End-of-Life Care and Hospice With Dr. Claudia Chou
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. Knox 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
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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 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.
