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
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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.