanks first of all for inviting me to think about a sort of introductory article to this issue. And I was trying to think about what to write about because, as you've said and we've been talking about, no one could know every neurologic complication of every medical disease, treatment, surgery, hospital context. Probably many of us don't even know all the muscle diseases, right, within neurology. So how could we know all this stuff? And we need some type of manual from our colleagues that can explain, okay, I know this patient has inflammatory bowel disease and they've had a stroke. Is that- are these related? Are these unrelated? And I thought the articles kind of answer all of these questions. What would I say beyond this patient has disease X and is on drug Y? Well, look up in this issue disease X and see what the neurology can be, common and rare and how often it's associated, how often it's the presenting feature, how often it means the treatment is failing, etc. I thought, I'm not sure there's much to say there. That's about a paragraph. And I thought, well, let's think even more broadly about neurologic consultation. And as you know, I like to think about diagnostic reasoning and clinical reasoning. And we talk a lot about framing bias right? And I think that is very common in consultative neurology because we'll be told in the consult or in the page or E-consult or whatever it is, this is a blank-year-old blank with a history of blank on treatment blank. And right away your mind is starting to say, oh, well, the patient just had heart disease, or, the patient is nine months pregnant, or, the patient is on an immune checkpoint inhibitor. And whether you want to do it or not, your mind is associating the patient's neurology with that. And it's- even if we know we're framing or anchoring, it's hard to kind of pull away from that. And most of the time, common things being common, a patient with cancer develops new neurology, It's probably the cancer, the treatment, or sometimes a paraneoplastic syndrome. But I've definitely found if you do a lot of inpatient neurology and a lot of consults that you're seeing so much and you have no choice but to apply these heuristics, because you're seeing a lot of volume quickly and the patients are in the hospital or they're being closely followed and outpatient setting by another specialist. You presume if you didn't get it quite right the first time, it's going to come back to you. And there's a little bit of difficulty figuring out, this is a case, actually, of all the altered mental status in acutely ill patients I got today, this is the one I should dig deeper in that I think this could turn out to be a stroke or encephalitis as opposed to delirium. I felt like that I really haven't approached that except knowing that it's easy to fall into traps. And so, I started to think about framing bias. You know, we talked about if we become aware of our biases, right, we're better at not falling prey to them. But it's subconscious. So, we might be applying it without even realizing, or even saying, I might be framing this case the wrong way, you can go right on framing it the wrong way. So, I want to kind of get a little more granular on what types of framing biases actually are relevant, specifically, to the console setting. And so, I tried to come up with a few more specific examples and try to think about ways that we could at least have a quick, if our knee-jerk is to associate primary disease X that the patient has or primary treatment X with neurologic symptom Y, what's at least a quick counter-knee jerk to say, what if it could be something else? So, for example, one of them I call "low signal-to-noise ratio bias." Altered mental status in the acutely ill hospitalized patient. What would you say, Lyell? 99 out of 100- 99.9 out of 100, it's not a primary neurologic disease. Is that fair to say?
Dr Jones: Very high, yep. I agree.
Dr Berkowitz: Yeah. But could it be a stroke? Could it be non-convulsive status epilepticus, meningitis encephalitis? So, how do we sort of counteract low signal-to-noise ratio bias, acknowledging it exists, acknowledging most of the time there is a low signal-to-noise, that it's not going to be neurology---to just for example, use the time course. This is pretty acute. Have I convinced myself this is not a stroke or a seizure or an acute neurologic infection? And if I'm not sure at the bedside, should I err on the side of more testing? Or the "curbside bias," as I call when your colleague just sends you a text message on your phone, No need to even open the chart, Dr Jones. Patient had a cerebellar stroke. Incidental. They're here for something else. Aspirin, right? Just like a super tentorial stroke. And you might reply thumbs up. And then imagine you open the CT scan and it's a huge cerebellar stroke with fourth ventricular compression- and patient can hide a lot of stroke back there, might just have a little ataxia. You were curbsided and that framed you to think, oh, they asked me, is aspirin okay for a cerebellar stroke and I said yes, without realizing actually the question should have been posed is, how do you manage a huge stroke with mass effect in the posterior fossa? So, these types of biases, I come up with five of them, I won't go through all of them. I'm in the article to sort of acknowledge for the reader, most of the time it's going to be what you look up in this issue, but how to think about the times where it might not be and how to be more precise about what framing is and different types of framing that occur specifically in the consultant arena.
Dr Jones: And I think the longer we practice, the more of those low-frequency exceptions that you see. And, you know, and then it sticks in our mind and sometimes the bias swings the other way; people, you know, think primarily about the low frequency. And so, it's tricky. And what I really enjoyed about that article, we started talking about this probably more than a year ago, and more than a year ago, I would say relatively few clinicians were using a now widely popular large language model for clinical decision-making; we won't name the model. And now I think most clinicians are using it almost every day, right? And I think it puts a premium on how to think and how to engage with the patient, and less about the facts and the lists that a lot of conventional medical education really is derived from. So, I really appreciate that article. We can pat ourselves in the back. We had some foresight to put it in the issue, and I think it's a great addition to it.
Dr Berkowitz: Thank you.
Dr Jones: So, the list of potential topics when we think about the neurologic manifestations of systemic disease, we tend to break it down by organ systems, right? But the amount of things that could end up in the issue is almost infinite. Is there anything that, when you were putting this issue together---either in terms of the topics or editing the articles---is there anything that you wanted to include, but we just didn't have room?
Dr Berkowitz: I certainly won't say we covered everything, but I will say we were able to recruit a fantastic team of authors. And as you and I also talked about at the beginning, although you could say, we're doing the movement disorders issue, let's find all the top movement disorders folks who are expert specialists in this field, there's not really a neurohematologist or a neurogastroenterologist out here. So, you and I put our heads together to think of phenomenal general neurologists in most cases, some subspecialists who know a lot about this but were also excited to read a lot more about it and assemble the existing knowledge by the practicing neurologist for the practicing neurologist. And I think with that approach and letting folks have kind of, you know, I asked some specific questions. These are topics I hope you'll cover. These are vexing questions in this area. I hope you'll find some answers to how often can this neurology be the primary feature of this rheumatologic disease with no systemic manifestations and when should we look or as we mentioned, the complicated endocarditis consult. I won't say we covered everything. This could be, and is, textbook-sized, and there are textbooks on this topic. But I think on the contrary, authors came back and had sections on things that I might not have thought to ask- to cover. Dr Sarah LaHue, my colleague here at UCSF, I asked for an article, as traditionally in this issue, on the neurology of pregnancy in the postpartum state and included, I think probably for the first time in Continuum, a fantastic review of neurologic considerations in patients in menopause, which I'm not sure has been covered before. So, things that I wouldn't have even thought to ask for. Our authors came back with some fantastic stuff. And the ICU article by Dr Shivani Ghoshal, instead of focusing just on altered mental status in the ICU, weakness in the ICU---those are all in there---I also asked her to discuss complications of procedures in the ICU. How often do procedures in the ICU cause local neuropathies or vascular injury, these types of things.
Dr Jones: Yeah, me too. And I guess that's a great advertisement, that there probably are things that we didn't cover, but if there are, we can't think of them. We've done as best as we can. So now let's come back to our Continuum Audio trivia question for our listeners. And I'll repeat the question: what neurologic complication can occur from correcting hyperglycemia too quickly? And I actually think there might be two correct answers to this one. Dr Berkowitz, what do you think?
Dr Berkowitz: Yeah, I was thinking of two things. I hope these are the things you're thinking of as well. One is what I think used to be referred to as insulin neuritis, sort of an acute painful small fiber neuropathy from after the initiation of insulin, I think also called treatment-induced diabetic neuropathy or something of that nature. And then the other one described, defined and classified by your colleagues there in Rochester, the diabetic lumbosacral radiculoplexis neuropathy or Bruns-Garland syndrome or a diabetic amyotropy, I think, can also---if I'm not mistaken---also occur in this context; you should have weight loss in association with diet treatment of diabetes. But how did I do?
Dr Jones: Yeah, you win the prize, the first-ever prize. There's no monetary value to the prize, but pride, I think, is a good one. Yeah, those were the two I was thinking of. The treatment-induced neuropathy of diabetes is really nicely covered in Dr Rafid Mustafa's article on the neurologic complications of endocrine disorders. It's a rare condition characterized by the acute/subacute onset of diffuse neuropathic pain and some usually some autonomic dysfunction. And it occurs when you have rapid and substantial reductions in blood glucose levels. And you can almost map it out. There was a study from 2015 which is referenced in the article, which found that a drop in hemoglobin A1c of 2 to 3% over three months confers about a 20% absolute risk of developing this treatment-induced neuropathy of diabetes, and a drop of more than 4%, more than 80% risk. So, very substantial. And then in the other---we see this commonly in patients with diabetic lumbosacral radiculoplexis neuropathy---they have the subacute onset of usually asymmetric pain and weakness in the lower limbs that tends to occur more frequently in patients who have had recent better control of their sugar. We can also see it in the upper limbs too. So, you get a perfect score. Dr Berkowitz, well done. Again, I want to thank you. I want to thank you for such a great issue, a great article to kick off the issue, and a great discussion of the neurology of systemic disease. Today I learned a lot talking today, I learned a lot reading the issue. Really grateful for your leadership of putting it together, pulling together a really great author panel, and I think it will come in handy not just for our junior readers and listeners, but also our more experienced subscribers as well.
Dr Berkowitz: Thank you so much. Like I said, it was a big honor to be invited to guest edit this issue. I've read it every three years since I started residency. It's always one of my favorite issues. As you said, a manual for consultative neurology, and I learned a ton from our authors and really appreciate the opportunity to work with you and the amazing Continuum team to bring this from an idea, as you said, probably over a year ago to a printed issue. So, thanks again, Lyell.
Dr Jones: Thank you. And again, we've been speaking with Dr Aaron Berkowitz, guest editor of Continuum's most recent issue on the neurology of systemic disease. Please check it out, and thank you to our listeners for joining today.
Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. Thank you for listening to Continuum Audio.

Clinicians and patients are in a state of prognostic uncertainty when they are unsure about the future course of an illness. By embracing uncertainty while cultivating prognostic awareness, neurologists can serve the critical role of supporting patients and families through the living and dying process.
In this episode, Casey Albin, MD, speaks with Robert G. Holloway, MD, MPH, FAAN, author of the article "Managing Prognostic Uncertainty in Neurologic Disease" in the Continuum® December 2025 Neuropalliative Care issue.
Dr. Albin is a Continuum® Audio interviewer, associate editor of media engagement, and an assistant professor of neurology and neurosurgery at Emory University School of Medicine in Atlanta, Georgia.
Dr. Holloway is the Edward and Alma Vollertsen Rykenboer Chair and a professor of neurology in the department of neurology at the University of Rochester School of Medicine and Dentistry in Rochester, New York.
Additional Resources
Read the article: Managing Prognostic Uncertainty in Neurologic Disease
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Host: @caseyalbin
Full episode transcript available here
Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast.
Dr Albin: Hello, this is Dr Casey Albin. Today I'm interviewing Dr Bob Holloway about his article on managing prognostic uncertainty in neurologic disease, which appears in the December 2025 Continuum issue on neuropalliative care. Welcome to the podcast, and please introduce yourself to our audience.
Dr Holloway: Hi, Casey, and thank you. Again, my name is Bob Holloway. I'm a clinician and neurologist up in Rochester, New York, and I've been doing both neurology and palliative care for many years.
Dr Albin: Well, that's fantastic. And I really wanted to emphasize how much I really enjoyed reading this article. I know that we're going to get into some of the pearls that you offer, but I really want to tell the listeners, like, this is a great one to read because not only does it have sort of a philosophical take, but you also really provide some pragmatic tips of how we can help our patients manage this prognostic uncertainty. But maybe just tell us a little bit, what is prognostic uncertainty?
Dr Holloway: Yes, thank you. Well, I think everyone has a sense of what prognostic uncertainty is. And it's just the uncertain futures that we as clinicians and our patients face. And I would just say that a way to summarize it is just, how do we manage the "not yet" of neurologic illness?
Dr Albin: I love that. In neurologic illness, there is so much "not yet" and there are so many unknowns. And what I thought was really helpful about your article is you kind of give us three buckets in which we can think about the different types of uncertainty our patients are facing. What are those?
Dr Holloway: This is, I think, an area that really is of interest to me, thinking about how to organize the prognostic "not yet" or that landscape. And one way I've tried to simplify it is to think about it as data-centered. And that's the world that we mostly live in as neurologists. That's the probability distributions. We also have kind of system-level uncertainties, and that's the uncertainties that our health system affords for our patients. And then we have, also, the patient-centered uncertainties and the uncertainties that those two prior categories cause for our patients. And that's a big uncertainty that we often don't address.
Dr Albin: In reading the article, I was really struck by, we spend a lot of time thinking about data uncertainty. Can we get population-based research? Can we sort of look at prognostication scoring? I live in the ICU, and so we think a lot about these, like, scoring metrics and putting patients into buckets and helping us derive their care based on where their severity index is. And I'm sure that is true in many of the divisions of neurology. But what I did not really appreciate---and I thought you did a really fantastic job of kind of drawing our attention to---is there's a lot of system-centered uncertainty. Can you give us a little bit of examples, like, what is system-based uncertainty?
Dr Holloway: I think system-level uncertainties just encompass the practical information gaps that may arise during our healthcare encounter. And a lot of, I think, the uncertainty that our patients face and families, they actually describe it as they feel captive by the uncertainty. And it's just the unknowns, not just what affords from the actual information about the disease and its prognosis in the future, but actually the level of the system, like, who's going to take care of them? How do you manage arranging for nurses to come into the home or all those practical-level uncertainties that the system provides that sometimes we don't do a good job of road-mapping for patients.
Dr Albin: Absolutely. Because I feel like we have a little bit of a gap in that often as physicians. Like, the family asks, what will hospice at home look like? Well, you know, that's a question for case management. I think they'll come in and they'll tell you. But it strikes me that that's a real gap of my being able to walk patients through. Will they get home health care? Will they have transportation set up? Will there be a nurse who comes in to check? How often are they available? What's the cost going to be? All of these practical aspects of dealing with an illness that are beyond sort of our scope of knowledge, but probably have a huge practical impact to the patient.
Dr Holloway: Without question, every encounter patients wonder about, that kind of future wish landscape that we- all our future-oriented desires and hopes. And so much of that is the practical aspects of our health system, which is often fragmented, kind of unknown, uncertain. And that's a huge source of uncertainty for our patients and families. And then that leads to many other uncertainties that we need to address.
Dr Albin: Absolutely. I think another one that we, again, maybe don't spend quite as much time thinking about is this patient-level uncertainty. What's going on there?
Dr Holloway: Yeah. So, I think patient-level uncertainty is that uncertainty that they experience when confronted with the two other types of uncertainty: the actual data-centered uncertainty and the system-level uncertainty. And that's that, kind of, very huge kind of uncertainty about what it means for them and their family and their future futures. And that's a source of huge stress and anxiety, and often frankly bordering on dread and fear for our patients and families. That actually gets into very levels of uncertainty that I would call maybe over even in the existential realm. Patient-level uncertainty in the actual existential questions or the fear and the dread or the kind of just unnerving aspect of it is actually even more important to patients than the scientific or data-centered uncertainty that we focus most of our attention on.
Dr Albin: Yeah, I think this is, to me, was getting towards that, like, what does the patient care about and how are they coping with what is in many times a really dramatic shift in their life expectancy or morbidity expectations and this sort of radical renegotiation about what it means to have a neurologic illness? And how does that shift their thinking about who they are and their priorities in the world? Is that right?
Dr Holloway: One thousand percent, and in fact, I will say---and I think is one of the main take home messages is that, you know, managing prognostic certainty is not an end in itself. It really is to help patients and families adaptively cope to their new and often harsh new reality, that we could help them adapt to their new normal. I think that is one of our main tasks as neurologists in our care teams is to help patients find and ultimately maybe achieve existential or spiritual or well-being even in their new health states. You know, that you certainly often see in the intensive care unit, but we often always see in the outpatient realm as well, and all our other diseases.
Dr Albin: I think that's really hard to do. I think those conversations are incredibly difficult and trying to navigate where patients want to be, what would bring meaning, what would bring value. I think many of us struggle to have these pretty real and intense conversations with families about what really is important. And one of the things I really liked about this article is you kind of walk us through some steps that we as clinicians can take to get a little bit more comfortable. Maybe just walk us through, what are some of the things that you have found most helpful in trying to get families and patients to open up about what brings them meaning? How are they navigating this new, really uncertain time in their life?
Dr Holloway: Yeah, so I do kind of have a ten-point recommendations of how to help cultivate a more integrated awareness of an uncertain future. I mean, I think the most important thing is actually just recognizing that embracing uncertainty as an amazingly remarkable cognitive tool. I mean, let's face it, uncertainty, when it happens with neurologic illness and disease, is often fearful. It's scary. It kind of changes our world. But on the flip side of it, it's a remarkable cognitive tool that actually can help us find new ways and new paths and new creativity. And I think we can use that kind of opposites to help our patients find new meaning in very difficult situations. So, thinking about uncertainty, kind of being courageous, leaning into it and recognizing that it does create anxieties and fear, but it also can kind of help create new solutions and new ideas to help people navigate.
Dr Albin: I was hoping that maybe you could give us an example of, like, how would you do that? If a patient comes in and they're dealing with, you know, a new diagnosis and they're navigating this new uncertainty, what are some of the things that you ask to help them reframe that, to kind of take some of the good about that uncertainty? How do you navigate that?
Dr Holloway: One of the other recommendations is actually just resetting the timeline and expectations for these conversations. That it shouldn't be expected that patients should accept their harsh new reality immediately, that it takes time in a trusted environment. And that there's this, like, oscillating nature of hopes and fears and dread, and you've just got to work with them over time. And with time, and once you understand who the patient and family are and understand where they find meaning and where they find, actually, joy in their life, or what actually brings them meaning, you can start recasting their futures into credible narratives in their kind of future landscape in ways that I think can help them enter into their new realities within the, you know, framework of disease management that you can offer them within your healthcare team or your healthcare system or wherever you are in the world and the available resources that you have to offer patients and families.
Dr Albin: So, this sounds like a lot to me like active listening and really trying to get to know what is important to the family, what is important to the patient. And I guess probably just creating that space even in that busy clinical environment. Do I have that right?
Dr Holloway: You can absolutely do that, right. You know, and honestly, active listening, we are challenged in our busy healthcare system to do this, but I think with the right listening skills and the appropriate ways of paying attention, you can definitely illuminate these possible, kind of future-oriented worlds for patients and help them navigate those new terrains with them. Frankly, I think that's a real new space for us in neurology. We don't think about and train how to create credible narratives for patients and families. We do it on the fly, but I think there's so much more work to do. How do you actually keep, you know, that best-case, worst-case, most likely credible narratives for patients that can help them adapt to their new realities and support them on their new journeys?
Dr Albin: I love that best-case, worst-case, most likely case. I find that framework really helpful. But you talk in your article, it's not just about using that best case or worst case or most likely, but it's actually building some forecasting into that and having some real data to kind of support what you're saying. And there's a lot of growth towards actually becoming good as a medical forecaster. Can you describe a little bit, what did you mean by that?
Dr Holloway: You're absolutely right. I think, actually, one of the skillsets of becoming and managing prognostic uncertainty is actually becoming a skilled medical forecaster. And it's a really tall order. So, we've got to be both good medical forecasters as well as helping patients adaptively cope to their new reality. But the good medical forecasting is actually now going more quantitative in thinking about the data that's available to help think about the important outcomes for patients and families and then predicting what their probabilities are so you can shape those futures around. So, yes, we do have to have an open mindset. We do have to actually look at the data that's available and actually think about, what are those long-term probabilities and outcomes? And we can be honest about those and even communicate them with families. But it's a really good skill set to have.
Dr Albin: Yeah. This to me was a little bit about, how do you bring in the data knowledge that we try to get over time as we develop our expertise? You're developing not just a reliance on population-based data, but in my experience, I have seen this. And that sort of ability to kind of look at the patient in front of you, think about the big picture, but also a little bit about their unique medical comorbidities or prior life experiences. So, some of that database knowledge, and then bringing in and getting to know what is important to the patient. And so, sort of marrying that data-centric/patient-centric mindset.
Dr Holloway: I love it. I guess the other way of saying that, too, is we need to think with precision, but communicate in narratives. And it's okay to gently put more precise estimates on our probability predictions with patients and families, what we think is the most likely case, best and worst case. Because patients and families want us to be more precise. We often shy away from it, but- so, it's okay to think in precisions, but we've got to put those in narratives in the most likely, best-, and worst-case scenarios. And don't be afraid if you think in terms of ninety percents, ten percents, fifty percents; most patients and families don't mind that. And what they're telling us is they actually want to hear that, if you are comfortable talking in those terms.
Dr Albin: Yeah, absolutely. And giving a sense of the humility to say, like, this is my best guess based on medical data and my experience, I would say, but again, none of us have a crystal ball. And I do think families, as long as you're sort of couching your expectations into the sort of imperfect, but I'm doing my best, really appreciate that.
Dr Holloway: They totally do all the time. Just say, I simply don't know for certain, but these are my best estimates. That's a good way of just phrasing that.
Dr Albin: Yeah. So powerful. I don't know for certain. And then I wanted to just kind of close out, because there's this one term that you use that I thought was so interesting. And I wanted you to kind of tell our listeners a little bit about what you mean here, which is that, when you're actively open-minded, you're using this, quote, "dragonfly eyes." What do you mean by that?
Dr Holloway: So, the dragonfly eyes, as you know, they can look at three sixty around them and they just, they move in all directions. Being actively open minded, I guess the biggest example I would say is, I don't like the term prognostic discordance, which means that there's a difference of subjective estimates of prognosis between patients and families. Being openly minded is actually embracing the potential information that the family has about prognosis and incorporating that into your estimates. So, I wouldn't say it's discordances, per se; I think being really actively open-minded is taking that all in and utilizing that as, you know what, they know more than you do about the patient and their loved ones, and they may have insights that can inform your best estimates of prognosis. So, the true dragonfly prognosticator actually is one who embraces and doesn't consider it discord, but considers it kind of new, useful information that I just need to weigh in so I can help the family in my best professional way in terms of developing a prognosis, whatever the condition may be.
Dr Albin: I can imagine this is just so challenging and something that takes a long time to sort of perfect all of this. I think you say right below that, you need a growth mindset to do this because it is hard, and it's going to take an active participation and an active desire to get better at these conversations with our families.
Dr Holloway: One thousand percent. You are so right that it takes time, effort, and not feeling like you're being challenged, but that actually you are including them in your entire body of knowledge, that you're just- it's part of all you're collecting. And even, I was on service last week, and I talked to residents and students about that very issue. It's like take their prognosis. And someone who came in, we thought CJB, very sad, tragic case, but we were thinking about what the future may look like and how do we actually work with the family who had very what we thought was unrealistic expectations. I said, well, no, this is not discordance. This is just useful information that we can take understand where they're coming from and incorporate that into the ways we want to build relationships, build trust, and over time we'll get to a point where we hopefully can work with them and have them have that fully integrated awareness of their future.
Dr Albin: Yeah, that's beautiful. It really is this ongoing negotiation that really requires so much listening, understanding, and then obviously information and expertise about the data that we're presenting and the likelihood outcome, recognizing that there's a lot of uncertainty in all of this. Which, you know, again, this is kind of a 360 talk. At every level there is uncertainty, and that's what makes it so hard.
Dr Holloway: Yeah, you're absolutely right. And actually, even in the article I kind of used the term radical uncertainty as that, no matter how resolvable all this uncertainty is, there will always still remain that radical element of our existence which we have to actually incorporate and be prepared for. And actually, not only of ourselves, but actually for patients and families and helping manage that. Using narratives and credible narratives and kind of ranges of possibilities is the best way to do that in a personalized way.
Dr Albin: Well, this has been a fantastic conversation, and I know that we are running a bit short on time. So, as we wrap up and you think about this topic, are there any key take-home messages that you hope our listeners will walk away with?
Dr Holloway: I think one main emphasis is that despite all the successes we feel we have in neurology, is that we all have to recognize that prognostic uncertainty is just going to increase in the future. But this is going to be for several reasons. One is that, just, the illness uncertainty of all of our great therapies are just going to be creating more uncertainty for the future. And precision medicine is paradoxical, and that actually it creates more uncertainty. So, I think we need to be prepared that we have to manage prognostic uncertainty better, because it's definitely going to increase. And two, it's what I said earlier, is that actually managing prognostic uncertainty is not an end to itself. It's actually helping patients and families adapt to their new and sometimes harsh new reality and actually help them to ultimately get to a place where maybe either their condition is neither dreaded, but actually they can accept it as their new reality and actually achieve some sort of existential well-being and existential health. I think that we have a lot more to emphasize in this area. And for far too long, we've focused on the certainty aspect of our field and not enough on the uncertainty in the world of medicine to help our patients and families.
Dr Albin: And gosh, isn't there just so much uncertainty? And I think this has been beautiful. So, thank you again for coming and sharing your expertise.
Dr Holloway: Thank you very much. It's been a pleasure.
Dr Albin: For all of our listeners out there, this is a truly fantastic article, and I would just like to direct you to going to read the cases because not only do the cases offer a little bit of practical advice, but there's one that's actually sort of a philosophical discussion about, what does it mean to be alive and confront death? There's some beautiful artwork that's featured as well. So this is just a really unique article, and I'm excited for our listeners to have a chance to check it out. So again, today I've been interviewing Dr Bob Holloway about his article on managing prognostic uncertainty in neurologic disease, which appears in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues.
Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Pediatric neuropalliative medicine is an emerging area of subspecialty practice that emphasizes the human experience elements of serious neurologic illness. Child neurologists care daily for patients who can benefit from the communication strategies and management practices central to pediatric neuropalliative medicine, whether at the primary or subspecialty level.
In this episode, Gordon Smith, MD, FAAN, speaks with Lauren Treat, MD, author of the article "Neuropalliative Medicine in Pediatric Neurology" in the Continuum® December 2025 Neuropalliative Care issue.
Dr. Smith is a Continuum® Audio interviewer and a professor and chair of neurology at Kenneth and Dianne Wright Distinguished Chair in Clinical and Translational Research at Virginia Commonwealth University in Richmond, Virginia.
Dr. Treat is an associate professor in the divisions of child neurology and palliative medicine at the University of Colorado School of Medicine in Aurora, Colorado.
Additional Resources
Read the article: Neuropalliative Medicine in Pediatric Neurology
Subscribe to Continuum®: shop.lww.com/Continuum
Earn CME (available only to AAN members): continpub.com/AudioCME
Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud
More about the American Academy of Neurology: aan.com
Social Media
facebook.com/continuumcme
@ContinuumAAN
Host: @gordonsmithMD
Full episode transcript available here
Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast.
Dr Smith: This is Gordon Smith. Today I've got the great pleasure of interviewing my good friend Dr Lauren Treat about her article on neuropalliative medicine in pediatric neurology practice. This article appears in the December 2025 Continuum issue on neuropalliative care. Lauren, welcome to the Continuum podcast, and maybe you can introduce yourself to our listeners.
Dr Treat: Such a delight to be here, Gordon. Thank you. I am a pediatric neurologist and palliative medicine doctor at the University of Colorado, Children's Hospital Colorado, and I am practicing in both areas. I do general child neurology, and I also run a pediatric neuropalliative medicine clinic. So, I'm happy to be here to talk about it.
Dr Smith: And, truth in advertising, I tried very hard to get Dr Treat to move to VC to work with me. And I haven't given up yet. I'm looking forward to the conversation. And Lauren, I wonder- one, I'm really excited about this issue, by the way. This is the second podcast I've done. And I'd like to ask the same question I asked of David Oliver, who's amazing. What a great article and conversation we had. And that question is, can you define palliative care? I think a lot of people think of it as, like, end-of-life care or things like that. And is the definition a little different in the pediatric space than it is in the adult space?
Dr Treat: Such a great place to start, Gordon. I absolutely think that there are nuances that are very important in pediatrics. And we especially acknowledge in pediatrics that there is a very longitudinal component of this. And even moreso, I think, then in adult neuropalliative medicine, in pediatrics, we are seeing people=even prenatally or early in their first hours and days of life, and walking with them on a journey that might last days or weeks, but might last years or decades. And so, there is this sense that we are going to come alongside them and be part of the ups and the downs. So yes, neuropalliative medicine is a kind of medicine that is a very natural partner to where neurology is in its current field. We're doing a lot of exciting things with modifying diseases, diagnosing things early, and we have a very high reliance on the things that we can measure in medicine. And not all things can be measured that are worthwhile about one's quality of life. A family very poignantly told me very recently, making sure someone stays alive is different from making sure they have a life. And that's what neuropalliative medicine is about.
Dr Smith: Well, great summary, and I definitely want to follow up on several aspects of that, but there's one point I was really curious about as I've been thinking about this, you know, these are really exciting times and neurology in general and in child neurology in particular. And we've got all of these exciting new therapies. And as you know, I'm a neuromuscular person, so it's hard not to think back on SMA and not be super excited. And so, I wonder about the impact of these positive developments on the practice of neuropalliative care in kids. You know, I'm just thinking, you know, you mentioned it's a journey with ups and downs. And I wonder, the complexity of that must be really interesting. And I bet your job looks different now than it did seven or eight years ago.
Dr Treat: That's absolutely true. I will self-reference here one of the figures in the paper. Figure 2 in my section is about those trajectories, about how these journeys can have lots of ups and downs and whether this person had a normal health status to begin with or whether they started out life with a lot of challenges. Those ups and downs inherently involve a lot of uncertainty. And that's where palliative medicine shines. Not because we have the answer---everyone would love for us to have the answer---but because we consider ourselves uncertainty specialists in the way that we have to figure out what do we know, what can we ground ourselves in, and how can we continue to move forward even if we don't have all the answers? That is a particular aspect of neurology that is incredibly challenging for families and clinicians, and it can't stand as a barrier to moving forward and trying to figure out what's best for this child, what's best for this family. What do we know to be true about them as people, and how can we integrate that with all of the quantitative measures that we know and love in neurology?
Dr Smith: So, I love the comment about prognostication, and this really ties into positive uncertainty or negative undercertainty in terms of therapeutic development. I wonder if you can talk a little bit about your approach to prognostication, particularly in a highly fluid situation. And are there pearls and pitfalls that our listeners should consider when they're discussing prognosis for children, particularly maybe young children who have severe neurological problems?
Dr Treat: It's such a pivotal issue, a central issue, to child neurology practice. Again, because we are often meeting people very, very early on in their journey---earlier than we ever have before, sometimes, because of this opportunity to have a diagnosis, you know, prenatally or genetically or whatever else it is---sometimes we are seeing the very early signs of something as compared to previously where we wouldn't have a diagnosis until something was in its more kind of full-blown state. This idea of having a spectrum and giving people the range of possible outcomes is absolutely still what we need to do. However, we need to add on another skill on top of that in helping people anchor into what feels like the most likely situation and what the milestones are going to be in the near future, about how we're going to walk this journey and what we'll be on the lookout for that will help us branch into those different areas of the map down the road.
Dr Smith: So, I wonder if we can go back to the framework you mentioned, two answers ago, I think? You and the article, you know, provide four different types of situations kind of based on temporal progression. I wonder if maybe the best way of approaching is to give an example and how that impacts your thoughts of how you manage a particular situation.
Dr Treat: Absolutely. So, this figure in particular is helpful in multiple ways. One is to just give a visual of what these disease trajectories are doing, because we're doing that when and we take a history from a patient. But actually, to put it into an external visual for yourself, for your team, but also perhaps for the family can be really powerful. It helps you contextualize the episode of care in which you're meeting the family right now. And it also helps, sometimes, provide some sense of alignment or point out some discrepancies about how you're viewing that child's health and quality of life as compared to how the family might be viewing it. And so, if you say, you know, it sounds like during those five years before we met, you were up here, and now we find ourselves down here, and we're kind of in the middle of the range of where I've seen this person's health status be. Do I have that right? Families feel really seen when you do that and when you can get it accurately. And it also invites a dialogue between the two parties to be able to say, well, maybe I would adjust this. I think we had good health or good quality of life in this season. But you're right, it's getting harder. It's kind of that "show, don't tell" approach of bringing together all the facts to put together the relative position of where we are now in the context of everything they've been through.
Dr Smith: You know, I wonder if you could talk a little bit more about the differences between palliative care and adult patients and in children?
Dr Treat: Absolutely. One of the key features in pediatrics is this kind of overriding sense of an out-of-order event in the family's life. Children are not supposed to have illness. Children are not supposed to have disability. Children are not supposed to die before their parents. And that layer of tragedy is incredibly heavy and pervasive. It's not every encounter that you have in child neurology, but it does kind of permeate some of the conversations that neurologists have with their patients, especially patients who have serious neurological disease. So that could be things like epileptic encephalopathies, birth injuries, other traumatic brain injuries down the line. In the paper, I'd go through many different categories of the types of conditions that are eligible for pediatric neuropalliative medicine, that kind of support. When we think about that layer of tragedy in the relation to where we're meeting these families, they deserve extra support, not just to think about the medicines and the treatments, but also, what can we hope for? How can we give this child the best possible life in whatever circumstance that they're in? How can we show up in whatever medical decision-making circumstances present themselves to us and feel like we've done right by this child? It's a complex task, and pediatric neural palliative medicine is evolving to be able to be in those spaces with families in a very meaningful way.
Dr Smith: So, of course, one of the differences is the, you know, very important role of parents in the situation, right? Obviously, parents are involved in adult palliative care issues and family is very important. But I wonder if you can talk about specific considerations given the parent-child relationship?
Dr Treat: So, pediatric neuropalliative medicine really helps facilitate discussions not just about, again, those things that we have data on, but also about what is meaningful and foundational for those families. What's possible at home, what's possible in the community. In pediatrics, parents are making decisions on behalf of their child, often as a dyad, and I don't think this gets enough attention. We know from adult literature that making decisions on behalf of someone else is different from making decisions on behalf of oneself. We call this proxy decision-making. And proxies are more likely to be conservative on behalf of someone else than they are on behalf of themselves, and they're also more likely to overestimate the tolerability of a medical intervention. So, they might say, I wouldn't want this, or, I wouldn't accept this risk on behalf of myself, or, I don't think I'd want to have to persevere through something, but on behalf of this other person, I think they can do it or I will help them through it or something else like this, or, I can't accept the risk on behalf of them. So that's not good or bad. That's just different about making a decision on behalf of oneself as compared to making a decision on behalf of someone else. When there's two people trying to be proxies on behalf of a third person, on behalf of a child, that's a really, really complex task, and it deserves support. And so, pediatric neural palliative medicine can function, then, as this neutral space, as this kind of almost coaching opportunity alongside the other medical doctors to give parents an opportunity when their minds are calm---not in the heat of the moment---to talk about how they see their child, how they've shown up themselves, what they've seen go well, what they've struggled with. And how,, then we can feel prepared for future decision making times, future high-stress encounters, about what will be important to ground them in those moments, even though we can't predict fully what those circumstances might be.
Dr Smith: It sounds, you know, from talking to you and having read the article, that these sorts of issues evolve over time, right? And you have commented on this already from your very first answer. And you do describe a framework for how parents think---their mental model, I guess---of, you know, a child with a serious illness. And this sounds like appreciation of that's really important in providing care. Maybe you can talk us through that topic?
Dr Treat: I refer to this concept of prognostic awareness in all of the conversations that we have with families. So, what I mean by prognostic awareness is the degree of insight that an individual has about what's currently happening with their child and what may happen in the future regarding the disease and/or the complications. And when we meet people early on in their journey, often their prognostic awareness, that sense of insight about what's going on, can be limited because it requires lived experience to build. Oftentimes time is a factor in that, we gain more lived experience over time, but it's not just time that goes into building that. It's often having a child who has a complication. Sometimes it's experiencing a hospitalization. That transfer from a cognitive understanding of what's going on, from a lived experience about what's going on, really amplifies that prognostic awareness, and it changes season by season in terms of what that family is going through and what they're willing to tolerate.
Dr Smith: You introduced a new term for me, which is hyper-capableism. Can you talk about that? I found that really interesting and, you know, it reminds me a lot of the epiphanies that we've had about coma and coma prognosis. So, what's hyper-capableism?
Dr Treat: Yes. In neurology, we have to be very aware of our views on ableism, on understanding how we prognosticate in relation to what we value about our abilities. And hyper-capableism refers to someone who feels very competent both cognitively and from a motor standpoint and fosters that sense of value around those two aspects to a high degree. I'm referencing that in the article with regard to medicine, because medicine, the rigors of training, the rigors of practice, require that someone has mental and motor fortitude. That neurology practice and medical practice in general can breed this attitude around the value of skills in both of those areas. And we have to be careful in order to give our patients and families the best care, to not overly project our values and our sense of what's good and bad in the world regarding ableism. Impairments can look different in different social contexts. And when the social context doesn't support an impairment, that's where people struggle. That's where people have stigma. And I think there's a lot of work that we can do in society at large to help improve accommodations for impairment so that we have less ableism in society.
Dr Smith: Another term that I found really interesting kind of going back to parents is the "good parent identity." Maybe you can talk about that?
Dr Treat: Good parent identity, good parent narrative, is something that is inherent to the journey when you're trying to take care of and make decisions on behalf of a child. And whether you're in a medical context or outside of a medical context, all parents have this either explicit or implicit sense of themselves about what it means to do right by their child. This comes up very poignantly in complex medical conditions because there are so many narratives about what parents ought to do on behalf of their child, and some of those roles can be in tension with one another. It's a whole lot of verbs that often fall under that identity. It's about being able to love and support and take good care of and make good decisions on behalf of someone. But it's also about protecting them from harm and treating their pain and being able to respond to them and know their cues and know these details about them. And you can't, sometimes, do multiple of those things at once. You can't give them as much safety and health as possible and also protect them from pain and suffering when they have a serious illness, when they need care in the hospital that might require a treatment that might be invasive or burdensome to them. And so, trying to be a good parent in the face of not being able to fulfill all those different verbs or ideas about what a good parent might do is a big task. And it can help to make it an explicit part of the conversation about what that family feels like their good parent roles might be in a particular situation.
Dr Smith: I want to shift a little bit, Lauren, that's a really great answer. And just, you know, listening to you, your language and your tongue is incredibly positive, which is exciting. But, you know, you have talked about up and downs, and I wanted you to comment on a quote. I actually wrote it down, I'm going to read it to you, because you mentioned this early on in your article: "the heavy emotional and psychological impacts of bearing witness to suffering as a child neurologist." I think all of us, no matter how excited we are about all the therapeutic development, see patients who are suffering. And it's hard when it's a child and you're seeing a family. I wonder if you could talk a little bit about that comment and how you balance that. You're clearly- you're energized in your career, but you do have to bear witness to suffering.
Dr Treat: You're right. Child neurologists do incredible work, it's an incredible, exciting field, and there are a lot of challenges that we see people face. And we see it impacts their lives in really intense ways over the course of time. We bear witness to marriages that fall apart. We bear witness to families that lose jobs or have to transition big pieces of their identity in order to care for their children. And that impacts us. And we hold the collective weight of the things that we are trying to improve but sometimes feel less efficacious than we hoped that we could around some of these aspects of people's lives. And so, pediatric neuropalliative medicine is also about supporting colleagues and being able to talk to colleagues about how the care of the patients and the really real effort that we exert on their behalf and the caring that we have in our hearts for them, how that matters. Even if the outcome doesn't change, it's something that matters for our work and for our connections with these families. It's really important.
Dr Smith: I wonder, maybe we can end by learning a little bit about your journey? And maybe this is your opportunity to- I know we have students and residents who listen to us, and junior faculty. I think neuropalliative care is obviously an important issue. There's a whole Continuum issue on it---no pun intended---but what was your journey, and maybe what's your pitch?
Dr Treat: I'm just going to give a little bit of a snippet from a poem by Andrea Gibson, who's a poet, that I think speaks really clearly to this. They say a difficult life is not less worth living than a gentle one. Joy is simply easier to carry than sorrow. I think that sums these things up really well, that we find a lot of meaning in the work that we do. And it's not that it's easier or harder, it's just that these things all matter. I'm going to speak now, Gordon, to your question about how I got to my journey. When I went into pediatrics and then neuro in my training, I have always loved the brain. It's always been so crucial to what I wanted to do and how I wanted to be in the world. And when I was in my training, I saw that a lot of the really impactful conversations that we were having felt like we left something out. It felt like we couldn't talk about some of the anticipated struggles that we would anticipate on a human level. We could talk about the rate and the volume of the G tube, but we couldn't talk about how this was going to impact a mother's sense of being able to nourish and bond and care for their child because we didn't have answers for those things. And as I went on in my journey, I realized that even if we don't have answers, it's still important for us to acknowledge those things and talk about them and be there for our patients in those conversations.
Dr Smith: Well, Lauren, what a great way to end, and what a wonderful conversation, and what a great article. Congratulations and thank you.
Dr Treat: Thank you, Gordon. It was a pleasure to be here.
Dr Smith: Again today, I've been interviewing Dr Lauren Treat about her really great article on neuropalliative medicine in pediatric neurology practice. This article appears in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this issue and other issues. And thanks again to you, our listeners, for joining us today.
Dr Monteith: This is Dr Teshamae Monteith, associate editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Patients with Parkinson disease and other movement disorders have significant palliative care needs that are poorly met under traditional models of care. Clinical trials demonstrate that specialist palliative care can improve many patient and family outcomes.
In this episode, Aaron Berkowitz, MD, PhD, FAAN, speaks with Benzi M. Kluger, MD, MS, FAAN, author of the article "Neuropalliative Care in Movement Disorders" in the Continuum® December 2025 Neuropalliative Care issue.
Dr. Berkowitz is a Continuum® Audio interviewer and a professor of neurology at the University of California San Francisco in the Department of Neurology in San Francisco, California.
Dr. Kluger is the Julius, Helen, and Robert Fine Distinguished Professor of Neurology in the Departments of Neurology and Medicine (Palliative Care) at the University of Rochester in Rochester, New York.
Additional Resources
Read the article: Neuropalliative Care in Movement Disorders
Subscribe to Continuum®: shop.lww.com/Continuum
Earn CME (available only to AAN members): continpub.com/AudioCME
Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud
More about the American Academy of Neurology: aan.com
Social Media
facebook.com/continuumcme
@ContinuumAAN
Host: @AaronLBerkowitz
Guest: @BenziKluger
Full episode transcript available here
Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast.
Dr Berkowitz: This is Dr Aaron Berkowitz, and today I'm interviewing Dr Benzi Kluger about his article on neuropalliative care in Parkinson disease and related movement disorders, which is found in the December 2025 Continuum issue on neuropalliative care. Welcome to the podcast, Dr Kluger, and could you please introduce yourself to our audience?
Dr Kluger: I'm Benzi Kluger. I'm a professor of neurology and palliative medicine at the University of Rochester. I'm the chief of our neuropalliative care service, I'm the director of our Palliative Care Research Center, and I'm also the founding president of the International Neuropalliative Care Society.
Dr Berkowitz: Wow, that is a large number of hats that you wear in a very important area of palliative care. So, your article is a fantastic article that covers a lot of concepts in palliative care that I myself was not familiar with and really applies them in a very nuanced way to patients with Parkinson's disease and related disorders. So, I'm looking forward to learning from you today to discuss some of the concepts you talk about in the article and how you apply them in your daily practice of palliative care in this particular patient population. So, one of the key points in your article is that we're often so focused on treating the motor symptoms of Parkinson's disease and other degenerative movement disorders that we are often at risk of underdiagnosing and undertreating the nonmotor symptoms, which in some cases, as you mentioned in the article, are more disabling to the patient than the motor symptoms that we tend to focus on. So, from a palliative care perspective, what are some of the nonmotor symptoms that you find tend to be underdiagnosed and undertreated in this patient population?
Dr Kluger: The literature suggests---and we've replicated it, actually, Lisa Schulman published a paper twenty-five years ago and the data is almost exactly the same when it comes to things like depression, pain, fatigue, constipation, sleep---that you miss it about 50% of the time. And there's a number of reasons for that. One is that these are subjects that people don't always like to talk about. People don't like talking about depression. People don't like talking about poop and constipation. And I think there are things that neither the patient or the caregiver nor the physician are necessarily comfortable with. And they're also sometimes confusing of, which doctor should I talk to this about? Should I talk to my primary care doctor, should I talk to my neurologist? And so I think the key here is really having a checklist and being proactive about it. In the article, I suggest a template or previsit questionnaire that you can use, but I think it's just about being automatic about it. And it just takes the burden off of the patient and the family to bring them up and letting them know that this is a safe space and this is the right space to talk about these symptoms.
Dr Berkowitz: That's very helpful to know. So, having some type of checklist or template just so we go all through them and, as you said, it sort of destigmatizes, just, this is the list of things, and I'm going to just ask about all of them. So we check in on those particular symptoms, whether they're present or not. Are there any particular symptoms that jump out to you as ones that tend to be missed---either because we don't ask about them or patients are less comfortable mentioning them---that in your practice, when you've elicited them, have allowed for particular intervention that's really improved the quality of life for patients in this group?
Dr Kluger: Yeah, I'll mention a few that I think come up and are very pertinent. One is mood. And, to use depression---but we could also use anxiety as an example---again, these are topics that people don't always want to talk about. And I think it's important---we may get to this a little bit more later---is being careful to distinguish between depression and grief, sadness, normal worry, frustration. A lot of times the way I'll ask that when I'm talking to a patient is, you know, I hear you're using the word depressed. I want to make sure. does this feel to you like normal sadness given that you have an illness that sucks, or does this really feel like it's above and beyond that and you feel like you'd need a little extra help to get your emotions under control?
The second one, which is kind of related, is other behavioral symptoms, including PD psychosis and hallucinations. And there, I think, the thing is that people are quite frankly afraid that they're losing their mind or going insane. So, I think that's another critical one. And then one that, you know, it's kind of a low-hanging fruit but people don't want to talk about, is constipation. And when we did our large randomized control trial of palliative care, our single biggest effect size was actually that we did a better job of treating constipation than usual care. And I think the only trick there is that we asked about it.
Dr Berkowitz: I see. So, do you then as part of your routine practice and seeing these patients with Parkinson's disease in particular, you have a particular checklist you go through during the appointment or, as you mentioned, you- one could do it before the appointment. But you tend to go through this in the visit, and is there any palliative care wisdom you have for us, those who are not trained in palliative care, to making sure we really elicit these symptoms in an effective way and how much they're bothering the patient?
Dr Kluger: Two things that I've seen work---and we've done a lot of implementation studies. One is that, if it works for your practice, having patients fill out a questionnaire or survey in advance. And I think one of the highest-yield things there too is for blank lines to allow patients to write in what their top three problems are. And I've found when we've used it, and I think other people have found, that it's a huge time saver. People hand them the form, they look to see what's at checked a yes or what's checked as high, and then that becomes the agenda for the visit. The other thing that I think works equally well is just having a template, and at this point its just kind of, like, hard-wired into my neurons that, you know, no matter what we talked about in the HPI, I'll always ask about sleep and mood and bowel and bladder and pain to make sure that I don't miss those things.
Dr Berkowitz: You mentioned in your article that palliative care needs in patients with Parkinson's disease really differ over the course of the illness and may be different at the time the initial diagnosis is given versus as the disease progresses versus the latest, most advanced stages of the disease. Can you talk a little bit more about how your approach to these patients changes over time from a palliative care perspective?
Dr Kluger: Yes. And I'll also add, I think some of this is going to be more relevant to our listeners than to me. I'm now almost entirely in a neuropalliative care clinic, but for early-stage illness, it's really primary palliative care. And just to reinforce, this is palliative care that's provided by neurologists and primary care doctors, not specialist palliative care. I think that mindset's particularly important around the time of diagnosis. One of the things that, for me, was most eye-opening when we were doing qualitative interviews and studies was how devastating the diagnosis of Parkinson's disease was for patients and their families. And that was not something that I really anticipated. I think, like a lot of people and a lot of movement disorder doctors, I kind of thought of Parkinson's disease as a relatively good-news diagnosis. And that was often the way I pitched it, and we talked about Sinemet and DBS and exercise and all these things, but I have a relativity bias. And that bias is, I know that Parkinson's is better than PSP or MSA or brain cancer. But for the individual getting that diagnosis, that's it's not good news because their relativity bias is, I didn't have Parkinson's before and now I do. And for the rest of my life I'm going to have Parkinson's. And for the rest of my life, there may be things that I can do today that I won't be able to do tomorrow or next week. And so that was… yeah. And I think it really changed my practice and was pretty eye-opening for me.
In the article, I mentioned the SPIKES (S-P-I-K-E-S) protocol for talking about serious conversations or talking about bad news. But I think one of the keys there for the time of diagnosis is asking people about their perceptions of Parkinson's. And part of that's also asking them what they know and what they're worried about. And you may be surprised that when you ask somebody about Parkinson's, you know, sometimes they may say it was good news. It's been three years, I've been trying to find an answer, and I feel like I've been being blown off. And sometimes you might say, this is the thing I feared the most. My uncle died of Parkinson's in a nursing home. And I also find that more often than not, even in end-of-life, that a lot of times the serious illness conversations I have, the facts that I have to present people, are better than their fears. And that's true at the time of diagnosis. But I think if we don't go into it and we don't ask people what they're feeling and what their perceptions are, then we miss this opportunity to support them. So that's the early stage. And in midstage, I think the, you know, the real keys there are to catch nonmotor symptoms early, to catch things like pain and depression and constipation before they become really bad or even lead to a hospital stay. And also starting to plant the seed and maybe doing some advanced care planning so that we are- people feel more prepared for the end stages of Parkinson's. And I think there, too, people ask about the future; when we tell them everyone's different or you don't have to worry about that now, that doesn't help an individual very much. So, oftentimes in the middle stages of the illness, people do want to know, am I going to go to a nursing home? How much longer is this going to be? You don't need a crystal ball, but if you can give people the best case, the worst case, the most likely case, that can be very helpful for life planning.
And then as we're getting to more advanced and endstage, the lens that I'm looking at people with really is, should we begin talking about hospice? And we know again, from data that as a system---not just neurologists, but as a system---we're missing this all the time. And that if you have Parkinson's disease, you're about 50% chance of dying in a hospital, which is not where people want to die. And so, when I see people with more advanced disease, I'm asking questions about weight loss, and are they sleeping more during the day, and is there an acceleration in their decline of function? So, not just asking about where they are, but what's the rate of decline so that I can give people months of hospice as opposed to either them dying in a hospital or just scrambling for hospice in the last few days of their life.
Dr Berkowitz: Another important palliative care concept you discussed in this article that was new to me is the concept of total pain, where you talk about aspects of pain beyond the physical and emotional pain we often think of when we hear the word pain. Can you talk a little bit about this concept of total pain, and then in particular how you apply it specifically when caring for patients with Parkinson's disease and related disorders?
Dr Kluger: Yeah, absolutely. In the article there's a figure, and this is a- one of the foundational concepts of palliative care is this idea of total pain. Which is that the pain of a serious illness, whether that be cancer or Parkinson's, is not simply physical. There's also emotional components. And that also goes beyond the psychiatric. So, that includes grief and worry and frustration, and it also includes loneliness. And I think with Parkinson's disease, actually, one of one of the quotes that really sticks with me from some of our qualitative interviews was a woman who talked about her Parkinson's as a "flamboyant illness" because her tremor and her dyskinesias were always coming out at inopportune times. And it wasn't something I thought about, but there's this cosmetic aspect of having a movement disorder. There's also a cosmetic aspect of drooling or of using a walker. And so, there is a social stigma associated with Parkinson's, and people also lose a lot of social capital. Part of that is that often times neighbors and friends and family don't feel comfortable being around that person anymore. They don't know what to say. And so, sometimes coaching or connecting them with a chaplain or a counselor can be helpful in maintaining those social networks. There's a social pain. There's a spiritual and existential pain.
And when I ask people a question, I ask almost everybody, is, what's the toughest part of this for you? A lot of times things fall into that bucket. And it's my loss of independence. I'm no longer able to do the things that bring me joy. I feel guilty that I'm going to be a burden to my family. My relationships are changing. So those are things that are essentially spiritual and existential. And then the last bucket, there are logistical things. And this can be lost driving and how do I get around, the cost of doctor visits, spending time with doctors, co-pays for medications; in the case of Parkinson's disease, the logistics of taking medication every two to three hours. So those all contribute to the total pain or the multiple dimensions of suffering. And that is something that I think about---in fact, in our assessment and plan, one of the things I like to mark out is sources of suffering. And that could be from any of those parts of the pie chart.
Dr Berkowitz: And how do you approach this at the bedside? So, there are different concepts here. Obviously, physical pain, everyone is familiar with probably the concept of emotional pain. But as you get out in these concentric circles into sort of spiritual, existential pain, how do you sort of start these discussions with patients to elicit some of these aspects of their suffering?
Dr Kluger: You know, the most common question I ask is, what's the toughest part of this for you? And very often that's going to lead into these existential and spiritual issues. I'll also ask people at the start of visits is, just tell me overall, big picture, how's your quality of life? Sometimes the answer is pretty good. Sometimes it sucks. Sometimes it's I have none. I know we're going to talk a little bit about joy later. But I'll also often times follow that up with, what do you enjoy or look forward to? And sometimes I get a response to that, and sometimes I get there's nothing in my life right now. But foundationally, I feel like those are all, you know, definitely spiritual and existential issues. And I'll ask people, too, where do you find meaning? What are your sources of support?
I know for different physicians, people have different comfort with this, but I do find it helpful also to ask people, are you spiritual or religious? Because that can sometimes open up a window to other means of coping. An example of that---I mean, not everybody is going to have access to a chaplain. Some people will. But oftentimes one of the things that I do is encourage people to reconnect with their spiritual community. And so, I've had some very heartwarming winds where somebody would say, you know what, I haven't been to church for a while. And people at churches or synagogues or mosques are often looking for opportunities to help. And so that I think is another, I think, really important message. But I think one of the- my favorite parts of my job is kind of opening up these bridges and opening up these connections. And helping people to recognize, I would kind of put it under a larger practice of grace, is that asking for help can be a gift to another person. And if you're strong enough to ask for help, you're giving, you know, sometimes a really tremendous gift to another individual. If somebody has a strong community that they're connected with, doesn't have to be religious. it could be that they were a high school sports coach, it could be that they were involved in a book club, it could be that they were DJ or ran a restaurant or who knows what. Those all can provide opportunities for bringing people together and bringing together community. And again, thinking about the total pain of having a neurologic illness like Parkinson's, that loss of community, that loss of connection, is one of the things that's most painful.
Dr Berkowitz: So, when people think about palliative care, they tend to think about pain and suffering and a lot of the topics we've been talking about. But you also talk about joy in your article, and you alluded to it a moment ago, working with your patients to find what brings them joy, opportunities for joy. As I was reading this, I was trying to imagine sitting across from a patient who has maybe just received the diagnosis of Parkinson's or is in a stage of the disease where, as you mentioned, they might be quite depressed, whether that's capital-D depression or sadness related to their loss of independence and other aspect. Sitting across from a patient who is suffering so much and has come maybe to a palliative care doctor such as yourself to alleviate suffering and have pain and other symptoms addressed, how do you begin a conversation about joy in that context and have the patient feel comfortable to open up? And how do you then use that conversation to help them improve their quality of life?
Dr Kluger: Yeah, that's a great question. And it's one that actually comes up every time I talk about joy because it can be daunting. And there certainly are situations where I don't bring it up. You know, if we are deep into a session about grief or we're talking about kind of an unexpected bad turn of events, there's times where it would be insensitive to try to push, you know, an agenda of joy or something like that. And yet I would say that particularly residents and students who work with me, you know, may be surprised at how often I do bring it up. And I would say it's probably 95% of the time or more where I am able to talk about joy. And as an example, you know, we might be talking about grief and loss and changes in independence. And then I would say, you know, I want to make sure that we have time to talk about this, and we'll connect you to our chaplain or counselors so that you can talk about and process your grief. And at the same time, I want to make sure that we don't lose sight that there are still opportunities for joy and love and meaning in your life. And I want to make sure that we make space and time to talk about those things too.
So, it's creating that balance. That's a transition that, even when you're on a very heavy subject---in fact, I would say maybe even particularly when you're getting into a heavy subject---that you can talk about joy and love and meaning. I gave a talk at the American Academy of Neurology a few years ago where I referred to them as weapons that you can use against some curable illnesses. One example is, my approach to chronic pain often centers around joy. So, I'll have somebody who comes in with back pain. My goal with that person is not for them to take Percocet four times a day to eliminate their back pain. When I talk to that person, I may find out that their grandson's soccer games and boxing class are the two most important things in their life. So maybe we take Percocet three or four times a week a half-hour before those activities so that you can get that joy back in your life. And so, we kind of use joy as a way and as a goal to reclaim those parts of your life that are most important to you. So, that's a pretty concrete example. Even for people nearing end of life, it could be giving people permission to eat more of their favorite food, often times ice creams, milkshakes---which is great, because we want people to gain weight at that point. Getting out into nature, even if they can't hike or do things the way they used to, that they might be able to go out with their family. Having simple touch, spending time together, really trying to prioritize what's most important. In the article, we talk about the total joy of life or the total enjoyment of living. But I like to be systematic about thinking about opportunities for living and make sure that we're just as systematic about thinking about what are the opportunities for joy as we are about thinking about the sources of suffering.
Dr Berkowitz: I'm sure I only sort of scratched the surface of palliative care in general, let alone specifically related to Parkinson's disease and other related disorders. For our listeners who may be interested in learning more about neuropalliative care specifically or getting a little more training in this, any recommendations?
Dr Kluger: Yeah, absolutely. Thanks for asking me that. There is a growing community of people interested in neuropalliative care, and so I would really encourage people who are passionate about this and want to get connected to this community to consider joining the International Neuropalliative Care Society. We're a young and growing community. I think you'll find a lot of like-minded individuals. And whether you're thinking about going into neuropalliative care as a specialty or doing a fellowship or just making it more a part of your practice, you'll find a lot of like-minded individuals. And then at the end of the article, there are some websites, but there are opportunities: for example, Vital Talk, the education palliative and end-of-life care neurology curriculum out of Northwestern, where people can dig deeper and kind of do their own mini-fellowship to try to bolster these skills.
Dr Berkowitz: Gives, certainly, me a lot to think about. I'm sure it gives our listeners a lot to think about as well in implementing some of the palliative care concepts you tell us about today and discuss in much more detail in your article as we see these patients and, hopefully, can refer them to talented expert colleagues like yourself in palliative care, but don't always have that opportunity. And as you said, there's always opportunities to be practicing palliative care, even though we're not palliative care specialists. So, I encourage all the listeners to read your article, which goes through these concepts and many more as well some sort of key points and strategies for implementing them as you gave us many examples today.
So again, today I've been interviewing Dr Benzi Kluger about his article on neuropalliative care in Parkinson disease and related movement disorders, which is found in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues, and thank you again to our listeners for joining us today.
Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.