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

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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.

Dementia is often a highly burdensome disease process for patients, their caregivers and families, and the community at large. Palliating symptoms and providing guidance surrounding advance care planning and prognostication are integral components of the management plan.

In this episode, Katie Grouse, MD, FAAN, speaks with Neal Weisbrod, MD, an author of the article "Neuropalliative Care in Dementia" in the Continuum® December 2025 Neuropalliative Care issue.

Dr. Grouse is a Continuum® Audio interviewer and a clinical assistant professor at the University of California San Francisco in San Francisco, California.

Dr. Weisbrod is a neurologist at Hartford Healthcare with the Ayer Neuroscience Institute in Mystic, Conneticut.

Additional Resources

Read the article: Neuropalliative Care in Dementia

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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 Grouse: This is Dr Katie Grouse. Today I'm interviewing Dr Neal Weisbrod about his article on neuropalliative care in dementia, which appears in the December 2025 Continuum issue on neuropalliative care. Welcome to the podcast, and please introduce yourself to our audience.

Dr Weisbrod: Thank you. I'm really excited to be here. I'm Neal Weisbrod. I'm a neurologist and palliative care physician currently working at Hartford Healthcare in Mystic, Connecticut.

Dr Grouse: To start, I'd like to ask why you think it's important that neurologists read your article?

Dr Weisbrod: The primary reason I think it's really important to read the article is because these are just really common problems that neurologists run into in clinical practice. So, Alzheimer disease and many other dementias are extremely common, and managing the burdensome symptoms and the complex discussions that we have to have with the patients and their families as they go through the course of dementia is something that is very common in clinical practice. And so my hope is that by reading this article, clinicians will pick up a few tools, a few new ideas for how to make these conversations easier and for how to help these patients get through the disease with a little bit less suffering.

Dr Grouse: I learned a lot from reading your article, and I really encourage our listeners to check it out. But I was curious what you feel that you discussing your article would come as the biggest surprise to our listeners?

Dr Weisbrod: So, I think that the most surprising thing a lot of people will see reading this article is the section on prognosis. A lot of times it seems families are counseled, when they're talking about the prognosis of Alzheimer disease, that it could be ten years or longer. But really, the data show that for many patients, the median prognosis is closer to three to eight years. And that is a little bit longer for Alzheimer disease than many other types of dementia, but also gets significantly shorter as patients get older. So, we're looking at a closer to three-year median prognosis for patients who are over eighty-five, whereas patients in their sixties are probably closer to the eight or nine-year median prognosis. And so I think that piece will hopefully help people give a little bit more accurate counseling about prognosis.

Dr Grouse: I'm glad you brought that up because I was wondering, why is it so important that we are careful to make sure that we're giving prognostic information for our patients and maybe even updating it as their clinical status changes?

Dr Weisbrod: I think first of all, it's a really common thing that patients and families are thinking about and worried about. They don't necessarily always seem to ask as much as they want to know. I think there's a lot of fear around that conversation, even though it's really important. And then there's also often tension between the family and caregivers tend to want to know more than patients do. I think that it really helps people plan for the future as well as possible to know what their future might be. And we have a lot of limitations in predicting the future, but using the best information we can, laying out what we think the likely range is, allows people to make a lot more clear plans for their future.

Dr Grouse: I'd imagine it's also pretty helpful for hospice referrals, too, having that data.

Dr Weisbrod: Yeah, definitely. And there's a lot of angst about when to refer patients who have dementia to hospice. The most important thing I think about when I'm making a hospice referral is that I don't have to be right. And I think it takes a lot of that concern off to just say, all I'm doing is making a connection, getting someone who's potentially interested in the hospice, who has a really advanced serious illness connected to a hospice agency. And then they can go through the full evaluation with the hospice and the hospice medical director and determine whether they're eligible. So, I think there are really helpful thresholds to think about that would be a good trigger. Like a patient who we think has advanced dementia, who has a hospitalization for pneumonia or a fracture of the hip or some other really serious acute medical condition, I think is a really good trigger to start to think about hospice. But most importantly, it's just the connection, and I tell the patients that upfront. I tell them that you're going to have a conversation and we'll decide whether you're a good fit, and if not, the hospice will usually just check in with you over time and decide when is the right time in the future.

Dr Grouse: That's really helpful. And I think just a really great reminder to our listeners about thinking about hospice sooner or at certain critical points in their patient care rather than waiting, maybe, before it's gone on too long and may be of less use later on. I was wondering, in your own clinical practice, what do you think is the most challenging aspect of providing care to patients with dementia?

Dr Weisbrod: I think this one's easy. I would say managing the time has to be the most difficult part. I think that taking care of patients who have dementia is time-consuming. There's a lot of different priorities that we have to manage the time around. How much time are we going to spend doing cognitive testing? How much time are we going to spend doing counseling? How much time are we going to spend making up a treatment plan and discussing medications? How much time are we going to spend on advanced care planning? And the way I try to combat that is really just trying to think about what I'm going to prioritize in a certain visit and not try to accomplish everything. I'll tell patients and their families, the next time you come in, we're going to have a conversation focusing on advanced care planning. Or, the next time you come in, we're going to sit down and try to talk through all the questions you have about what the future might hold. That way I in that visit, I don't feel like, oh, I have to do updated cognitive testing and I have to review all the next steps in medication, and that allows me to take it in more bite-sized chunks.

Dr Grouse: You made some of the great points, and specifically you mentioned advanced care planning. Your article makes a really strong case for the importance of advanced care planning, yet you definitely acknowledge the many barriers to initiating discussions that clinicians face. In your patients with dementia, can you walk us through how you integrate discussions about advanced care planning with your patients and their families?

Dr Weisbrod: Yeah, I think this is still something that is evolving in my practice, and I don't think there's any perfect way of doing it. I think there's a lot of right ways of doing it, and as long as we're thinking about it a lot and bringing it up periodically, that's probably the best. What I try to do, though, is after I discuss what I think is the most likely diagnosis with patients and their families, I try to have a fairly close follow-up visit after that. Allow them to digest that information, to often do a little bit of their own research, to talk about it as a family. And then when they come in for that next appointment, I try to at least lay some groundwork about advanced care planning, asking them what they've completed already, and then based on what they've already done to that point, talking to them about what I think the next step would be. If they have done nothing, usually it's just, hey, I really think you should start to think about who would be making decisions for you if you lose the ability to make your own decisions and counsel them about power of attorney paperwork and establishing a healthcare surrogate. When it's patients who have already done some of that initial prep, I think that it's really important to keep in mind it's a longitudinal discussion and you can take it in small pieces over time. Often that helps because you can really establish that rapport and that trust. And then I like to just keep checking in whenever there's major changes in the patient's health or condition, like admission to the hospital or transfer to an assisted living facility or memory care clinic. Those are good times to remember, hey, I really need to revisit this conversation.

Dr Grouse: It's probably good to also mention another really important point from your article, which was that impairment of decision-making in patients with dementia can actually start significantly even in the phase of mild cognitive impairment. Yet these patients will need to make many medical decisions with their neurologist as they go through this journey. How can we make sure our patients have capacity and make decisions appropriately regarding their care?

Dr Weisbrod: Yeah, I think that's a definite challenge of taking care of patients with cognitive disorders of any type, including those with stroke and multiple sclerosis, that have some cognitive impairment. In my opinion, the most important way to help manage that is to make sure when we are making important decisions about the future that we're having a deep exploration of the values and the reasoning behind that. And definitely teach back is the most helpful way that I use to explore those values and the logic behind patients' decisions. So, I think we have to have a really low threshold to move on to a formal evaluation of capacity; if there's any inconsistency between what the patient's saying now and what their families say they've said in the past, or if they're having struggled to come up with a really clear logic behind their decision, then I think we have to have a low threshold to move on to a formal evaluation of capacity. So, I think having the family involved, having other people who know the patient really well, usually helps identify some of those periods where it seems like the patient's not making the decision that really reflects their true wishes.

Dr Grouse: Now I wanted to switch gears a little bit and get into the management of neuropsychiatric symptoms, which you spend a lot of time on and I think a lot of neurologists find very challenging. What are some nonpharmacologic approaches that can help patients with significant neuropsychiatric symptoms?

Dr Weisbrod: I really like the DICE paradigm for coming up with nonpharmacologic approaches. The DICE paradigm is an acronym. The D is Describe, I is Investigate, C is Create, and E is Evaluate. The idea is that we're exploring what's happening behind the symptoms, we're creating a plan to intervene, and then we're evaluating the outcome of that plan and creating a sort of feedback loop there. But ultimately, I think, when we're creating a solution, thinking about how we can change the environment is the most important thing. We have very limited ability to change the way that someone who has severe cognitive dysfunction reacts to their environment, but we can often change the environment to not produce that reaction in the first place. One example is with wandering behaviors. Trying to change the environment where you put locks that don't have deadbolts that you can use on the inside of the house, you have to have a key on the inside of the house, and then the family can put that key somewhere safe where the patient is not likely to find it and be able to unlock the door and wander out unsafely. I also think it's really important to acknowledge that as doctors, we are maybe not the best people to always have the answer when it comes to changing a patient's environment. And so, I think we really need to rely on the wisdom of support groups and other people who are going through the challenge of dementia. Our interdisciplinary care teams like social workers and nurses who have experience in managing dementia, and really try to plug the caregivers into as many of these avenues as possible so that they can learn from all of that community of wealth and not always rely on the doctor to have the answer.

Dr Grouse: Switching gears to pharmacologic management, which is a lot of what we do for patients as neurologists. Thinking about agitation, pharmacologic management of agitation can be very challenging. And reading your article, it reminds me how disheartening it is to reflect and how modest the effect of the available options are, along with the many potential risks of their use, When nonpharmacologic interventions fail, what should neurologists recommend for their patients with agitation?

Dr Weisbrod: Yeah, I definitely agree. It's every time I go back and look at this literature and look at what's new, it is a bit disheartening. But even in the face of all that, I really feel like SSRIs are my first-line therapy for most of these patients. I always try to ask myself what might be causing the patient discomfort that they are then manifesting as agitation because they don't have a better way of expressing themselves. Often, I feel like that's anxiety or depression or some other psychological symptom that we might be able to address with an SSRI. So, I tend to use sertraline and escitalopram, start those early and as long as patients are tolerating it, give it a really good trial. Outside of that, escalating to other pharmacologic approaches, even though there's such controversy in the data about antipsychotics and even though there are very real risks, sometimes I think we essentially do need a chemical sedative. And I think that it's important to have a very frank conversation upfront with the caregivers and the medical decision maker for that patient. Make sure we are counseling them on the risk, the increased risk of mortality, and also to make it a time-limited trial. So, I think that saying we're going to try this medication (if the patient's decision maker agrees, obviously) for a month or two months or three months. But I definitely wouldn't want them to just have an open-ended plan where they're going to stay on it indefinitely. It should have some end point where we say, hey, is this working or not? And if it's working, then we'd make a decision, is the improvement in quality of life worth the risks? And if we're not seeing that improvement, then we definitely need to stop it.

Dr Grouse: That seems very reasonable. And then thinking more towards some of the other types of symptoms that can be really challenging, I was really surprised to see how often uncontrolled pain is a significant contributor in patients with dementia. And certainly, both uncontrolled pain and poor sleep can worsen cognitive function and neuropsychiatric symptoms in general. But of course, there's ongoing concerns about side effects of these therapies and how they can also potentially worsen things. How should we be approaching management of pain and insomnia or poor sleep in these patients?

Dr Weisbrod: I think the key is just to start with really low burden treatments and escalate carefully and start with low doses of higher risk medications. So, when I think the low burden treatments for pain, scheduling acetaminophen, 1000 milligrams every eight hours, seems like a trivial thing to do, maybe? But it's actually surprising how much scheduled acetaminophen can take the edge off of pain and might be able to avoid some of these flare-ups of neuropsychiatric symptoms, may be able to really improve that pain a little bit. I do think it really has to be scheduled, though. Trying to rely on patients who have significant cognitive dysfunction to use a PRN medication is going to lead to a lot of problems and undertreatment. And then on the sleep disorder side, I think starting with low-dose Trazodone and gradually increasing the dose of Trazodone as a really safe way of initially approaching the insomnia. And then only when it's a more refractory case do I reach for the high-risk medications. Like for pain, we're talking about opiates. I think there's a lot of very reasonable concern about using opioids in patients who have cognitive dysfunction. But if there is a really good reason to think that they have severe pain, like they have a past pain disorder, I think that just like with antipsychotics, there are definitely real risks to these medications. But at the end of the day, if we are improving someone's quality of life dramatically and the patient's medical decision maker is willing to take on those risks, then we're really doing the patients a favor.

Dr Grouse: Now, another issue that you mentioned in your article, which I see a lot and often struggle with myself, is how and when to deprescribe certain types of medications such as cholinesterase inhibitors and memantine. Any tips or tricks to how to approach this?

Dr Weisbrod: My approach to this has also evolved a bit over the years. The new data that cholinesterase inhibitors may have a mortality benefit in patients with Alzheimer disease has changed my thinking a little bit. But there are still lots of situations where it's just too burdensome or patients seem to be having side effects. And so, I think about deprescribing. The most important thing in my mind is really thorough counseling before deprescribing with the patient's family and medical decision maker. I think that letting them know that we might actually be holding things more stable with the medication than we realize, there could be a flare-up, that we can resume the medication if that flare-up happens but we don't always guarantee getting back to the same point. I think having that conversation ahead of time will ward off some of the worst issues that you have afterwards. And then I think doing a taper of cholinesterase inhibitors over two weeks to a month is probably the most prudent because of some of the data about withdrawal and exacerbation of neuropsychiatric symptoms or cognitive worsening. Memantine, I think the data is a lot more shaky on withdrawal. And so, I think it's less important to gradually taper memantine. But I think that once again, just having the conversation upfront and letting the family know these are the things we have to look out for and these are the risks is going to be the most important.

Dr Grouse: That's really helpful and a great strategy to take advantage of. Another, I think, really difficult topic that I wanted to ask you about was the discussion around nutrition and whether or not to consider putting in some type of a permanent tube for tube feeds. How do you approach that conversation? Certainly a difficult one.

Dr Weisbrod: Yeah, I think it's easily one of the most difficult conversations to have in the care of patients who have dementia. And there's so much emotion in the families when they're having this discussion. And I think really acknowledging there's a huge emotional piece of the conversation is one key piece. For families and caregivers, they're thinking, I don't want my loved one to starve to death. That's usually the most important thing in their mind. We have to address that concern in the conversation, or they're never going to get to a point of satisfaction with the decision that's being made. So, I think while there is still some controversy in the literature about artificial nutrition for patients who have dementia, the bulk of data indicates that it is not helpful for patients. It may exacerbate dementia, it leads to more restraint. And so, I think unless there's some reversible medical condition that we're just trying to do artificial nutrition to get them through, like, they have a stroke and we're expecting that their dysphasia is going to improve because of the stroke is going to heal. Those situations might be a good reason, but if we really think that the driving factor behind their dysphasia is their dementia, I think we should be guiding the families away from that.

And I think that explaining that as dementia gets really advanced, the body is slowly shutting down. The body is not needing as much nutrition, and forcing more nutrition in has not been shown to help people who have dementia. Really putting it in that sort of language is going to help the families understand and be comfortable with that decision. I also think that it's really helpful to consider talking to families about what they can do and not have the entire conversation be about what we're not doing or not putting in a feeding tube for artificial nutrition. So, I think really good counseling about, we can do comfort feeding, we can expand what food we're giving the person who has dementia and really focus on foods that they really enjoy and not worry so much about the health and nutrition anymore. I think that focus on what they can take control of can also help make the decision easier for families.

Dr Grouse: I really like that approach. And I agree, it does seem that it being such an emotional decision with just so much a concern about this underlying feeling of not caring for their family member. I think that is a really great way to look at it and to kind of start off that conversation. Now, I'd love to hear more about what drew you to this field when you first got into your career as a neurologist.

Dr Weisbrod: I had an interesting journey to doing neuropalliative care. Definitely didn't know that's what I was going to do when I started neurology residency. At University of Rochester, we had amazing palliative care physicians that were involved in medical school, and so I got a little bit of exposure to it early on. Then when I was in neurology residency, I first of all realized that I really enjoyed making sure that what we were doing respected a patient's wishes. And so, as other people seemed to run away from those conversations, I was really drawn to them. And so that definitely made me realize that that might be more of the right field for me. But also, as I went through neurology residency, I really discovered that I love so many different things in neurology, and that made me not want to subspecialize and focus on a narrower set of conditions in neurology. So, doing palliative care fellowship was a really good way of getting a specialist tool set and expanding my knowledge in one area, but staying a neurologist, generalist. And I think it also really enhances a lot of the other things I do in neurology. It gives me a lot of additional skills on how to counsel patients and how to prepare for the future in general. I think there's a lot about just good bedside manner in palliative care education. I feel like it helped me become a better neurologist, and I decided that I really loved the palliative care piece as well.

Dr Grouse: Well, we're certainly all grateful that you found this aspect of your career and have been able to share the skills you've honed with us as well. And we really appreciate you taking the time to talk with us about your excellent article today, which I encourage everybody to read.

Dr Weisbrod: Yeah, thank you. It's been wonderful to be on, and I hope that people can take away a few small points from the article.

Dr Grouse: Again, today I've been interviewing Dr Neal Weisbrod about his article on neuropalliative care in dementia, which appears 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 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. 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.

Careful assessment and individualized care, provided by a skilled multidisciplinary care team, are emphasized in the holistic approach to neuropalliative care, which considers physical, psychological, social, spiritual, and existential aspects for people with neuromuscular diseases.

In this episode, Gordon Smith, MD, FAAN, speaks with David J. Oliver, PhD, FRCP, FRCGP, FEAN, author of the article "Neuropalliative Care in Neuromuscular Disorders" 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. Oliver is an honorary professor of Tizard Centre at the University of Kent in Canterbury, United Kingdom.

Additional Resources

Read the article: Neuropalliative Care in Neuromuscular 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: @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: Hello, this is Dr Gordon Smith. Today I've got the great pleasure of interviewing Dr David Oliver about his article on neuropalliative care and neuromuscular disorders, which appears in the December 2025 Continuum issue on neuropalliative care. David, welcome to the Continuum podcast, and please introduce yourself to our audience.

Dr Oliver: Thank you. It's a pleasure and a privilege to be here. I'm a retired consultant in palliative medicine in the UK. I worked at the Wisdom Hospice in Rochester for over thirty years, and I'm also an honorary professor at the University of Kent in Canterbury in the UK. I've had a long interest in palliative care in neurological diseases. Hopefully we can talk about a bit later.

Dr Smith: I really look forward to learning a little bit more about your path and experiences. But I wonder if, before we get into the meat of neuropalliative care with a focus on neuromuscular, if maybe you can kind of set the stage by just defining palliative care. I mean, my experience is that people think of this in different ways, and a lot of folks think- hear palliative care, and they immediately go to end-of-life care or comfort care. So, what- how should we think about maybe the discipline of palliative care or neuropalliative care?

Dr Oliver: I see palliative care as very much responding to people's needs, whether that's physical needs, psychological needs, social or spiritual or existential. So, it can be much earlier in the disease progression. And I think particularly for neurological diseases, early involvement may be very important.

Dr Smith: That was actually going to be my first substantive question, really, was when to begin the conversation and what does that look like and how does it evolve over time. You have a really great figure in the article that kind of emphasizes the various stages within a patient's journey that, you know, palliative care can become involved. But I wonder if you could use ALS as a good example and describe what that looks like from when a patient is first diagnosed with ALS through their course?

Dr Oliver: I think particularly in ALS at the beginning, soon after diagnosis, someone may have a lot of distress and a lot of questions that they need answering. This is a disease they've not had any contact with before. And they don't understand what's going on, they don't understand the disease. So, there may be a great need to have the opportunity to talk about the disease, what may happen, what is happening, how it's going to affect them and their family. As think time goes on, there may be later they develop swallowing problems, and that will need to be talking about a feeding tube and gastrostomy. And again, there may be a lot of issues for the person and their family. As they deteriorate, they may have respiratory problems and need to have discussion about ventilatory support, either by PAP, noninvasive ventilation, or even tracheostomy. And again, I think that's a big issue that needs wide discussion. And then it may be at the final few months of the disease, where they are deteriorating, that they may have increased needs, and their families may have those needs after the death. And I think often families bereaved from someone with a neurological disease such as ALS need a great deal of support, having many mixed emotions. There may be a feeling of relief that they're not involved in that caring, but then a feeling of guilt that they shouldn't be having those feelings. So, I think that can happen over a period of… what with ALS it may be two, three, four years, but it may be similar changes over time with any patient with a neurological disease. It may be ten or fifteen years with Parkinson's or five to ten years with a progressive supranuclear palsy, but there'll be this similar need to look at palliative care during their disease progression.

Dr Smith: So, I'm curious at the time of diagnosis of ALS, how far out in the future do you provide information? So a specific question would be, do you talk about end-of-life management? In my experience, ALS patients are sometimes interested in knowing about that. Or do you really focus on what's in front of you in the next three to six months, for instance?

Dr Oliver: I think it's both. Obviously, we need to talk about the next three to six months, but often giving patients the opportunity to talk about what's going to happen in the future, what may happen at the end of life, I think is important. And I think a disease like ALS, if they look it up on the Internet, they may have a lot of very distressing entries there. There's a lot about how distressing dying with ALS is. And actually confront those and discuss those issues early is really important.

Dr Smith: So of course, the other thing that comes up immediately with an ALS diagnosis---or, for that matter, with any other neurodegenerative problem---is prognosis. Do you have guidance and how our listeners who are giving a diagnosis of ALS or similar disorder should approach the prognostication discussion?

Dr Oliver: It's often very difficult. Certainly in the UK, people may have- be a year into their disease from their first symptoms before they're diagnosed, and I've seen figures, that's similar across the world. So, people may be actually quite way through their disease progression, but I do think we have to remember that the figures show that at five years, 25% of people are still alive, and 5 to 10% are still alive at ten years. We mustn't say you are going to die in the next two or three years, because that may not be so. And I think to have the vagueness but also the opportunity to talk, that we are talking of a deterioration over time and we don't know how that will be for you. I always stress how individual I think ALS is for patients.

Dr Smith: One of the other concepts that is familiar with anyone who does ALS and clearly comes through in your article---which is really outstanding, by the way. So, thank you and congratulations for that---is the importance of multidisciplinary teams. Can you talk a little bit about how neuropalliative care sits within a multidisciplinary care model?

Dr Oliver: I think the care should be multidisciplinary. Certainly in the UK, we recommended multidisciplinary team care for ALS in particular, from the time of diagnosis. And I think palliative care should be part of that multidisciplinary team. It may be a member of the team who has that palliative care experience or someone with specialist experience. Because I think the important thing is that everyone caring for someone with ALS or other neuromuscular diseases should be providing palliative care to some extent: listening to people, discussing their goals, managing their symptoms. And a specialist may only be needed if those are more complicated or particularly difficult. So, I think it is that the team needs to work together to support people and their families. So, looking at the physical aspects where the physiotherapist or occupational therapist may be very important, the psychologicals are a counsellor or psychologist. The social aspects, most of our patients are part of wider families, and we need to be looking at supporting their carers and within their family as well as the person. And so that may involve social work and other professionals. And the spiritual, the why me, their fears about the future, may involve a spiritual counsellor or a chaplain or, if appropriate, a religious leader appropriate to that- for that person. So, I think it is that wider care provided by the team.

Dr Smith: I'm just reflecting on, again, your earlier answers about the Continuum of neuropalliative care. Knowing your patient is super valuable here. So, having come to know someone through their disease course must pay dividends as you get to some of these harder questions that come up later during the disease progression.

Dr Oliver: I think that's the very important use of palliative care from early on in the diagnosis. It's much easier to talk about, perhaps, the existential fears of someone while they can still talk openly. To do that through a communication aid can be very difficult. To talk about someone's fear of death through a communication aid is really very, very difficult. The multidisciplinary team, I think, works well if all the members are talking together. So that perhaps the speech therapist has been to see someone and has noticed their breathing is more difficult, comes back and talks to the doctor and the physiotherapist. The social worker notices the speech is more difficult and comes back and speaks to the speech therapist. So, I think that sort of team where people are working very closely together can really optimize the care. And as you said, knowing the person, and for them to know you and to trust you, I think that's important. Those first times that people meet is so important in establishing trust. And if you only meet people when they're very disabled and perhaps not able to communicate very easily, that's really difficult.

Dr Smith: I think you're reading my mind, actually, because I was really interested in talking about communication. And you mentioned a few times in your article about voice banking, which is likely to be a new concept for many of our listeners. And I would imagine the spectrum of tools that are becoming available for augmented communication for patients who have ALS or other disorders that impair speech must be impressive. I wonder if you could give us an update on what the state of the art is in terms of approaching communication.

Dr Oliver: Well, I think we all remember Stephen Hawking, the professor from Cambridge, who had a very robotic voice which wasn't his. Now people may have their own voice on a communication aid. I think the use of whether it's a mobile phone or iPad, other computer systems, can actually turn what someone types into their own voice. And voice banking is much easier than it used to be. Only a few years ago, someone would have to read for an hour or two hours so the computer could pick up all the different aspects of their voice. Now it's a few minutes. And it has been even- I've known that people have taken their answer phone off a telephone and used that to produce a voice that is very, very near to the person. So that when someone does type out, the voice that comes out will be very similar to their own. I remember one video of someone who'd done this and they called their dog, and the dog just jumped into the air when he suddenly heard his master's voice for the first time in several months. So, I think it's very dramatic and very helpful for the person, who no longer feels a robot, but also for their family that can recognize their father, their husband, their wife's speech again.

Dr Smith: Very humanizing, isn't it?

Dr Oliver: There is a stigma of having the robotic voice. And if we can remove that stigma and someone can feel more normal, that would be our aim.

Dr Smith: As you've alluded to, and for the large majority---really all of our ALS patients, barring something unexpected---we end up in preparing for death and preparing for end of life. I wonder what advice you have in that process, managing fear of death and working with our patients as they approach the end of their journey.

Dr Oliver: I think the most important thing is listening and trying to find what their particular concerns are. And as I said earlier, they may have understood from what they've read in books or the Internet that the death from ALS is very distressing. However, I think we can say there are several studies now from various countries where people have looked at what happens at the end of life for people with ALS. Choking to death, being very distressed, are very, very rare if the symptoms are managed effectively beforehand, preparations are made so that perhaps medication can be given quickly if someone does develop some distress so that it doesn't become a distressing crisis. So, I think we can say that distress at the end of life with ALS is unusual, and probably no different to any other disease group. It's important to make sure that people realize that with good symptom control, with good palliative care, there is a very small risk of choking or of great distress at the end of life.

Dr Smith: Now, I would imagine many patients have multiple different types of fear of death; one, process, what's the pain and experience going to be like? But there's also being dead, you know, fear of the end of life. And then this gets into comments you made earlier about spirituality and psychology. How do you- what's your experience in handling that? Because that's a harder problem, it seems, to really provide concrete advice about.

Dr Oliver: Yeah. And so, I think it's always important to know when someone says they're frightened of the future, to check whether it is the dying process or after death. I've got no answer for what's going to happen afterwards, but I can listen to what someone may have in their past, their concerns, their experience. You know, is their experience of someone dying their memories of someone screaming in pain in an upstairs bedroom while they were a child? Was their grandfather died? Trying to find out what particular things may be really a problem to them and that we can try and address. But others, we can't answer what's going to happen after death. If someone is particularly wanting to look at that, I think that may be involving a spiritual advisor or their local spiritual/religious leader. But often I think it's just listening and understanding where they are.

Dr Smith: So, you brought up bereavement earlier and you discussed it in the article. In my experience is that oftentimes the families are very, very impacted by the journey of ALS. And while ALS patients are remarkably resilient, it's a huge burden on family, loved ones, and their community. Can you talk a bit about the role of palliative care in the bereavement process, maybe preparing for bereavement and then after the loss of their loved one?

Dr Oliver: Throughout the disease progression, we need to be supporting the carers as much as we are the patient. They are very much involved. As you said, the burden of care may be quite profound and very difficult for them. So, it's listening, supporting them, finding out what their particular concerns are. Are they frightened about what's going to happen at the end of life as well? Are they concerned of how they're going to cope or how the person's going to cope? And then after the death, it's allowing them to talk about what's happened and how they are feeling now, cause I think having had that enormous input in care, then suddenly everything stops. And also, the support systems they've had for perhaps months of the carers coming in, the doctor, the nurse, the physiotherapist, everyone coming in, they all stop coming. So, their whole social system suddenly stops and becomes much reduced. And I'm afraid certainly in the UK if someone is bereaved, they may not have the contact with their friends and family because they're afraid to come and see them. So, they may become quite isolated and reduced in what they can do. So, I think it's allowing them to discuss what has happened. And I think that's as important sometimes for members of the multidisciplinary team, because we as doctors, nurses and the wider team will also have some aspects of bereavement as we face not seeing that person who we've looked after for many years and perhaps in quite an intensive way. So, we need to be looking at how we support ourselves. And I think that's another important role of the multidisciplinary team. I always remember in our team, sometimes I would say, I find this person really difficult to cope with. And the rest of the people around the team would go have a sigh of relief because they felt the same, but they didn't like to say. And once we could talk about it, we could support each other and work out what we could do to help us help the patient in the most effective way.

Dr Smith: Well, David, I think that's a great point to end on. I think you've done a really great job of capturing why someone would want to be a palliative care specialist or be involved in palliative care, because one of the themes throughout this conversation is the very significant personal and care impact that you have on patients and families. So, I really appreciate your sharing your wisdom. I really encourage all of our listeners to check out the article, it's really outstanding. I wonder if maybe you might just briefly tell us a little bit about how you got into this space? It's obviously one for which you have a great deal of passion and wisdom. How did you end up where you are?

Dr Oliver: I became interested in palliative care as a medical student, and actually I trained as a family doctor, but I went to Saint Christopher's Hospice following that. I had actually had contact with them while I was a medical student, so I worked Saint Christopher's Hospice in South London when Dame Cecily Saunders was still working there. And at that time Christopher's had sixty-two beds, and at least eight of those beds were reserved for people with ALS or other neurological diseases. And I became very involved in one or two patients and their care. And Dame Sicily Saunders asked me to write something on ALS for their bookshelf that they had on the education area. So, I wrote, I think, four drafts. I went from sort of C minus to just about passable on the fourth draft. And that became my big interest in particularly ALS, and as time went on, in other neurological diseases. When I went to the Wisdom Hospice as a consultant, I was very keen to carry on looking after people with ALS, and we involved ourselves with other neurological patients. That's how I got started. Having that interest, listening to patients, documenting what we did became important as a way of showing how palliative care could have a big role in neurological disease. And over the years, I've been pressing again and again for the early involvement of palliative care in neurological diseases. And I think that is so important so that there can be a proper holistic assessment of people, that they can build up the trust in their carers and in the multidisciplinary team so that they can live as positively as possible. And as a result of that, that their death will be without distress and with their family with them.

Dr Smith: Well, David, you've convinced and inspired me, and I'm confident you have our listeners as well. Thank you so much for a really informative, enjoyable, inspiring conversation.

Dr Oliver: Thank you for inviting me.

Dr Smith: Again, today I've been interviewing Dr David Oliver about his article on neuropalliative care and neuromuscular disorders, which appears in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues, and thanks 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.

Severe acute brain injury presents acute and longitudinal challenges. Addressing total pain involves managing physical symptoms and providing emotional, social, and spiritual support to enhance quality of life for patients and their families.

In this episode, Kait Nevel, MD, speaks with Claire J. Creutzfeldt, MD, author of the article "Neuropalliative Care in Severe Acute Brain Injury and Stroke" in the Continuum® December 2025 Neuropalliative Care issue.

Dr. Nevel is a Continuum® Audio interviewer and a neurologist and neuro-oncologist at Indiana University School of Medicine in Indianapolis, Indiana.

Dr. Liewluck is a professor in the department of neurology at the University of Washington in Seattle, Washington.

Additional Resources

Read the article: Neuropalliative Care in Severe Acute Brain Injury and Stroke With Dr. Claire Creutzfeldt

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: @IUneurodocmom

Guest: @cj_creutzfeldt

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 Nevel: Hello, this is Dr Kait Nevel. Today I'm interviewing Dr Claire Creutzfeldt about her article on neuropalliative care in severe acute brain injury and stroke, which appears in the December 2025 Continuum issue on neuropalliative care. Claire, welcome to the podcast, and please introduce yourself to the audience.

Dr Creutzfeldt: Thanks, thanks for having me. Yeah, I'm an associate professor of neurology at the University of Washington. I'm a stroke neurologist and palliative care researcher and really have focused my career on how we can best integrate palliative care principles into the care of patients with severe stroke and other neurocritical illness.

Dr Nevel: Wonderful. Well, I'm looking forward to talking to you today about your excellent article that I really enjoyed reading. To get us started, can you tell us what you feel is the most important takeaway from your article for the practicing neurologist?

Dr Creutzfeldt: Yeah. You know, I think one is always a little biased by what one is working on currently. And I think what I'm most excited about or feel more strongly about is this idea that stroke and severe acute brain injury are not an event, but really a chronic illness that people are left with usually for the rest of their lives, that change their life radically. And I think that education, research funding, also the clinical setting, current healthcare models aren't set up for that. And this idea that severe acute brain injury, you know, should be viewed as a lifelong condition that requires support across all ranges of goals of care. So curative, restorative, palliative and end-of-life care.

Dr Nevel: Yeah, I love that part of your article, how you really highlighted that concept. And I think obviously that's something that we see in neurology and learn, especially as we transition out of our residency stages. But I think especially for the trainees listening, can sometimes be hospital inpatient-heavy, if you will, that kind of you can lose sight of that, that these acute strokes, severe acute brain injury, it turns into a chronic illness or condition that patients are dealing with lifelong.

Dr Creutzfeldt: Often what we do in a very acute setting is like, is really cool and sexy and like, we can cure people from their stroke if they come, you know, at the right time with the right kind of stroke to the right hospital. And often the symptoms that people come in with much later on are harder to treat and address, partly because the focus in education, clinical and research just hasn't been as much on that time.

Dr Nevel: Yeah, absolutely. So, can you talk to us about this concept of total pain? What does it mean, and how do we incorporate this concept into the way that we view our approach, our patient care?

Dr Creutzfeldt: Total pain is a very old word, but it's sort of coming back into fashion in the palliative care world because it really describes all those sources of suffering or sources of distress, like, beyond what we sort of really think of as sort of the physical symptoms in recovery of stroke. As many of you know, palliative care often thinks in this multidimensional way of the physical distress, physical pain, but also psychological, emotional, social and spiritual, existential. And both- we sort of created sort of a figure that incorporates all of them and also includes both patients and their family members. They share some of these sources of distress, but they also have distinct ones that need to be addressed. And at the core of that total pain is what we need to provide, is sort of optimal communication and goals-of-care prognosis.

Dr Nevel: Yeah, I'm thinking about all of those aspects and not just focusing on one. How does the disease trajectory of severe acute brain injury and stroke play a role in the palliative care approach? And how should we kind of going back to that original point of this idea of severe acute brain injury being an acute event and then oftentimes turning into kind of a chronic condition? How does that play a role in how we address palliative care with our patients, or kind of the stages of palliative care with our patients?

Dr Creutzfeldt: Yeah, I think several things, especially for neurologists, is the more traditional palliative care illnesses, like cancer or congestive heart failure, illnesses where people are diagnosed when they're still functioning at a relatively high level and tend to have time to consider their prognosis and their goals of care in the end of life wishes and to meet with palliative care and to consider their personhood. Who am I? What's most important for me? And stroke, people with stroke, they not only present at their worst, they meet us at their worst, at a time when the patient themselves usually can't speak for themselves, when their personhood has been stripped from them. And then as providers, we, you know, we often really just get that one opportunity to get the conversation right and to guide people towards, you know, what we would call optimal and goal-concordant care.

So, the challenges are many. I do think that the burden of these early conversations is on neurologists and really requires the neurologists to show compassion, to learn communication skills, think really hard about how you want to communicate prognosis and goals of care early on, because it's going to color people's experiences and decisions longitudinally. You asked about, sort of, this trajectory. And I do think it's important to think about, you know, what really happens even after the thrombectomy or even after we discharge people, especially from the ICU. Because for us, often after sort of day five or six, you know, we're sort of done. We're thinking about secondary stroke prevention. And, you know, how do I get the patient to rehab or out of the hospital? For the patients and families, this is when it really all just starts. You know, this is when they- when they're first memories are usually, you know, they hardly remember that acute setting. And so, when they are medically stable, we're done with the acute blood pressure treatment where we've removed the Foley, we've made a decision about nutrition. For us that tends to be a time where we let go a little; for patients and families that tends to actually be the time when they have to think about how am I going to live with this and what are the next several months or years going to look like? And so being there for them is important.

Dr Nevel: That's such a, I think, important point, that when we have our plan in place, we know medically what the plan is for that patient and we're starting to step back, think about rehab or discharge. That's when oftentimes more quote-unquote "reality" steps in for patients and families about what their future is going to look like.

Dr Creutzfeldt: And medical stability is not even close to neurological stability. And so, they are still in the middle of real prognostic uncertainty, and often waxing and waning symptoms or new symptoms coming up for them. Like pain, you know, post thalamic pain syndrome, just as an example, tends to be something that doesn't develop until later.

Dr Nevel: Right, right. Absolutely. And since you touched on this concept of prognostic uncertainty, and, you know, that's something that's so challenging in severe acute brain injury, especially the early days when you talk about this, you know, that things tend to become a little bit more certain as more time passes. But these are really hard conversations because a lot of times feel like big decisions that need to be made early on, you know?

Dr Creutzfeldt: Huge!

Dr Nevel: Sometimes things like trach and PEG and things like that. How do you approach that conversation? I know you talk about that a little bit in your article. You touch on that, some of the, kind of, strategies or concepts that we use in palliative care to approach this prognostic uncertainty with patients.

Dr Creutzfeldt: Yeah, I think the challenge is to balance this acknowledging uncertainty with still being able to guide the families and allow them to trust you. So, there are a few things that I have said in the past, and I have taught in the past, and I don't use anymore. They include sentences like I don't have a crystal ball, for example. Nobody was asking you for one. The other one that I want us to avoid, I think, is the sentence we are terrible at prognosticating. Because what I have seen is that that sentence carries on for families. And families at nine months are still saying, well, you guys are terrible at prognosticating. That's what you told me. First of all, it's all relative, and relative to non-neural providers---even at this time using Google and AI, we're actually quite good at prognosticating. It's just that a wide range early on. So that's how I would change that sentence is, early on after stroke, the range of possible outcomes is still very wide. And so, you've communicated uncertainty without saying I have no idea what I'm doing, which is not true. That is in order to help families be able to trust you and also to trust the person who comes after you, because we all know that a week or two after admission, we do know a lot more. And if we told them on day one that we're terrible at prognosticating, it's hard to sort of build that trust again later.

You also asked about, you know, communication strategies. And I think it's this range of possible outcomes that I think is a good guideline for us to work on. And that range, sort of like a confidence interval, is still very wide early on. And as we collect more information over time, both about the clinical scenario that is evolving in front of us and about the patient who we are learning more about over time, this confidence interval becomes smaller. And that's where this idea of the best case/worst case scenario sort of conversation, for example, comes from: that range of possible outcomes.

Dr Nevel: So, what to you is most challenging about palliative care for patients with severe acute brain injury and stroke?

Dr Creutzfeldt: I think the biggest challenge in stroke care is balancing restorative and curative care with palliative and end-of-life. And that is especially early on when sort of everything is possible, when patients and families want to hear the good news and, I think, are also quite willing to hear the bad news, and probably should. So, I think that that communication is hard when, you know, really we want to provide goal-concordant care. We want to make sure that people get that care that is most important to them and can meet the outcomes that are most important to them.

Dr Nevel: Yeah, agree. What is most rewarding?

Dr Creutzfeldt: I think these patients and families have enormous needs and are extremely grateful if they can find someone that they can trust and who can guide them and who will stick with them. And when I say someone, I think that can be a team. That always depends on how we communicate. In the ideal world, it would be the same person following someone over time, the patient and the family over time. But in our current healthcare system, we're usually moving on from one place to another and being able to communicate with the people that come after you. Telling the family that you're a team and supporting them through that, I think, is really important.

Dr Nevel: Yeah. And like you touched upon, patients and families, I think oftentimes they're looking for, you mentioned, you know, the sharing and communication and they're looking for information.

Dr Creutzfeldt: You know, what's really rewarding is working with a team. And health care has really excelled at that. And I think we have a lot done from them is that it's not always the MD that family needs. And we have a lot of people at our side, and I think we need more of them. Chaplains, social workers; psychologists, actually, I think; and nurses or- in an ideal world, would really work together to support these multidisciplinary, multidimensional symptoms.

Dr Nevel: Yeah. I think it benefits both the patient and the care team, too.

Dr Creutzfeldt: Absolutely!

Dr Nevel: It's helpful to be part of a team. You know, there's camaraderie in that and, like, a shared goal, and I think the thought is rewarding, too.

Dr Creutzfeldt: If we really try and think about severe stroke as a chronic illness or severe acute brain injury as a chronic illness not unlike cancer, then if you think about the systems that have been built for cancer where an entire team of providers follows the patient and their family member over time, I think we need that, too.

Dr Nevel: Yeah, I agree. That point, every member of the team has overlapping things, but has a slightly individual role to a degree too, which is also helpful to the patient and the family. You talked about this a little bit in your article, and I want to hear more from you about what we know about healthcare disparities in this area of medicine and in providing palliative care for patients with severe acute brain injury and stroke.

Dr Creutzfeldt: Yeah, I think actually a lot of the huge decisions that we make, especially early on, are highly variable. And can identify people by various things, whether it's their race or ethnicity or sex or age, or even where they live in the United States. But decisions tend to be made differently. And so, just as an example, we know that I think people who identify as black, for sure, are less likely to receive the acute, often life-saving interventions like TNK or thrombectomy and more likely to undergo longer-term, life-prolonging treatment like PEG and trach. That seems true, after adjusting for clinical severity and things like that. And so disparities like that may be based on cultural preferences or well-informed decisions, and then we can support them. But of course, unfortunately there's a clear idea when we see, often, unexplained variability that a lot is due to uninformed decisions and poor communication and possibly racism in certain parts. And that is, of course, something that has to be addressed.

Dr Nevel: Yeah, absolutely. What are future areas of research in this area? I know you do a lot of research in this area and I'd love to hear about some of it and what you think is exciting or kind of new and going to change the way we think about things, perhaps.

Dr Creutzfeldt: I think every aspect of stroke continues to be exciting and just, you know, our focus of today and my research is on palliative care. I mean, obviously, the things we can do in rehab these days have to be embraced, and the acute stuff. But I think this longitudinal support, an ideally longitudinal multidisciplinary support for patients and families, requires more research. I think it will help us with prognosis. It will help us with communicating things early on and learning more about sort of multidimensional symptoms of these patients over time. That requires more research. And then, how can we change the healthcare system---in a sustainable way, obviously---to maximize quality of life for the survivors and their families?

Dr Nevel: Going back to that total pain again, making sure that we're incorporating that longitudinally.

Dr Creutzfeldt: I think there are currently 94 million people worldwide living with the aftermath of a stroke. I joined a stroke survivor support group recently. People are supporting each other that have that had their stroke, like, 14 years ago and are still in that just to show that this is not one and done. People are still struggling with symptoms afterwards and want support.

Dr Nevel: Before we close out, is there anything else that you'd like to add?

Dr Creutzfeldt: Your questions have all been great, and I think one observation is that we've talked a lot about, sort of, new ideas of the need for longitudinal care for patients after severe stroke. There's still a ton for all of us to do to optimize the care we provide in the very acute setting, to optimize the way we communicate in the very acute setting. To make sure we are, for example, providing the same message as our team members and providing truly compassionate goal-concordant care from the time they hit the emergency room throughout. Including time-limited trials, for example.

Dr Nevel: Well, thank you so much for chatting with me today about your article on this really important topic. Again, today I've been interviewing Dr Claire Creutzfeldt about her article on neuropalliative care in severe acute brain injury and stroke, which appears in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues. And as always, to our listeners, please check out the article. It's great, highly recommend. And thank you to our listeners for joining us today. And thank you so much, Claire, for sharing your expertise with us today.

Dr Creutzfeldt: Thanks for having me.

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.

In the hospital setting, neurologists may be responsible for managing common end-of-life symptoms. Comprehensive end-of-life care integrates knowledge of the biomedical aspects of disease with patients' values and preferences for care; psychosocial, cultural, and spiritual needs; and support for patients and their families.

In this episode, Teshamae Monteith, MD, FAAN, speaks with Claudia Z. Chou, MD, author of the article "End-of-Life Care and Hospice" in the Continuum® December 2025 Neuropalliative Care issue.

Dr. Monteith is the associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida.

Dr. Chou is an assistant professor of neurology and a consultant in the Division of Community Internal Medicine, Geriatrics and Palliative Care at Mayo Clinic in Rochester, Minnesota.

Additional Resources

Read the article: End-of-Life Care and Hospice

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: @headacheMD

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 Monteith: This is Dr Teshamae Monteith. Today I'm interviewing Dr Claudia Chou about her article on end-of-life care and hospice, which is found in the December 2025 Continuum issue on neuropalliative care. Welcome to our podcast. How are you?

Dr Chou: I'm doing well. Thank you for having me. This is really exciting to be here.

Dr Monteith: Absolutely. So, why don't you introduce yourself to our audience?

Dr Chou: Sure. My name is Claudia Chou. I am a full time hospice and palliative medicine physician at Mayo Clinic in Rochester. I'm trained in neurology, movement disorders, and hospice and palliative medicine. I'm also passionate about education, and I'm the program director for the Hospice and Palliative Medicine fellowship here.

Dr Monteith: Cool. So just learning about your training, I kind of have an idea of how you got into this work, but why don't you tell me what inspired you to get into this area?

Dr Chou: It was chance, actually. And really just good luck, being in the right place at the right time. I was in my residency and felt like I was missing something in my training. I was seeing these patients who were suffering strokes and had acute decline in functional status. We were seeing patients with new diagnosis of glioblastoma and knowing what that future looked like for them. And while I went into neurology because of a love of neuroscience, localizing the lesion, all of those things that we all love about neurology, I still felt like I didn't have the skill set to serve patients where they perhaps needed me the most in those difficult times where they were dealing with serious illness and functional decline. And so, the serendipitous thing was that I saw a grand rounds presentation by someone who works in neurology and palliative care for people with Parkinson's disease. And truly, it's not an exaggeration to say that by the end of that lecture, I said, I need to do palliative care, I need to rotate in this, I need to learn more. I think this is what I've been missing. And I had plans to practice both movement disorders neurology and palliative care, but I finished training in 2020… and that was not a long time ago. We can think of all the things that were going on, all the different global forces that were influencing our day-to-day decisions. And the way things worked out, staying in palliative care was really what my family and I needed.

Dr Monteith: Wow, so that's really interesting. Must have been a great lecturer.

Dr Chou: Yes, like one of the best.

Dr Monteith: So why don't you tell me about the objectives of your article?

Dr Chou: The objectives may be to fill in some of the gaps in knowledge that may be present for the general neurologist. We learn so much in neurology training, so much about how to diagnose and treat diseases, and I think I would argue that this really is part and parcel of all we should be doing. We are the experts in these diseases, and just because we're shifting to end-of-life or transitioning to a different type of care doesn't mean that we back out of someone's care entirely or transition over to a hospice or palliative care expert. It is part of our job to be there and guide patients and their care partners through this next phase. You know, I'm not saying we all need to be hospice and palliative care experts, but we need to be able to take those first steps with patients and their care partners. And so, I think objectives are really to focus in on, what are those core pieces of knowledge for end-of-life care and understanding hospice so we can take those first steps with patients and their care partners?

Dr Monteith: So, why don't you give us some of those essential points in your article?

Dr Chou: Yeah. In one section of the article, I talk about common symptoms that someone might experience at the end of life and how we might manage those. These days, a lot of hospitals have order sets that talk us through those symptoms. We can check things off of a drop-down menu. And yet I think there's a little bit more nuance to that. There may be situations in which we would choose one medication over another. There may be medications that we've never really thought of in terms of symptom management before. Something that I learned in my hospice and palliative medicine fellowship was that haloperidol can be helpful for nausea. I know that's usually not one of our go-tos in neurology for any number of reasons. So, I think that extra knowledge can take us pretty far when we're managing end of life symptoms, particularly in the hospital setting. And then I think the other component is the hospice component. A lot of us may have not had experience talking about hospice, talking about what hospice can provide, and again, knowing how to take those first steps with patients. We may be referring to social work or palliative medicine to start those conversations. But again, I think this is something that's definitely learnable and something that should be part of our skill set in neurology.

Dr Monteith: Great. And so, when you speak about symptom management and being more comfortable with the tools that we have, how can we be more efficient and more effective at that?

Dr Chou: Think about what the common symptoms are at end of life. We may know this kind of intuitively, but what we commonly see are things like pain, nausea, dyspnea, anxiety, delirium or agitation. And so, I think having a little bit of a checklist in mind can be helpful. You know, how can I systematically think through a differential, almost, for why my patient might be uncomfortable? Why they might be restless? Have I thought through these different symptoms? Can I try a medication from my tool kit? See if that works, and if it does, we can continue on. If not, what's the next thing that I can pivot to? So, I think these are common skills for a little bit of a differential diagnosis, if you will, and how to work through these problems just with the end-of-life lens on it.

Dr Monteith: So, are there any, like, validated tools or checklists that are freely available?

Dr Chou: I don't think there's been anything particularly validated for end-of-life care in neurologic disease. And so, a lot of our treatments and our approaches are empiric, but I don't think there's been anything validated, per se.

Dr Monteith: Great. So, why don't we talk a little bit about the approach to discussions on hospice? We all, as you kind of alluded to, want to be effective neurologists, care for our patients, but we sometimes deal with very debilitating diseases. And so, when we think that or suspect that our patient is kind of terminally ill, how do we approach that to our patients? Of course, our patients come from different backgrounds, different experiences. So, what is your approach?

Dr Chou: So, when we talk about hospice and when a patient may be appropriate for hospice, we have to acknowledge that we think that they may be in the last six months of their disease. We as the neurologist are the experts in their disease and the best ones to weigh in on that prognosis. The patient and their care partners then have to accept that the type of care that hospice provides is what makes sense for them. Hospice focuses on comfort and treating a patient's comfort as the primary goal. Hospice is not as interested in treating cancer, say, to prolong life. Hospice is not as interested in life-prolonging measures and treatments that are not focused at comfort and quality of life. And so, when we have that alignment between our understanding of a patient's disease and their prognosis and the patient care partner's goal is to focus on comfort and quality of life above all else, that's when we have a patient who might be appropriate for hospice and ready to hear more about what that actually entails.

Dr Monteith: And what are some, maybe, myths that neurologist healthcare professionals may have about hospice that you really want us to kind of have some clarity on?

Dr Chou: That's a great question. What we often tell patients is that hospice's goal is to help patients live as well as possible in the time that they have left. Again, our primary objective is not life prolongation, but quality of life. Hospice's goal is also not to speed up or slow down the natural dying process. Sometimes we do get questions about that: can't you make this go faster or we're ready for the end. But really, we are there to help patients along the natural journey that their body is taking them on. And I think hospice care can actually be complex. In the inpatient setting, in particular in neurology, we may be seeing patients who have suffered large strokes and have perhaps only days to a few weeks of life left. But in the outpatient setting and in the home hospice setting, patients can be on hospice for many months, and so they will have new care needs, new urinary tract infections, sometimes new rashes, the need to change their insulin regimens around to avoid extremes of hyperglycemia or hypoglycemia. So, there is a lot of complexity in that care and a lot that can be wrapped up under that quality-of-life and comfort umbrella.

Dr Monteith: And to get someone to hospice requires a bit of prognostication, right? Six months of prediction in terms of a terminal illness. I know there's some nuances to that. So how can you make us feel more comfortable about making the recommendations for hospice?

Dr Chou: I think this is a big challenge in the field. We're normally guided by Medicare guidelines that say when a patient might be hospice-appropriate. And so, for a neurologic disease, this really only encompasses four conditions: ALS, stroke, coma, and Alzheimer's dementia. And we can think of all the other diseases that are not encompassed in those four. And so, I think we say that we paint the picture of what it means to have a prognosis of six months or less. So, from the neurologic side, that can be, what do you know about this disease and what end-stage might look like? What is the pattern of the patient's functional decline? What are they needing more help with? Are there other factors at play such as heart failure or COPD that may in and of themselves not be a qualifying diagnosis for hospice, but when it's taken together in the whole clinical picture, you have a patient who's very ill and one that you're worried may die in the next six months or less?

Dr Monteith: Then you also had some nice charts on kind of disease-specific guidelines. Can you take us a little bit through that?

Dr Chou: The article does contain tables about specific criteria that may qualify someone for hospice with these neurologic conditions. And they are pretty dense. I know they're a checklist of a lot of different things. And so, how we practice is by trying to refer patients to hospice based on those guidelines as much as possible and then using our own clinical judgment as well, what we have seen through taking care of patients through the years. So, again, really going back to that decline. What is making you feel uncomfortable about this patient's prognosis? What is making you feel like, gosh, this patient could be well supported by hospice, and they could have six months or less? So, all of that should go into your decision as well. And all of that should go into your discussion with the patient and their care partners.

Dr Monteith: Yeah. And reading your article, what stood out was all the services that patients can receive under hospice. So, I think sometimes people think, okay, this is terminal illness, let's get to hospice for whatever reasons, but not necessarily all the lists and lists and lists of benefits of hospice. So, I don't know that everyone's aware of all those benefits. So, can you talk to us a little bit about that?

Dr Chou: Yeah, I like that you brought that up because that's also something that I often say to patients and their care partners when we're talking about hospice. When the time is right for a patient to enroll in hospice, they should not feel like they're giving anything up. There should be no more clinical trial that they're hoping to chase down, and so they should just feel like they're gaining all of those good supports: care that comes to their home, a team that knows them well, someone that's available twenty-four hours a day by phone and can actually even come into the home setting if needed to help with symptom management. Hospice comes as well with the psychosocial supports for just coping with what dying looks like. We know that's not easy to be thinking about dying for oneself, or for a family member or care partner to be losing their loved one. So, all of those supports are built into hospice. I did want to make a distinction, too, that hospice does not provide custodial care, which I explain to patients as care of the body, those daily needs for bathing, dressing, eating, etc. Sometimes patients are interested in hospice because they're needing more help at home, and I have to tell them that unfortunately, our healthcare system is not built for that. And if that's the sole reason that someone is interested in hospice, we have to think about a different approach, because that is not part of the hospice benefit.

Dr Monteith: Thank you for that. And then I learned about concurrent care. So why don't you tell us a little bit about that? That's a little bit of a nuance, right?

Dr Chou: Yeah, that is a little bit of a nuance. And so, typically when patients are enrolling in hospice, they are transitioning from care the way that it's normally conducted in our healthcare system. So, outpatient visits to all of the specialists and to their primary care providers, the chance to go to the ER or the ICU for higher levels of care. And yet there are a subset of patients who can still have all of those cares alongside hospice care. That really applies to two specific populations: veterans who are receiving care through the Veterans Administration, and then younger patients, so twenty six years old and less, can receive that care through, essentially, a pediatric carve out.

Dr Monteith: Great. Well, I mean, you gave so much information in your article, so our listeners are going to have to read it. I don't want you to spill everything, but if you can just kind of give me a sense what you want a neurologist to take away from your article, I think that would be helpful.

Dr Chou: I think what I want neurologist to take away is that, again, this is something that is part of what we do as neurologists. This is part of our skill set, and this is part of what it means to take good care of patients. I think what we do in this transition period from kind of usual cares, diagnosis, full treatment to end of life, really can have impact on patients and their care partners. It's not uncommon for me to hear from family members who have had another loved one go through hospice about how that experience was positive or negative. And so, we can think about the influence for years to come, even, because of how well we can handle these transitions. That really can be more than the patient in front of us in their journey. That is really important, but it can also have wide-reaching implications beyond that.

Dr Monteith: Excellent. And I know we were talking earlier a little bit about your excitement with the field and where it's going. So why don't you share some of that excitement?

Dr Chou: Yeah. And so, I think there is a lot still to come in the field of neuropalliative care, particularly from an evidence base. I know we talked a lot about the soft skills, about presence and communication, but we are clinicians at heart, and we need to practice from an evidence base. I know that's been harder in palliative care, but we have some international work groups that really are trying to come together, see what our approaches look like, see where standardization may need to happen or where our differences are actually our strength. I think there can be a lot of variability in what palliative care looks like. So, my hope is that evidence base is coming through these collaborations. I know it's hard to have a conversation these days without talking about artificial intelligence, but that is certainly a hope. When you look at morbidity, when you look at patients with these complicated disease courses, what is pointing you in the direction of, again, a prognosis of six months or less or a patient who may do better with this disease versus not?

And so, I think there's a lot to come from the artificial intelligence and big data realm. For the trainees listening out there, there is no better time to be excited about neuropalliative care and to be thinking about neuropalliative care. I said that I stumbled upon this field, and hopefully someone is inspired as well by listening to these podcasts and reading Continuum to know what this field is really about. And so, it's been exponential growth since I joined this field. We have medical students now who want to come into neuropalliative care as a profession. We have clinicians who are directors of neuropalliative care at their institutions. We have an international neuropalliative care society and neuropalliative care at AAN. And I think we are moving closer to that dream for all of us, which is that patients living with serious neurologic illness can be supported throughout that journey. High-quality, evidence-based palliative care. We're not there yet, but I think it is a possibility that we reach that in my lifetime.

Dr Monteith: Well, excellent. I look forward to maybe another revision of this article with some of that work incorporated. And it's been wonderful to talk to you and to reflect on how better to approach patients that are towards the end of life and to help them with that decision-making process. Thank you so much.

Dr Chou: Yeah, thank you for having me. And we're very excited about this issue.

Dr Monteith: Today. I've been interviewing Dr Claudia Chou about her article on end-of-life care and hospice, 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 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. 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.

Neurologists are privileged to act as guides for patients as they navigate the complex course of serious neurologic illnesses. Because of the impact on quality of life, personhood, and prognosis, neurologists must be able to conduct serious-illness conversations to improve rapport, reduce patient anxiety and depression, and increase the likelihood that treatment choices agree with patient goals and values.

In this episode, Teshamae Monteith, MD, FAAN speaks with Jessica M. Besbris, MD, author of the article "The Approach to Serious-Illness Conversations" in the Continuum® December 2025 Neuropalliative Care issue.

Dr. Monteith is the associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida.

Dr. Besbris is an assistant professor of neurology and internal medicine and the Director of Neuropalliative Care at Cedars-Sinai Medical Center in Los Angeles, California.

Additional Resources

Read the article: The Approach to Serious-Illness Conversations

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: @headacheMD

Guest: @JessBesbris

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 Monteith: Hi, this is Dr Teshamae Monteith. Today I'm interviewing Dr Jessica Besbris about her article on the approach to serious illness conversation, which is found in the December 2025 Continuum issue on neuropalliative care. How are you?

Dr Besbris: I'm doing great. Thank you so much for having me here today.

Dr Monteith: Well, thank you for being on our podcast.

Dr Besbris: My pleasure.

Dr Monteith: Why don't we start off with you introducing yourself?

Dr Besbris: Sure. So, my name is Jessica Besbris. I am a neurologist with fellowship training in palliative care, and I am currently at Cedars Sinai Medical Center in Los Angeles, where I am the director of our neuropalliative care program.

Dr Monteith: Excellent. So, how did you get involved in that?

Dr Besbris: Like, I think, many neurologists, I always knew I wanted to be a neurologist---or, I should say, from the moment I decided to be a doctor I knew that that was the type of doctor I wanted to be, a neurologist. So, I went into medical school with the aim of becoming a neurologist. And very quickly, when I started my clinical years, I was exposed to patients who were living with very serious illnesses. And I found myself really drawn to opportunities to help, opportunities to make people feel better, opportunities to improve quality of life in situations that on the face of it seemed really challenging, where maybe it seemed like our usual treatments were not necessarily the answer or were not the only answer. And so, I pretty quickly recognized that taking care of patients with serious illness was going to be a big part of my life as a neurologist and that palliative care was the way I wanted to help these patients and families.

Dr Monteith: And you mentioned you're leading the group. So, how many colleagues do you have in the program?

Dr Besbris: We have a very large palliative care group, but within neuropalliative care, it's myself and one other physician, a nurse practitioner, and a social worker.

Dr Monteith: Okay, well, I know you guys are busy.

Dr Besbris: Yes, we are very happy to be busy.

Dr Monteith: Yes. So, let's talk about the objectives of your article.

Dr Besbris: Sure. So, the goal of this article is to impress upon neurologists that it really is all of our jobs as neurologists to be having these conversations with our patients who are affected with serious illness. And then, in most areas of neurology, these conversations will come up. Whether it's giving a life changing diagnosis, or talking about treatment choices, or treatment not going the way that we had hoped, or even sometimes progression of disease or end-of-life care. These topics will come up for most of us in neurology, and really, we're hoping that this article not only makes the case that neurologists can and should be having these conversations, but that there are skills that we can teach in this article and with other resources to improve the skill level and sense of confidence that neurologists have when they enter into these conversations.

Dr Monteith: Great. I read that there are some developments in the field, on organizational levels, about really making these skills part of standard of care in terms of education. So, can you speak to that?

Dr Besbris: Yes. So, there have been a couple of really landmark papers and changes in the educational landscape that I think have really brought neuropalliative care in general, and serious illness conversation in particular, to the forefront. So, there were the position statements released by the American Academy of Neurology in 1996 and 2022, both of which really said, hey, all neurologists should be doing this and receive training on how to have these conversations and provide this care. And the ACGME, the Accreditation Council for Graduate Medical Education, also requires neurology residency programs to learn how to communicate with patients and families, assess goals, and talk about end-of-life care. So, there's a real structural imperative now for neurologists to learn early on how to have serious illness conversations with their patients.

Dr Monteith: Great. If there's anything for our listeners to get out of this conversation, what are the essential points?

Dr Besbris: If you only take away one or two things from this conversation, I hope that they're that this is an awesome responsibility to be in a moment with a patient going through something challenging, to meet them in that moment with thoughtful, honest, empathic conversations about who they are and what's important to them. And that, just like any other procedure, these are skills that can be taught so that you can feel really confident and comfortable being in these moments.

Dr Monteith: Excellent. Wow. Okay, I feel your energy and your empathy already. And so, why don't we just talk about skills? What is the best way to deliver tough news? I read this wonderful chart on SPIKES protocol.

Dr Besbris: Yeah, the SPIKES protocol is one really well-known way to deliver serious news. And what's nice about SPIKES is it gives a mnemonic. And as neurology learners, we all love a good mnemonic to help you really center yourself when you're entering into these conversations so that you have a structured format to follow, just like with any procedure. So, the SPIKES protocol stands for Setting: so, making sure you have the right environment; Perception, or assessing what your patient or surrogate decision maker knows already so that you know where to begin; receiving an Invitation to deliver serious news. And then K stands for Knowledge, delivering in a clear and concise way the information that you want to make sure the family or patient walk away with. E for exploring Emotion; and S for really Summarizing what's been discussed and Strategizing on next steps. I think that having these kinds of conversations, it's just like being expert in anything. When you first start learning, it's helpful to have a set of very concrete steps you can follow. And you might even think through the mnemonic as you get ready to walk into that room. And as you become more expert, the flow becomes more natural. And maybe what you do before walking in to prepare is just honing what is that headline? What is that concise statement that I'm really going to give? And the rest may start to feel more natural and less protocolized.

Dr Monteith: And there are a few other mnemonics. There's the NURSE mnemonic, which I like. You know, there's a balance between saying things and sounding kind of… you know, sometimes they're like, well, how could you understand what I'm going through? Have you been through something like this? And people shy away, and they're afraid to kind of be a part of these conversations. So how do we approach that with this, a NURSE mnemonic in a way that's kind of sincere?

Dr Besbris: Absolutely. So, the NURSE mnemonic, unlike SPIKES, is not a step-by-step protocol. So, NURSE is a mnemonic, but you don't go through each letter and sort of give a naming statement and then an understanding statement and then a respecting statement and so on. Nurse is really a toolkit of different types of statements that we can give in response to emotions so that when you find yourself in a situation where a patient or family member is tearful, is scared, is angry, is expressing feelings, you have some phrases ready that feel authentic to you and that you feel are going to meet the moment and allow you to empathically respond to those emotions. Because until we do that, we really can't move further in this conversation with our patients and families feeling heard and respected. So, that NURSE mnemonic, those Naming, Understanding, Respecting, Supporting and Exploring statements, are really examples of statements that we can use to meet that moment with empathy and understanding and without implying that we have walked in their shoes. We want to avoid being presumptuous and really focus on just being present and empathic.

Dr Monteith: So, let's just kind of run through, I think it's really important. Let's run through some of these examples. Maybe if someone's crying hysterically, how would we respond to that?

Dr Besbris: So, this is an opportunity for Naming. And I made this one, I think, in the chart, a little bit obvious, meaning that we recognize when someone is crying that they are feeling probably very sad. This is an opportunity for us to name and thus normalize that emotion. I just think something as simple as, I think anyone would be really sad hearing this. These responses are not intended to fix this emotion. I'm not trying to get someone to stop crying or to, you know, necessarily not feel sad. It's really just to say, yeah, it's normal that you're feeling sad. It's okay. I'm here with you while you're feeling sad. And I'm going to be with you no matter what you're bringing to the table.

Dr Monteith: Yeah. Let's go through just a couple of others. I mean, these are really good.

Dr Besbris: Sure. Maybe Respecting.

Dr Monteith: Yeah. So, my Dad is a fighter. Only God, not doctors, can know the future.

Dr Besbris: Yeah. So, I love giving these examples with our learners because these statements, things like my Dad is a fighter or God will bring me a miracle or you don't know the answer. Only God knows what's going to happen, I think that they give a lot of doctors a feeling of confrontation, a feeling of anxiety. And I think there are a few reasons for that. And I think one of the main ones is that they're statements that imply that we as doctors are not all-powerful and it's our patients or families sort of looking for a different locus of control, whether it's internal fortitude or a higher power. They're looking to something other than us, and maybe that makes us feel a little bit uncomfortable. And I think that sometimes physicians think that these statements imply that someone doesn't even understand what's going on. But maybe they're coming to this from a place of denial. And I would argue that when someone comes to you with a statement like my dad is a fighter or, you know, I'm looking to God to bring me a miracle or to show me the future. I think that what they're really saying is, wow, I'm really hearing that things are serious, so much so that I'm reaching for these other resources to give me strength and hope. I don't think anyone asks for a miracle if they think that a miracle is not needed, if the problem is easy to fix. And so, rather than come to these types of statements from a confrontational place of I'm the doctor and I know best, I think this is a great opportunity to show some respect and give some respecting statements. Your dad is a fighter. I don't think he could have come this far without being a fighter. Or, you know, I am so grateful that you have your faith to lean on during times like these to give you strength. These are also nice opportunities for exploring statements. For example, I'm so grateful to learn more about your dad. Can you tell me what it is that he has been fighting for all of this time?

Dr Monteith: I love that. It's like a follow-up, and also validating.

Dr Besbris: Yeah, it's validating. And it allows us to learn a little bit more about this person and to learn, well, is he fighting for a life that we can still achieve with our interventions to lead into the next part of a conversation? Or, is God is going to bring me a miracle? Well, tell me what a miracle looks like for you. I can't tell you how many times I thought someone was going to tell me that a miracle would be cure. And sometimes that is what comes up. But other times I hear, a miracle would be, you know, my loved one surviving long enough for the rest of the family to gather. And, you know, that is certainly something we can work towards together.

Dr Monteith: So, why don't we talk a little bit about approach to goals of care discussions? They are tough, and let's just put it into perspective to the critical care team. It's time, the person's been in the ICU, the family wants everything thrown at medically. And it's to the point that the assessment is that would be medical futility.

Dr Besbris: Lots to unpack there.

Dr Monteith: I wanted to make it hard for you.

Dr Besbris: No, no, this is good! I mean, this is something- I work in a, you know, almost one thousand-bed hospital with a massive critical care building. And so, these are not unusual circumstances at all. First of all, I would just say that goals of care conversations are not only about end-of-life care. And I make that point a few different times in the article because I think when people imagine goals of care, and one of the reasons that I think clinicians may sometimes shy away from goals of care discussions, is that they think they have to be sad, they have to be scary, they have to be about death and dying. And I would argue that, really, goals of care discussions are about understanding who a person is, how they live their life, what's most important to them. Most of these conversations should be about living. How are we going to together achieve a quality of life that is meaningful for you and treatments that are going to fit your needs and your preferences? But there is a little slice of that pie in the pie chart of goals of care discussions that is in the arena of end-of-life care. For example, ICU care with, really, the highest levels of intensity of care, and having to talk about whether that still is meeting the moment from the perspective of goals as well as the perspective of efficacy.

So, from the goals standpoint, I approach these conversations just like any other goals of care conversation. Usually at this point, we're speaking to family members and not our patients because in a neurocritical care unit, if someone is that sick, they probably are incapacitated. And so, it's a moment to really sit down with family and say, please tell me about the human being lying in that bed. They can't introduce themselves. What would they tell me about themselves if they could speak right now? What kinds of things were important to them in the course of their treatment? What kind of a life did they want to live or do they want to live? So that then we can reflect on, well, can our treatment achieve that? And this process is called shared decision making. This is really where we take in data from the family, who are experts in the patient, and then our own expertise in the illness and what our treatments can achieve, and then bring all of that information together to make a recommendation that aligns with what we believe is right for a particular patient.

So, in the example that you gave, the extreme circumstance where someone is receiving maximal intensive care and we're starting to reach the point of futility, I think that we need to first really understand, well, what does futility mean for this particular patient? Is it that we as healthcare providers would not value living in the state this person is in? Or is it that the treatments truly cannot physiologically keep them alive or meet their stated goals? If it's the first one, that I wouldn't want to be on machines unconscious, you know, at the end of my life, well, I have to set that aside. It's really about what this patient wants. and if the family is telling you they valued every breath, every moment, and if we have care that can achieve that, we should continue to offer and recommend that care.

And as healthcare providers, it is so important that we do explain when treatments are not going to be able to physiologically meet a patient's needs or achieve their goals. And that's where we can say, I'm going to continue to do everything I can, for example, to, you know, keep your loved one here for these meaningful moments. And we are at a point where performing CPR would no longer be able to restart his heart. And I just wanted to let you know that that's not something that we're going to do because I have an obligation not to provide painful medical treatments that will not work. So, my approach to futility is really different than my approach to shared decision-making because in the context of objective futility, it's not about necessarily- it's not about decision-making, it's not about shared decision-making as much as it is explaining why something is simply not going to work. Does that make sense?

Dr Monteith: Absolutely. And what I love in your article is that, you know, you go beyond the skills, but also potential communication challenges---for example, patients' neurologic status, their ability to understand complex communication, or even cultural differences. So, can you speak about that briefly?

Dr Besbris: Absolutely. In the world of neurological serious illness, it is incredibly common for our patients to face challenges in communication. That might be because they are aphasic, because they have a motor speech deficit, it might be because they're intubated, it might be because their capacity is diminished or absent. And so, there are a lot of challenges to keeping patients in these conversations. And in the article, I summarize what those challenges can look like and some strategies that we can use to continue to engage our patients in these conversations to the greatest extent possible and also turn to their surrogate decision makers where the patients themselves are no longer able to participate or participate fully. In terms of cultural considerations, I mean, there could be an entire article or an entire Continuum just on cultural considerations in neurology and in serious illness communication.

And so, the key points that I really tried to focus on were exploring from a place of cultural humility what the beliefs and practices of a particular patient and family are in their cultural context, to ask questions to help you understand how those cultural differences may impact the way you approach these conversations. And being sensitive to folks with limited English proficiency, to ensure that we are using medical interpreters whenever possible.

Dr Monteith: Excellent. Well, there's so much in the article. There's already so much that we just discussed, but our listeners are going to have to go to the article to get the rest of this. I do want to ask you to just kind of reflect on, you know, all the different cases and experiences that you have, and just, if you can give us a final remark?

Dr Besbris: I can think of a number of cases that I've seen in my work as both an inpatient and outpatient neuropalliative provider where I've seen patients after strokes in the hospital with uncertain prognosis, whose families were struggling with a decision around feeding tubes. And where we have made a determination based on goals; for example, to pursue what's called a time-limited trial, to say let's place a feeding tube, let's meet again in the clinic in a few months after some rehab and let's just see, is this meeting this patient 's goals and expectations?

I have been pleasantly surprised by the number of patients who have walked into my office after a period of rehabilitation who have regained the ability to eat, who are living an acceptable quality of life, and who have expressed gratitude for the work that I did in eliciting their goals, helping support their families. And some of whom have even come in and said, now that I'm doing better, I'd really like to do an advance directive to better guide my family in the future. People asking for more goals of care discussions, having seen how successful and helpful these conversations have been.

Dr Monteith: Great. That's really life-altering for that patient, the family, so many people. Thank you so much for the work you do and for writing this great article and sharing all of this that we really need to learn more about.

Dr Besbris: It's been a privilege. Thank you so much for talking with me today.

Dr Monteith: Today I've been interviewing Dr Jessica Besbris about her article on the approach to serious illness conversation, 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 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. 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.

In this episode, Lyell K. Jones Jr, MD, FAAN, speaks with Maisha T. Robinson, MD, MSHPM, FAAN, FAAHPM, who served as the guest editor of the December 2025 Neuropalliative Care issue. They provide a preview of the issue, which publishes on December 2, 2025.

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. Robinson is the Chair of the Division of Palliative Medicine and an assistant professor of neurology at Mayo Clinic in Jacksonville, Florida.

Additional Resources

Read the issue: continuum.aan.com

Subscribe to Continuum®: shop.lww.com/Continuum

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: @LyellJ

Guest: @neuropalldoc

Full episode transcript available here

Dr Jones: Most of us who see patients with chronic progressive neurologic disease are aware of the value of palliative care. The focus on symptom management and quality of life is a key aspect of helping these patients. But how many of us are comfortable starting the conversation about palliative care or care at the end of life? Today we have the opportunity to speak with a leading expert on neuropalliative care, Dr Maisha Robinson, about how we can better integrate neuropalliative care into our practices.

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 Maisha Robinson, who is Continuum's Guest Editor for our latest issue of Continuum on neuropalliative care, and our first-ever issue fully dedicated to this topic. Dr Robinson is an assistant professor of neurology at Mayo Clinic in Florida, where she is Chair of the Division of Palliative Medicine, and she also serves on the AAN Board of Directors as Chair of the Member Engagement Committee. Dr Robinson, welcome. Thank you for joining us today. Why don't you introduce yourself to our listeners?

Dr Robinson: Well, Dr Jones, thank you for having me. Really a pleasure to be here. I'm Maisha Robinson at the Mayo Clinic in Jacksonville, Florida. I spent my time as a neurohospitalist, a general palliative care physician, and a neuropalliative care physician.

Dr Jones: So, this is a topic that at Continuum, we have heard about from subscribers for a long time requesting a fully dedicated issue to palliative care. And we've titled this neuropalliative Care. So, we want to respond to our subscribers and bring them content that they're interested in. I also think that palliative medicine is a big education gap in our specialty of neurology and something that we have room to improve on. So, let's start with the basics, Dr Robinson. Palliative medicine has been around for a long time, but this concept of "neuropalliative care" feels relatively new. What is neuropalliative care?

Dr Robinson: That's a great question. Generally, what I would say is palliative care, first of all, is really just a specialty that focuses on trying to improve quality of life for people that have a serious or advanced medical condition. And neuropalliative care is really palliative care for people with neurologic conditions. And you'll see a number of neurologists doing neuropalliative care, but also there are internists as well, and people from other specialties, who focus on patients with neurologic disease and really trying to improve their quality of life.

Dr Jones: Got it. And so, it's really the principles of palliative medicine in a specialty-specific context, which I think is important for us given the prevalence of chronic disease in our specialty. And I was obviously reading through these articles in this issue, and in the really wonderful articles, there are some themes that came up multiple times in various different articles. And one of them was obviously the importance of communication with patients and families. I think, and I'm speaking a little bit from personal experience here, many physicians feel uncomfortable bringing up the discussion of palliative care. And I'm sure that is something that reflects on your practice, too. How often do you have a patient who shows up to clinic and they ask you, why am I here?

Dr Robinson: It happens all the time, because colleagues who are referring patients are nervous to tell them that they're sending them to palliative care. But we try to tell people it's really just to normalize it, to say that the palliative care team is going to see you, they're going to help with some symptoms, they're going to help you think about big picture, and they're going to be sort of an added layer of support to your team. And I think if people approach it from that standpoint, then patients and family members will say, that sounds great, I need a little extra support.

Dr Jones: So, I think most neurologists have a threshold at which they would feel more comfortable having specialty support, having a palliative medicine specialist to help them in symptom management with the patient. For the palliative care that they provide themselves---and we want our subscribers to read this issue and feel more comfortable with delivering some palliative care on their own---how would you encourage them to begin that conversation? How should they initiate that conversation with a patient about working more toward palliative management of symptoms?

Dr Robinson: So, one of the things we recommend is really introducing an approach to palliative care very early in the disease process. So, discussions about big picture and goals of care, discussions about who might help make medical decisions if the person can't make them for themselves. Those kinds of things can be discussed very early on. And in fact, that's palliative care. And then they can talk to patients more about the fact that as the disease progresses, there may be an additional team that can help walk along alongside the neurologist in helping you prepare for what's to come. You know, I think it's very important for patients and family members who feel like you're not abandoning them, but you're adding additional resources. And so, I like the way that we often will suggest to people to say partner or collaborate or bring in extra resources with the palliative care team. I think patients and family members will respond to that.

Dr Jones: Yeah. So, by talking about it early, you kind of, at least, help to avoid that problem of the patient perceiving the introduction of palliative care as the quote-unquote "giving-up problem." Is that right?

Dr Robinson: Correct. Because we also don't want to see people who are just being referred to us for end-of-life care. Palliative care is about much more than that. But if patients will Google palliative care, they may see hospice come up. And so, introducing the concept early and discussing some palliative topics early will allow the patient and family members to think that, okay, this isn't because I'm at the end of life. This is just because my clinician wants to make sure that I have all the bases covered.

Dr Jones: This was also mentioned in several of the articles, the studies that have shown how frequently palliative care is initiated very near the end of life, which is usually, I think, perceived as a missed opportunity, right? To not wait so long to take advantage of what palliative care has to offer.

Dr Robinson: That's correct. And the benefit of palliative care is that oftentimes we work alongside an interdisciplinary team, a team that could be quite helpful to patients and their support systems throughout the course of the disease. So, we have chaplains, we have nurses, we often have other clinicians, advanced practice providers as well, who work with us. We have spiritual advisors as well. And the patients and family members could benefit from some of those resources throughout the course of the disease. Who they might need to meet with may vary depending on what the disease is and how they're doing. But there's definitely some benefit to having a longitudinal relationship with the palliative care team and not just seeking them out at the end of life.

Dr Jones: So- that's very helpful. So, it'll obviously vary according to an individual provider's level of comfort, right, where they're comfortable providing certain palliative management care versus when they need to have some assistance from a specialist. Are there types of care or are there certain thresholds that you say, wow, this patient really should go see a specialist in palliative medicine or neuropalliative care?

Dr Robinson: So, I think that if there are, for instance, refractory symptoms, where the neurologist has been working with a patient for a while trying to manage certain symptoms and they're having some challenges, that person may benefit from being referred to palliative care. If patients are being hospitalized multiple times and frequently, that may suggest that a good serious-illness conversation may be necessary. If there are concerns about long-term artificial nutrition, hydration, or functional and cognitive decline, then some of those patients have benefited from palliative care. Not only the patient, but also the caregiver, because our team really focuses on trying to make sure that we're walking through the course of disease with these patients to ensure that all of the needs are managed both for the patient and the family member.

Dr Jones: Got it. And that's very helpful. And I know that we talk about a lot of these decisions happening in an ideal environment when there's good access to the neurologist and good access to a palliative medicine specialist or even a neuropalliative medicine expert. In your general sense, I- and maybe we'll talk a little bit here in a minute or two about the growing interest in neuropalliative care. But in terms of access, in terms of availability of really, truly neuropalliative expertise, what is your sense of how widely available that is in the US?

Dr Robinson: There's a shortfall of palliative care clinicians in the United States. Everybody who needs a palliative care clinician won't have access to one. And I think your point about the primary palliative care is so important. That's really what we encourage all clinicians, neurologists, neurosurgeons, even, physiatrists, the neurology care team members need to be comfortable with at least initiating some of these conversations. Because, to your point, not everyone's going to have access to a palliative care physician. But by reading issues such as this one, attending some courses---for instance at the American Academy of Neurology meetings---, doing some online trainings, those types of things can be helpful to bring any neurology clinician up to speed who certainly may not have access to a palliative care physician.

Dr Jones: So, I know---and this is in part from my own conversations with patients in my own practice---there are a number of fears that patients have when they have a chronic disease, something that's progressive or something that we don't have a curative treatment for. But I think one of, if not the most common fear among patients is pain, and pain that can't be managed adequately during the course of chronic illness or at the end of life. One of the interesting concepts that I saw mentioned in a few of the articles in this issue is this concept of total pain. So, not just the somatic pain that I think we tend to think of as clinicians and patients tend to think of as patients, but a more holistic definition of pain. Walk us through that and how that relates to palliative medicine.

Dr Robinson: So, Dame Cicely Saunders, the modern-day founder of palliative medicine, really described this biopsychosocial model for pain. And so, you're right, it's not just physical pain, but it's psychological pain, it's spiritual pain. And oftentimes when we are taking care of patients with neurologic disease, they may have some physical pain, but a lot of them are thinking about, for instance, the things that they will miss, which may cause some internal discomfort. Things that they're grieving, the life they thought they were going to have, the person that they used to be, the life they used to have, and what they anticipated their life as being. And some of that can cause people to have not only the spiritual discomfort, but also some psychological discomfort as well. And so, when we're thinking about how to provide rehensive care to these patients, we have to be thinking about all of these aspects.

Dr Jones: It's really helpful. And I guess the more you can identify those, the more you can either help yourself or find the right expert to help the patient. I thought that was an interesting expansion of, of my view of how to think about pain. And another observation that came up in several of the articles was a lack of high-quality clinical trial evidence to inform a lot of the interventions in neuropalliative care. Some of them are common-sense, some of them are based on clinical experience or expert advice. In your own practice, if there was one key knowledge gap to close---in other words, if there was one pivotal trial that we could do to answer one question in helping patients with chronic neurologic disease---what would you say is the main gap?

Dr Robinson: I think the real gap is, who needs palliative care and when? That seems very simple. We have tried things such as automatic triggers for palliative care, for instance, in patients with ALS, or we've said that maybe all glioblastoma patients should see palliative care. But is that true? Are we utilizing the resources in the best possible way that we can? We're not sure. And so, you'll see these practices doing things all a little bit different because we don't have a best practice and it's not really standardized about when people should see palliative care, or why, for instance, they should see palliative care, or who should see palliative care. And I think if we could help drill that down, we can provide some better guidance to our colleagues about when and why and who should see palliative care.

Dr Jones: It's a really kind of a fundamental, foundational, who needs the service to begin with or who needs to care. Okay, that's- that is a big gap. So, one of the interesting concepts that I read- and it was in Benzi Kluger's article on neuropalliative care for patients who have movement disorders. I think it's a concept that is interesting, really, maybe in the management of patients with a lot of different chronic, progressive neurologic diseases. And it's this idea of stealing victories or bringing joy to patients. In other words, not just managing or trying to minimize some of the negative aspects or symptoms of disease, but looking for opportunities to bring something positive to their experience or improving their quality of life. Tell us a little more about that, because I think that's something patients would appreciate, but I think neurologists would appreciate that, too.

Dr Robinson: Dr Kluger loves to talk about sustaining and finding joy in patients who have really serious or advanced neurologic conditions. He likes to talk about stealing victories, which can relate to the fact that patients and their loved ones can find even some benefit despite having a serious or advanced neurologic condition. Neurologists and neurology clinicians also can steal victories in their patients when they notice, for instance, that they've gained a new skill, and they've lost a skill that they used to love because of the advancing disease. And this is just an opportunity for not only the patients and family members, but also the care providers to recognize that in the midst of decline, there are positive things to be found.

Dr Jones: I think it gives patients a sense of maybe reclaimed autonomy when they can say, well, there's maybe nothing I can do to cure this disease in the conventional sense, but I can maybe go on this trip with my family, which has been something I've always wanted to do. Or, I can do these things, so I can attend certain events that I want to. And I think that autonomy and independence aspect of that, I think that I think that was really meaningful and something that I'm going to bring back to my own practice in my care of patients who have ALS, for example. When you think about neuropalliative care---and you've been a leader in this area, Dr Robinson---what do you think the biggest change in neuropalliative care has been over the last few years?

Dr Robinson: I think there's a growing cohort of people who are recognizing that there is some benefit in having dedicated specialists who focus on palliative care for patients with neurologic disease. When I said I was going to do neuropalliative care, somebody asked me, why would a neurologist be interested in palliative care? Over the last decade and a half, we've seen that shift. And not only are our colleagues recognizing the benefit, but also patients and caregivers are. Some are even asking for palliative care. I think people are recognizing that not only having their primary neurologist or neurology clinician taking care of them, they have this extra layer of support, and this extra team really focused on quality-of-life issues can be beneficial.

Dr Jones: So, one of the things that I think you and I have both seen, Dr Robinson, is a growing interest among neurology trainees in palliative medicine. And maybe that's anecdotal, but in my own practice, I've seen more and more trainees express an interest in this. For neurology residents who are interested in this as a component of or maybe a focus of their career, what would you recommend to them? How should they go about this?

Dr Robinson: Yes, it used to be that every neurology resident interested in palliative care would call me or email me or send me a message, but now there are so many that I can't keep up. We're excited about the growing number of people interested in neuropalliative care. What I would say to those people is that you can really try to hone your skills by, for instance, doing a rotation with the palliative care team at your hospital, if there is one. If there isn't one, you might even ask to spend some time with the local hospice agency, which may be helpful to you. If you're attending some of the national meetings---for instance, the American Academy of Neurology meeting---you may want to go to a course and learn a little bit about palliative care. There are a couple that are offered every year. There is an education opportunity for education in palliative and end-of-life care as well. And so, there are a number of resources that you can find in addition to this issue of Continuum as well.

Dr Jones: I find it gratifying that trainees ask about this. And I'm sorry, I think I've probably sent a bunch of trainees your way for advice about this, and you've been incredibly generous with your time and expertise. So, I find it very gratifying that our neurology trainees are interested in this area, because it's an important area of medicine. It's also probably a challenging practice just from the cognitive load and the emotional load of caring for patients who are moving through a progressive illness. What is your thinking about how to have a sustainable career in palliative medicine? What is your approach to that? Is it for everyone?

Dr Robinson: Yeah, the issue with palliative care is that we do see some very challenging situations, and frankly some very sad situations. But I actually love what I do because I think that we're helping patients and their family members during very, very difficult times. I feel like this is why I went to medical school, to try to be there for people when they need me the most. The way that I think about it is, the patients and family members will be going through this anyway. We're trying to help improve their quality of life as they're going through it. And what you might find interesting is that these patients are so grateful. And their loved ones, they're so grateful. Even if they're nearing the end of life, just to have someone who's helping them see that, for instance, the pain could be better, or that they have more resources for the loved ones to be able to take care of them. And so, I think that helps sustain us, realizing that we are really having a positive benefit on the patients and also their family members.

Dr Jones: Well, I think that's a great point to end on. And these are patients who need help. Even if we don't have a curative therapy, they do need support. And that's an important service and a function and an important facet of our profession. So, Dr Robinson, I want to thank you for joining us, and I want to thank you for such a great discussion of neuropalliative care. I learned a lot from our conversation today. I've learned a lot reading the articles and the experts that you put together. This is an important topic. I'm really grateful to you to having assembled this team of expert authors and put together an issue that I think will be really important for not only our junior readers, but also our more experienced subscribers as well.

Dr Robinson: Thank you, Dr Jones, for the opportunity.

Dr Jones: Again, we've been speaking with Dr Maisha Robinson, Guest Editor of Continuum's most recent issue and first issue fully dedicated to neuropalliative care. 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.

Dystrophinopathies are heritable muscle disorders caused by pathogenic variants in the DMD gene, leading to progressive muscle breakdown, proximal weakness, cardiomyopathy, and respiratory failure. Diagnosis and management are evolving areas of neuromuscular neurology.

In this episode, Kait Nevel, MD, speaks with Divya Jayaraman, MD, PhD, an author of the article "Dystrophinopathies" in the Continuum® October 2025 Muscle and Neuromuscular Junction Disorders issue.

Dr. Nevel is a Continuum® Audio interviewer and a neurologist and neuro-oncologist at Indiana University School of Medicine in Indianapolis, Indiana.

Dr. Jayaraman is an assistant professor of neurology and pediatrics in the division of child neurology at the Columbia University Irving Medical Center in New York, New York.

Additional Resources

Read the article: Dystrophinopathies

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: @IUneurodocmom

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 Nevel: Hello, this is Dr Kate Nevel. Today I'm interviewing Dr Divya Jayaraman about her article on dystrophinopathies, which she wrote with Dr Partha Ghosh. This article appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Divya, welcome to the podcast, and please introduce yourself to the audience.

Dr Jayaraman: Thank you so much, Dr Nevel. My name is Divya, and I am an assistant professor of Neurology and Pediatrics at Columbia University Irving Medical Center, and also an attending physician in the Pediatric Neuromuscular program there. In that capacity, I see patients with pediatric neuromuscular disorders and also some general pediatric neurology patients and also do research, primarily clinical research and clinical trials on pediatric neuromuscular disorders.

Dr Nevel: Wonderful. Thank you for sharing that background with us. To set us on the same page for our discussion, before we get into some more details of the article, perhaps, could you start with some definitions? What comprises the dystrophinopathies? What are some of the core features?

Dr Jayaraman: So, the dystrophinopathies, I like that term because it is a smaller subset from the muscular dystrophies. The dystrophinopathies are a spectrum of clinical phenotypes that are all associated with mutations in the DMD gene on chromosome X. So, that includes DMD---or, Duchenne muscular dystrophy---, Becker muscular dystrophy, intermediate muscular dystrophy (which falls in between the two), dilated cardiomyopathy, asymptomatic hyperCKemia, and manifesting female carriers. In terms of the core features of these conditions, so, there's some variability, weakness being prominent in Duchenne and also Becker. The asymptomatic hyperCKemia, on the other hand, may have minimal symptoms and might be found incidentally by just having a high CK on their labs. They all will have some degree of elevated CK. The dilated cardiomyopathy patients, and also the Becker patients to a lesser degree, will have cardiac involvement out of proportion to skeletal muscle involvement, and then the manifesting carriers likewise can have elevated CK and prominent cardiac involvement as well as some milder weakness.

Dr Nevel: Now that we have some definitions, for the practicing neurologists out there, what do you think is the most important takeaway from your article about the dystrophinopathies?

Dr Jayaraman: I like this question because it suggests that there's something that, really, any neurologist could do to help us pick up these patients sooner. And the big takeaway I want everyone to get from this is to check the CK, or creatine kinase, level. It's a simple, cheap, easy test that anyone can order, and it really helps us a lot in terms of setting the patient on the diagnostic odyssey. And in terms of whom you should be thinking about checking a CK in, obviously patients who present with some of the classic clinical features of Duchenne muscular dystrophy. This would include young boys who have toe walking, as they're presenting, sign; or motor delayed, delayed walking. They may have calf hypertrophy, which is what we say nowadays. You might have seen calf pseudohypertrophy in your neurology textbooks, but we just say calf hypertrophy now. Or patients can often have a Gowers sign or Gowers maneuver, which is named after a person called Gowers who described this phenomenon where the child will basically turn over and use their hands on the floor to stand up, usually with a wide-based gait, and then they'll sort of march their hands up their legs. That's the sort of classic Gowers maneuver. There are modified versions of that as well.

So, if anyone presents with this classic presentation, for sure the best first step is to check a CK. But I would also think about checking a CK for some atypical cases. For example, any boy with any kind of motor or speech delay for whom you might not necessarily be thinking about a muscle disorder, it's always good practice to check a CK. Even a boy with autism for whom you may not get a good clinical exam. This patient might present to a general pediatric neurology clinic. I always check a CK in those patients, and you'll pick up a lot of cases that way. For the adult folks in particular, the adult neurologist, a female patient could show up in your clinic with asymptomatic hyperCKemia. And I think it's an important differential to think about for them because this could have implications not just for their own cardiac risks, but also for their family planning.

Dr Nevel: So, tell us a little bit more about the timing of diagnosis. Biggest takeaway: check a CK if this is anywhere on your radar, even if somewhat of an atypical case. Why is it so important to get kiddos started on that diagnostic odyssey, as you called it, early?

Dr Jayaraman: This is especially important for kids because if they especially get a Duchenne muscular dystrophy diagnosis, you might be making them eligible for treatments that we've had for some time, and also treatments that were not available earlier that hinge on making that diagnosis. So, for example, people may be skeptical about steroids, but there's population data to suggest that initiation and implementation of steroids could delay the onset of loss of ambulation as much as three years. So, you don't want to deprive patients of the chance to get that. And then all the newer emerging therapies---which we'll be talking about later, I'm sure---require a Duchenne muscular dystrophy diagnosis. So, that's why it's so important to check a CK, have this on your radar, and then get them to a good specialist.

Dr Nevel: I know that you alluded already, or shared a few of the kind of exam paroles or findings among patients with dystrophinopathy. But could you share with us a little bit more how you approach these patients in the clinic who are presenting with muscle weakness, perhaps? And how do you approach this or think about this in terms of ways to potentially differentiate between a dystrophinopathy versus another cause of motor weakness or delay?

Dr Jayaraman: It's helpful to think through the neuraxis and what kinds of disorders can present along that neuraxis. A major differential that I'm always thinking about when I'm seeing a child with proximal weakness is spinal muscular atrophy, which is a genetic anterior horn cell disorder that can also present in this age group. And some of the key differences there would be things like reflexes. So, you should have dropped reflexes in spinal muscular atrophy. In DMD, surprisingly, they might have preserved Achilles reflexes even if their patellar reflexes are lost. It may only be much later that they go on to lose their Achilles reflex. So, if you can get an Achilles reflex, that's quite reassuring, and if you cannot, then you need to be thinking about spinal muscular atrophy. They can both have low muscle tone and can present quite similarly, including with proximal weakness, and can even have neck flexion weakness. So, this is an important distinction to make. The reason for that is, obviously there are treatments for both conditions, but for spinal muscular atrophy, timing is very, very important. Time is motor neurons, so the sooner you make that diagnosis the better.

Other considerations would be the congenital muscular dystrophies. So, for those that they tend to present a lot younger, like in infancy or very early on, and they can have much, much higher CKS in that age range than a comparable Duchenne or Becker muscular dystrophy patient. They can also have other involvement of the central nervous system that you wouldn't see in the dystrophinopathies, for example. My mnemonic for the congenital muscular dystrophies is muscle-eye-brain disease, which is one of the subtypes. So, you think about muscle involvement, eye involvement, and brain involvement. So, they need an ophthalmology valve. They can have brain malformations, which you typically don't see in the dystrophinopathies. I think those are some of the major considerations that I have. Obviously, it's always good to think about the rest of the neuraxis as well. Like, could this be a central nervous system process? Do they have upper motor neuron signs? But that's just using all of your exam tools as a neurologist.

Dr Nevel: Yeah, absolutely. So, let's say you have a patient in clinic and you suspect they may have a dystrophinopathy. What is your next diagnostic step after your exam? Maybe you have an elevated CK and you've met with the patient. What comes next?

Dr Jayaraman: Great question. So, after the CK, my next step is to go to genetics. And this is a bit of a change in practice over time. In the past we would go from the CK to the muscle biopsy before genetic testing was standard. And I think now, especially in kids, we want to try and spare them invasive procedures where possible. So, genetic testing would be the next step. There are a few no-charge, sponsored testing programs for the dystrophinopathies and also for some of the differential diagnosis that I mentioned. And I think we'll be including links to websites for all of these in the final version of the published article. So, those are a good starting point for a genetic workup. It's really important to know that, you know, deletions and duplications are a very common type of mutation in the DMD gene. And so, if you just do a very broad testing, like whole exome, you might miss some of those duplications and deletions. And it's important to include both checking for duplications and deletions, and also making sure that the DMD gene is sequenced. So always look at whatever genetic test you're ordering and making sure that it's actually going to do what you want it to do.

After genetics, I think that the sort of natural question is, what if things are not clear after the genetics for some reason? We still use biopsy in this day and age, but we save it for those cases where it's not entirely clear or maybe the phenotype is a little bit discordant from the genotype. So, for mutations that disrupt the reading frame, those tend to cause Duchenne muscular dystrophy, whereas mutations that preserve the reading frame tend to cause Becker muscular dystrophy. There are some important exceptions to this, which is where muscle biopsy can be especially helpful in sorting it out.

So, for example, there are some early mutations early in the DMD gene where, basically, they find an alternate start codon or an initiation codon to continue with transcription and translation. So, you end up forming a largely functional, somewhat truncated protein that gives you more of a milder Becker phenotype. On the other hand, you can have some non-frameshift or inframe mutations that preserve the reading frame, but because they disrupt a very key domain in the protein that's really crucial for its function, you can actually end up with a much more severe Duchennelike phenotype. So, for these sorts of cases, you might know a priori you're dealing with them, but might just be a child who is who you think has DMD has a mutation that's showed up on testing. There isn't enough in the literature to point you one way or another, but they look maybe a little milder than you would expect. That would be a good kid to do a biopsy in because there are treatment decisions that hinge on this. There are treatments that are only for Duchenne that someone with a milder phenotype would not be eligible for.

Dr Nevel: So, that kind of stepwise approach, but maybe not all kids need a muscle biopsy is what I'm hearing from you. If it's a mutation that's been well-described in the literature to be fitting with Duchenne, for example.

Dr Jayaraman: Absolutely.

Dr Nevel: So, after you confirm the diagnosis through genetic testing---and let's say, you know, whether or not you do a muscle biopsy or not, after you know the diagnosis is a dystrophinopathy---how do you counsel the families and your patients? What are the most important points to relay to families, especially in that initial phase where the diagnosis is being made?

Dr Jayaraman: This is a lot of what we do in pediatric neurology in general, right? So, I actually picked up this approach from the pediatric hematology oncology specialists at Boston Children's. They had this concept of a day-zero conversation, which is the day that you disclose the life-changing diagnosis or potentially, at some point, terminal diagnosis to a family. And some of the key components of that are a not beating around the bush, telling them what the diagnosis is, and then letting them have whatever emotional response they're going to have in the moment. And you may not get much further than that, but honestly, you want them to take away, this is what my child has. I did not do anything to cause this, nor could I have done anything to prevent this. Because often for these genetic conditions, there's a lot of guilt, a lot of parental guilt. So, you want to try and assuage that as much as possible. And then to know that they're not going to be alone on this journey; that, you know, they don't have to have it all figured out right then, but we can always come back and answer any questions they have. There's going to be a whole team of specialists. We're going to help the family and the kid manage this condition. Those are sort of my big takeaways that I want them to get.

Dr Nevel: Right. And that segues into my next question, which is, who is part of that team? I know that these teams that help take care of people with dystrophinopathies and other muscle disorders can be very large teams that span multiple specialists. Can you talk a little bit more about that for this group of patients?

Dr Jayaraman: Of course. So, the neuromuscular neurologist, really, our role is in coordinating the diagnosis, the initiation of any disease-specific treatments, and coordinating care with a whole group of specialists. So, we're sort of at the center of that, but everyone else is equally important. So, the other specialists include physical therapists; occupational therapists; rehab doctors or physiatrists; orthotists who help with all of the many braces and other devices that they might need, wheelchairs; pulmonology, of course, for managing the respiratory manifestations of this. It becomes increasingly important over time, and they are involved early on to help monitor for impending respiratory problems. Cardiac manifestations, this is huge and something that you should be thinking about even for your female carriers, the mother of the patient you're seeing in the clinic, or your patient who comes to adult clinic with asymptomatic hyperCKemia. if you end up making a diagnosis of DMD carrier for those patients, or if you make a Becker diagnosis, the cardiac surveillance is even more important because the cardiac involvement can be out of proportion to the skeletal muscle weakness. And of course, extremely important for the Duchenne patients as well.

Endocrinologists are hugely important because in the course of treating patients with steroids, we end up giving them a lot of iatrogenic endocrinologic complications. Like they might have delayed puberty, they might have loss of growth, of height; and of course metabolic syndrome. So, endocrinology is hugely important. They're also important in managing things like fracture prevention, osteoporosis, prescribing bisphosphonates if necessary. Nutrition and GI are also important, not just later on when they might need assistance to take in nutrition, whether that's through tube feeds, but also earlier on when we're trying to manage the weight. Orthopedics, of course, for the various orthopedic complications that patients develop. And then finally, a word must be said for social work and behavioral and mental health specialists, because a lot of this patient population has a lot of mental health challenges as well.

Dr Nevel: After you give the diagnosis, you've counseled the patient and families and you've had those kind of initial phase discussions, the day-zero discussion, when you start getting into discussions or thoughts about management, disease-specific medication. But what are the main categories of the treatment options, and maybe how do you kind of approach deciding between treatment options for your patients?

Dr Jayaraman: So, there are two broad categories that I like to think about. So, one is the oral corticosteroids and oral histone deacetylase, or HDAC inhibitors, which share the common characteristic that they are non-mutation specific. And within corticosteroids, patients now have a choice between just Prednisone or Prednisolone, or Deflazacort or Vermilion. The oral HDAC inhibitors are newly FDA-approved as a nonsteroidal therapy in addition to corticosteroids in DMD patients above six years of age. I would say we're in the early phase of adoption of this in clinical practice. And then the other big category of treatment options would be the genetic therapies as a broad bucket, and this would include gene therapy or gene replacement therapy, of which the most famous is the microdystrophin gene therapy that was FDA-approved first on an accelerated approval basis for ages four to eight, and then a full approval in that age group as well as an accelerated approval for all comers, essentially, with DMD. This is obviously controversial. Different centers approach this a bit differently. I think our practice at our site has been to focus on the ambulatory population, just thinking about risk versus benefit, because the risks are not insignificant. So really this is something that should be done by experienced sites that have the bandwidth and the wherewithal to counsel patients through all of this and to manage complications as they arise with regular monitoring.

And then another class that falls within this broader category would be the Exon-skipping therapies. So as the name suggests, they are oligonucleotides that cause an Exon to be skipped. The idea is, if there is a mutation in a particular Exon that causes a frame shift, and there's an adjacent Exon that you can force skipping of, then the resulting protein, when you splice the two ends together, will actually allow restoration of the reading frame. I think the picture I want to paint is that there's a wide range of options that we present to families, not all of which everyone will be eligible for. And they all have different risk profiles. And I really think the choice of a particular therapy has to be a risk-benefit decision and a shared decision-making process between the physician and the family.

Dr Nevel: What is going on in research in this area? And what do you think will be the next big breakthrough? I know before we started the recording you had mentioned that there's a lot of things going on that are exciting. And so, I'm looking forward to hearing more.

Dr Jayaraman: Of course. So, I'll be as quick as I can with this. But I mentioned that next-generation Exon skipping therapies, I think the hope is that they will be better at delivering the Exon skipping to the target tissue and cells and that they might be more efficacious. I'm also excited about next-generation gene therapies that might target muscle more specifically and hopefully reduce the off-target effects, or combination use of gene therapies with other immunosuppressive regimens to improve the safety profile and maybe someday allow redosing, which we cannot do currently. Or potentially targeting the satellite cells, which are the muscle stem cells, again, to improve the long term durability of these genetic therapies.

Dr Nevel: That's great, thank you for sharing. Thank you so much for talking to me today about your article. I really enjoyed learning more about the dystrophinopathies. Today I've been interviewing Dr Divya Jayaraman about her article on the dystrophinopathies, which she wrote with Dr Partha Ghosh. This article appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Please be sure to check out the Continuum Audio episodes from this and other issues. Also, please read the Continuum articles for more details than what we were able to get to today during our discussion. Thank you, as always, so much to the listeners for joining us today, and thank you, Divya, for sharing all of your knowledge with us today.

Dr Jayaraman: Thank you so much for having me on the podcast.

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.

Myotonic dystrophies (DM), in addition to muscle weakness and myotonia, are associated with broad and variable multiorgan involvement. Neurologists need to recognize DM to ensure prompt diagnosis, effective symptom management, and prevention of life-threatening events.

In this episode, Casey Albin, MD, speaks with Paloma Gonzalez Perez, MD, PhD, author of the article "Myotonic Dystrophy" in the Continuum® October 2025 Muscle and Neuromuscular Junction Disorders 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. Gonzalez Perez is an assistant professor at Harvard Medical School in Boston, Massachusetts.

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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 everyone, this is Dr Casey Albin. Today I'm interviewing Dr Paloma Gonzalez-Perez about her article on myotonic dystrophy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Welcome to the podcast, Dr Gonzalez-Perez. I'd love for you to introduce yourself to our listeners.

Dr Gonzalez-Perez: Thank you very much for the invitation. My name is Paloma Gonzalez-Perez. I'm a neuromuscular neurologist at Massachusetts General Hospital in Boston since 2018. And I'm originally from Spain. I did residency there and also here in Iowa City. And then I did the neuromuscular fellowship here at Mass General Brigham, and then I stayed here as a faculty. So, my focus is myopathies, and more specifically muscular dystrophies, and more particularly myotonic dystrophy, which is what we are going to talk today.

Dr Albin: Wonderful. And this is a really fantastic tour de force article about myotonic dystrophy. And in reading your article, it really did stand out to me that these myotonic dystrophies are probably under-recognized. And so, I was hoping that, just to start, you could tell us a little bit about, what is a myotonic dystrophy, and how should we sort of situate that within the larger context of all muscular dystrophies?

Dr Gonzalez-Perez: Yes, so muscular dystrophies, we have many of them, right? And mostly affecting the skeletal muscle. And basically, the definition of muscular dystrophy is a genetic or inherited muscle disease that causes a progressive muscle weakness. And also, in the muscle biopsies of patients with muscular dystrophies, we see some fractures that are characteristic of this category of muscle diseases, such as, for example, the nuclei of the muscle fibers are in the center---that's what we call internal nuclei---or maybe fat infiltration or increased connective tissue or a variability in the size of the muscle fibers. So, now in the last few years, the genetic testing is more accessible to us. So, we don't need muscle biopsies all the time to diagnose patients with muscular dystrophy. So many times, we go directly to genetic testing. And this is basically the category of muscular dystrophies.

Myotonic dystrophy is very fascinating muscular dystrophy in the sense that many times not only affect the skeletal muscle, but other organs can be affected. And it is true that other muscular dystrophies can affect other organs such as, for example, the brain and the heart, which is something that we always have in mind as a clinician to make sure this muscular dystrophy affect the heart or affect the brain, because it is important for patient care. But myotonic dystrophy actually can affect any organ in the body. I think it is one of these muscular dystrophies in which there is a multisystem involvement of the body. So, the immune, immunological system can be affected and the endocrine system can be affected, the GI system can be affected. In addition to, obviously, to the brain, to the heart, to the skeletal muscle. And sometimes that is why it is under-recognized because of course, if there is a very severe phenotype, maybe the patient comes very easily to a neurologist who is very familiar with myotonic dystrophy. But if the phenotype is a little bit milder, and maybe it doesn't affect much the skeletal muscle. So, these patients probably are in the care of other specialists, such as, for example cardiology or GI doctors, and obviously these specialists are not really aware of this muscular dystrophy. So, I think it is a complex disease because it is very variable in phenotype, can affect many organs and can be also mild.

Dr Albin: That is fantastic. That is just a wonderful overview of, really, muscular dystrophy. One of the things I was really curious about: the name includes myotonia. Is myotonia, like, always present, or is that a little bit misleading?

Dr Gonzalez-Perez: Yeah. I would say that it is a little bit misleading---maybe not too much in myotonic dystrophy type one, because it is true that in adults with myotonic dystrophy type one, many times they have the myotonia, but not many times they complain about the myotonia. This is the thing. So, it is a diagnostic clue that we have at bedside when we ask the patient, for example, to squeeze the hands and then release and we see the myotonia there. And then, obviously, this can actually give you the diagnosis at bedside, but the patients usually don't come to the clinic complaining of this myotonia, which is delaying the relaxation of the muscles. Sometimes they don't- they are not bothered by that. They don't need treatment for that. But it is a very important clue at bedside. I have to say, adults, myotonic dystrophy type one, because the congenital myotonic dystrophy type one you don't see myotonia, clinical myotonia. These babies, right, are born with severe muscle weakness and we don't see myotonia. And then myotonic dystrophy type two, many patients don't have clinical myotonia. And then, you know, the absence of myotonia, the absence of this delay in the muscle relaxation doesn't rule out a myotonic dystrophy, and especially doesn't rule out a myotonic dystrophy type two.

Dr Albin: Fantastic. So probably is going to be a feature of the adult-onset type one. May or may not be present in type two. And then the congenital forum where children are presenting as infants, they're not going to tell you that, oh, I have delayed relaxation. That's not going to be part of that.

Dr Gonzalez-Perez: Exactly.

Dr Albin: This is one of those things that I think, unless you're in neuromuscular clinic, you might not think to ask people about. Maybe the patient isn't actually saying, oh, I have this delayed reaction. How do you get them to give you that history? Like, what are the questions that you ask?

Dr Gonzalez-Perez: Sometimes I will say, do your hands get locked? You know, this could be the first question that they noticed something there, and then they can give you maybe the clue. But actually, it's the exam more than the question. I will say it's more do the exam and, you know, intentionally test for myotonia. And you test for spontaneous myotonia and percussion myotonia. So spontaneous myotonia, we tell the patient to squeeze the hands very strongly and then open the hands quickly. And then if they cannot open the hands quickly, this is a delay in muscle relaxation. We call it grip myotonia, spontaneous grip myotonia. Or sometimes close your eyes very, very, very strongly and then open the eyes quickly. And if they have this delay in the eye opening, we call it eyelid myotonia. This eye is spontaneous myotonia, you don't touch the patient and you don't use your hammer yet. And then if we don't find anything, we go to the hammer. We use our reflex hammer, and then we try to test for percussion myotonia. And sometimes we with the reflect hammer, we tap the thinner eminence of the hand, and we can see that you tap, there is a contraction, and then the thumb goes up and then takes a while to go down again. It is a delay in the relaxation of the thinner eminence muscles. Or sometimes in the posterior aspect of the forearm, if we tap the extensor digitorum communis muscle. Again, so, there is a contraction of that muscle, the fingers go up and then take a while to go down. It is also a perfusion myotonia of the extensor digitorum communis muscle. Sometimes people do it even in the tongue. I don't do that because could be very painful. But you can, you know, use a tongue depressor and put it in the tongue, and you tap the tongue depressor and sometimes there is contraction of the tongue, which can be very painful. I don't do it. So- but this is the perfusion myotonia, that can give you also a clue.

Dr Albin: That's fantastic. I think this is one of the most memorable things that I saw in pediatric neurology. I remember very distinctly a kid coming in, and then us also examining the mother and having that delayed relaxation. And just one of those really great neurologic exams, those little findings to tuck away to really make a diagnosis, recognizing that not all patients with muscular dystrophy or myotonic dystrophy will have that finding. But so beautiful. And I think that's a really great explanation. And I will also direct our listeners, if you are a Continuum subscriber, she has some really wonderful videos in her article from the EMG sounds of this, which is another layer of being able to appreciate the physical exam finding. One of the things that I was really struck by, and that you've already mentioned, is that there is this really incredible spectrum of disease. That some of the myotonic dystrophy patients may barely have any skeletal involvement, and the ones with congenital myotonic dystrophy may have significant mortality even within the first year of life. Given how many subtypes of this disease there are in that varied presentation, let's just walk through sort of starting with congenital myotonic dystrophy. What are some of the clues to that diagnosis?

Dr Gonzalez-Perez: Yes. So, you know, these babies with congenital myotonic dystrophy, actually when they are born, the phenotype is what we call a floppy baby. Floppy baby syndrome right? So, they are very weak. There is generalized weakness, including the swallowing muscles and the respiratory muscles. So sometimes, you know, these patients, these babies have to be intubated---to have a feeling tube, right---to survive. So, that's why the mortality can be so high during the first year of life, because obviously swallowing and breathing is affected because the muscle, those muscles, are also affected. So, one of the clues, actually- you know, sometimes these patients may have, like, a tented mouth, which could be a sign of congenital myotonic dystrophy. The differential diagnosis for a floppy baby syndrome is very broad and can be caused by central nervous system problems or peripheral nervous system problems. So, it's very broad, but maybe the tented mouth can be a clue to suspect the congenital myotonic dystrophy type one. And I will say that also, examine the mom. Because sometimes the mom is not diagnosed with myotonic dystrophy, and as simple as going into the mom who is an adult and can have already the myotonia that we talked about before and maybe, you know, try to do, like, a grip myotonia, eyelid myotonia, or use your reflex hammer and tap a few muscles, and then can give you the diagnosis of potential congenital myotonic dystrophy in the baby. And I have to say that there is no newborn screening for myotonic dystrophy type one yet. Maybe in the future it's going to be, but not at this time. So, I'm pretty sure that pediatricians probably rule out other things before unless there is distinctive mouth or unless the mom is affected.

Dr Albin: Great pearls about how to take it to the bedside and try to look for that hereditary nature of this. Let's move up a little bit in sort of the childhood and adolescent onset. What are some of the clues that you're seeing for those children who come to presentation a bit later in life, but still probably more likely to be seen in pediatric clinic?

Dr Gonzalez-Perez: Yes. So, the childhood and adolescent onset in myotonic dystrophy type one, it is interesting because the skeletal muscle may not be the organ that is more affected or the organ that impacts the life of the patient and the family of the patient. So, it's- the phenotype is predominantly focused on behavioral and intellectual disabilities. They may develop at some point myotonia, and they may develop also muscle weakness. But for the most part they are ambulatory. They eat by themselves, they breathe okay, and there is not too much problem with the skeletal muscle, but mostly with behavioral problems such as, for example, ADHD or intellectual disability. So, they may need some help in school and things like that. So, it is more, I will say, a central nervous system phenotype at this age.

Dr Albin: Yeah, I love that that this is- to me, this was part of the complexity of this was that, while we call it myotonic dystrophy, the muscle part of this disease really may not be the main issue for the patients and their families. And that we're actually looking for something that involves the central nervous system, endocrine system, GI system. And knowing that maybe the muscle is not the main problem here, why is it so important that these patients actually get the correct diagnosis?

Dr Gonzalez-Perez: Exactly. So, it is very important. And I always think about the heart. You know, the heart can be affected in the sense like the rhythm of the heart can be abnormal. And sometimes, you know, the patient doesn't have symptoms. But it's important to detect this because, you know, an abnormal rhythm in the heart can cause sudden death. So that's why it's so important. The diagnosis of this muscular dystrophy at this time, and of course in the future when we have a treatment, right, will be very important also to have the diagnosis, the earlier is the better, because probably the treatment is going to be more effective in the earlier stages than in the later stages. But I will say that right now making sure that the heart is in a good shape and the patient has a cardiologist on board if they have myotonic dystrophy. And also, you know, there are consensus-based care recommendations for myotonic dystrophy type one for the pediatric population and the adult population, and also for myotonic dystrophy type two for the adult population, that are published. And I also included in the chapter because they are very important to look for things that maybe the patient it doesn't complain about, but it's important to look for them in the case that we can prevent some future complications.

Dr Albin: Absolutely. I really love that. This is a systemic disease that has multiple manifestations, and while the skeletal muscle involvement may or may not be causing problems, we really do have to get the right diagnosis, particularly as it impacts the heart and preventing fatal cardiac arrhythmias. Up to this point, we've mostly been talking about type one myotonic dystrophy. What sets type two apart?

Dr Gonzalez-Perez: Yes. So, type two is, I think, even more under-recognized, probably because the phenotype is even more variable than type one and can be much milder in some sense. We are not aware of, you know, like, there are some pediatric cases that have been reported, but for the most part it's an adult muscular dystrophy, type two. So, we diagnose these muscular dystrophies usually in the forties, fifties. The thing is, like, sometimes patients actually may only have muscle pain. And not even muscle weakness. And so… and actually some of these patients may receive a diagnosis of fibromyalgia, for example, just because of the muscle pain. And it is more difficult to obtain myotonia on exam, actually. I think there is a delay in diagnosis in this population, and also the multisystem involvement, which is present but maybe even more variable than that in type one. And we have less patients, so we understand less the phenotype of these patients. But for the most part it is, I think, more under-recognized in the type one.

Dr Albin: Fascinating. So again, could have pretty mild skeletal involvement and may just have cramps and muscle pain. So, you have to be really sort of mindful of keeping this on the differential for people with multiple areas of pain in the muscles. When is this suspected? Are you usually sending genetic tests to confirm? How do we get to the diagnosis?

Dr Gonzalez-Perez: In the history, in the past medical history, you have probably- sometimes you have the clue. For example, a patient with muscle pain, imagine like for example a forty-eight-year-old male with muscle pain comes to the clinic, and then he tells you that he had cataract surgery at the age of twenty. And then you see a CK that is a little bit more elevated than usual. And then at that time I will go for genetic testing right away, for my myotonic dystrophy type two. Because of the muscle pain is so characteristic of myotonic dystrophy type two, and the multiorgan involvement sometimes includes a very early cataracts, the same as in type one. But the muscle pain is much more typical for type two than for type one. So, that's why I will go, in this specific scenario to type two.

If I still think that my alternative dystrophic type two is a possibility, although I'm not totally convinced if it is or not, I usually go for EMG. I mean, if you don't see myotonia at the side, maybe with the EMG and the needle in the muscle, you can see this electrical myotonia that I have some videos in the chapter to see if there is this motorcycle sound of the electrical discharges from the muscle that are consistent with- they can be seen in myotonic dystrophy type two. They are not as specific, but can be seen in myotonic dystrophy type two. So if I have a patient with muscle pain and then I see this electrical myotonia on EMG, so then I will go then next to a genetic testing for myotonic dystrophy type two. Sometimes if there are some family history, it gives you also clues about the possibility of myotonic dystrophy in general, but also myotonic dystrophy type two. Myotonic dystrophy type two, usually the muscle weakness, when it is present, it's more proximal. While in myotonic dystrophy type one it's more distal. So, this also, you know, helps you to differentiate. But specifically in this myotonic dystrophy area, I think the past medical history helps you a lot and the family history helps you too. If you see an autosomal dominant inheritance of muscle or other organ problems, you suspect this type of muscular dystrophy. And I have low threshold to test for this if it is possible because, as we mentioned before, knowing what the patient has helps a lot in their care.

Dr Albin: Absolutely. I love that. Spoken like a true neurologist, using the history, the physical, thinking about the family history, using EMG as an extension of our physical to really find and clinch that diagnosis, and then using genetic tests as a confirmation to get to the right answer. I love the mention of early-onset cataract. Are there any other things that pop into your mind or when you're reading the chart and you look at the medical history that, like cataracts, stand out to you as, this really clues me into myotonic dystrophy?

Dr Gonzalez-Perez: Yes. So, for example, a pacemaker at early age---in their thirties, in their forties---; a family history of sudden death---for example, having a surgery for whatever reason, having a surgery like for example, surgery for appendicitis and have complications from general anesthesia, like a delay in the awakening from the general anesthesia because patients with melatonin dystrophy are very sensitive to anesthetics and also any sedative medication. So, that gives me a clue that, you know, patients with melatonin dystrophy can have this type of history. I think that those will be the main ones. Sleep apnea is very common, but we know it's also common in the general population. So, maybe sometimes, actually, we may think too much and it is, you know, normal for the general population, more frequent in the general population. But, yeah. And daytime sleepiness that can be caused by the sleep apnea. But sometimes these patients have profound daytime sleepiness. Like, they really complain about that. You know, I need to nap very often during the day because of this. Those features, I think, increase my suspicion for myotonic dystrophy.

Dr Albin: Fantastic. So, in the brief time that we have left, I'd love for you to tell us a little bit about what's on the horizon for treatment for these patients.

Dr Gonzalez-Perez: Yes, we have exciting preclinical and clinical trials in myotonic dystrophy type one; not yet in myotonic dystrophy type two. And these trials try to target the genetic defect at the level of the DNA or at the level of RNA. So, we have small molecules in clinical trials. We have also some antisense oligonucleotides in clinical trials. We have some small interfering RNAs in clinical trials. And then the CRISPR, which is another new technology, that is trying, you know, to repair this long function that causes myotonic dystrophy type one. And the important thing is, like, once we know what works for myotonic dystrophy type one, we may have good clues also for myotonic dystrophy type two because they share the common pathogenic mechanism.

Dr Albin: Fantastic. So, it sounds like there's some genetic therapy in the pipeline. There is some small molecule treatments that are going to be available. So, really an exciting time. There's going to be a lot of changes coming forward to these patients. Again, today I've been interviewing Dr Paloma Gonzalez-Perez about her article on myotonic dystrophy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Be sure to check out Continuum Audio episodes from this and other issues, and thank you so much to our listeners for joining again today.

Dr Gonzalez-Perez: Thank you very much for the invitation. My pleasure.

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