Going Beyond Medicine

In the last episode of the podcast, we heard from several attendees of the 2025 NANOS meeting in Tucson, Arizona. One meeting session in particular resonated with many attendees, sparking, deep, personal reflections on their approach to this important topic. Co-created and co-led by Drs. Melissa Ko and Guy Jirawuthiworavong,  the sessions was titled The Science and Clinical Practice of Supporting Patients Through Vision Loss: Therapy When There is No Cure.

This unique symposium tackled a question nearly every physician has faced: what to do when you’ve done all you can to heal, but can do no more?

Today, we’re taking a deep dive into an important conversation—one that helps put things into perspective and challenges us to think beyond tests, prescriptions, and procedures, and remember the full person behind the patient. 

Dr. Melissa Ko

Dr. Guy Jirawuthiworavong

Dr. Agnes Wong

Dr. Benzi Kluger

The International Neuropalliative Care Society

Palliative Care to support the needs of Adults with Neurological Disease

Clinical Guidance in Neuropalliative Care  - A position statement from the Americal Academy of Neurology

Transcript

SPEAKER_02 0:01

This is Out of the Blind Spot. I'm neuroophthalmologist Oreophe Adachina. The views and opinions I express in this podcast are purely mine alone.

SPEAKER_00 0:15

The therapy when there is no cure symposium, where we talked about the science and practice of supporting our patients with vision loss, and also supporting ourselves when we have patients who are having distress about their vision loss, was absolutely amazing. I can't remember a prior nano symposium where people were tearful because they were so moved.

SPEAKER_02 0:38

For many of us, vision is felt to be our most important and vital sense. So much so that many people say they'd rather face death than lose their sight. It's not just about seeing, it's about independence, identity, and a deep connection to the world around us. Neuroophthalmologists frequently care for patients with life and vision-threatening diseases. We're trained to address the medical and surgical challenges of vision loss. But what about the human side? The fear, anxiety, and life-altering impact that vision loss brings to patients and their families. That part is harder, but no less important. And all too often, it goes unspoken. In the last episode of this podcast, we heard from several attendees of the 2025 NAMLS meeting in Tucson, Arizona. One meeting session, in particular, resonated with many attendees, sparking deep personal reflections on their approach to this important topic. Co-created and co-led by Drs. Melissa Ko and Guy Jerwoofi Warovong, the session was titled The Science and Clinical Practice of Supporting Patients Through Vision Loss. Therapy when there is no cure. This unique symposium tackled the question nearly every physician has faced. What to do when you've done all you can to heal, but can do no more.

SPEAKER_03 2:13

And I realized that there were times that one's spiritual self needed to be cared for, and that's really not part of the conversation typically with your doctors or with the health system that you're trying to navigate through. And let's be clear, we're not talking about religion. We're talking about the inner self, and that expression can be different for different people.

SPEAKER_02 2:38

Today, we're taking a deep dive into an important conversation. One that helps put things into perspective and challenges us to think beyond tests, prescriptions, and procedures, and remember the full person behind each patient. This is Out of the Blind Spot, the podcast where we discuss all things neuroophthalmology, a specialty of medicine that connects the brain to the eye, and to the world for all to see. We begin our conversation with Dr. Melissa Ko and are joined later in the episode by her session co-moderator, Dr. Guy Jirawuthiwaravong. I'm happy to be joined by Dr. Melissa Ko, who is one of the co-moderators of the very well-received NANOS 2025 Symposium, The Science and Clinical Practice of Supporting Patients Through Vision Loss, Therapy When There Is No Cure. Thanks for joining me, Dr. Ko and welcome to Out of the Blind Spot.

SPEAKER_03 3:47

Great to be here.

SPEAKER_02 3:49

I'd like to get a bit of background from you about you as a neuroophthalmologist, and then we'll dive into how you developed this really important and poignant nanosymposium.

SPEAKER_03 4:03

Sure. I am a neuroophthalmologist based at Indiana University in Indianapolis, Indiana. And I've been here for about six years at this point. I'm primarily stationed within the neurology department, but have a joint appointment with the ophthalmology group as well.

SPEAKER_02 4:23

Awesome. So let's get into it. This symposium received a lot of feedback, a lot of positive feedback. And it's really something that we had not experienced before at a Nanos meeting. Tell me what inspired you to develop this symposium and how did you determine the content and plan it?

SPEAKER_03 4:47

Yes, it was a little bit more than a year and a half ago that I started to think about it seriously. But to dial back, it really goes back a couple years in terms of a personal journey. And I think to keep it brief, I had medical issues that led to me having to undergo radiation. And that became an incredible challenge as I remained a full-time physician, a full-time parent and spouse, but also needing to navigate multiple opinions throughout the United States, figure out a medical leave, and then because the treatment I needed was out of state, I had to move out of state for several months to be able to receive that. So I was away from my family, away from my children. And neuroophthalmologists actually came to me. My friends. They came to visit me, sit with me. And that entire journey of needing to figure out care for myself was deeply insightful, even though we navigate the system for our patients every day. It's deeply siloed, it is heavily matrixed, it is super complicated. And then in my particular case, I was denied not once and not twice. I was denied multiple times by my insurance to cover my care. And that ultimately led to needing to fight Anthem. And that was probably one of the biggest challenges. So before I could even begin treatment, I had to figure out either I was going to come up with six figures or get them to pay for what my doctors deemed was reasonable. And so I was already exhausted by the time I began treatment because it was just a battle from the very beginning. But ultimately a third party overrode anthem. And so you probably weren't expecting that. But that journey alone gave me just so much insight. I think anybody who's had to help navigate a loved one, a spouse, or even oneself through the system just realizes there's lots of points where you're just trying to figure out uh multiple things in one's life. And after I had that time to navigate and then go through treatment and then recover, I realized, yes, I'm coming back to medicine, but I want to make sure that the way I do it is different. And it wasn't that I wasn't always engaged in caring, just you come back different. I didn't want to come back practicing in the same way. And I realized that there were times that one's spiritual self needed to be cared for, and that's really not part of the conversation typically with your doctors or with the health system that you're trying to navigate through.

SPEAKER_02 8:01

So seeing things from the patient point of view really gave you perspective that it seems very insightful. I mean it it would maybe changed you as a person, it sounds like Yes.

SPEAKER_03 8:17

Yes. Like I said, I mean I I I think that these were all elements that are always integrated into how I care for people. But yes, I was deeply changed when I returned and realized this was a key a key opportunity that is missing. And let's be clear, we're not talking about religion, we're talking about the inner self, and that expression can be different for different people, and their spirituality can come in the form of organized religion or not at all. It could be nature, it could be art, it could be music, but for me personally, it comes through through faith. And I recognized that I needed to find an avenue to do this differently, even just within the space that I can control, because I can't control anything else. But I could maybe have some voice into the division of neuroophthalmology. Through that, I discovered that my health system actually had a course for physicians and their team called team-based spirituality. That was funded by a grant for chaplains within the system of various different backgrounds and faith that could sit with your team week after week. We did it for sessions of over several months of not learning so much about ourselves, but learning how we can identify areas of distress in our patients, and then serving as a generalist in a way of saying, I recognize this person's under distress, and then knowing how to pivot to having chaplaincy care come in. Now, currently, through most health systems, chaplaincy care is really offered in the inpatient setting, in a setting of tremendous crisis, usually in an ICU, but not really in an outpatient setting where patients spend the vast majority of their time after they leave the hospital. And so my entire team, my ophthalmic techs, my medical assistant, my colleague, fellow neuroophthalmologist, we did this together. And then I realized I have a bridge to nowhere because now we've identified these things, but I have no chaplain to be able to get people to where they need to go. They're all stationed in the inpatient space. And so that's when I began to connect with the chaplains within our system and learned that there is a grant that one can apply for to be able to do research and study this. And I realized this is an area that has not been really looked at within our ophthalmology. What is spiritual distress within our patient population who deal with visual impairment and permanent blindness? We see it. We sit across from them and we see a lot of them go through existential crises when we have to deliver some really difficult news that their vision is not coming back. And then there's that uncomfortable space of what do I do now? You know, this person is devastated. And so I worked with a lot of people to apply for this grant, people who are doing this type of mixed methods, qualitative, quantitative research, an area that I I haven't had experience in, and certainly not in spirituality research. And after spending a year putting that together, I submitted it and learned a few months ago that I've been awarded it. So it will begin in my practice of this full whole person care and integration in July. That's a big long answer though to how this began. Yes, that's how this symposium came to life with saying, I can't be the only one that is observing this with my patients and going, I wish I had something better to offer them. And for many people, you know, who are not part of any formal organized religion, that doesn't leave them with a lot of spaces to go to. And knowing that there are chaplains as I've gotten to understand their world, who they themselves, you know, are in that medical space. Agnes Wong came to mind because she's not only a neuro ophthalmologist MD PhD, a former, you know, chair of a department of ophthalmology, but she also then went to go on and get training as a chaplain. She's a very good friend. I reached out to her, and we've had a conversations over many years, but as this percolated with my own journey, I said, What if we could bring this to Nanos? And if we could bring this to Nanos, could I engage you in this space? And she said, Yes. And so that became the nidus for one expert who understood both pieces and had that dual training and perspective. From there, as I talked with various different neurologists, ophthalmologists, neuroophthalmologists. A name that kept surfacing again and again was Dr. Benzi Kruger, who is a board-certified neurologist, but also very much deep in the neuropalliative care space. Turns out he was on faculty at the University of Colorado, where some of our excellent friends are neuroophthalmologists, and they connected me with him. He is now left for the University of Rochester, my alma mater. And I decided to take a trip home because that's my hometown. And I spent time shadowing his incredible multidisciplinary, interdisciplinary clinic. It was eye-opening to say the least.

SPEAKER_02 16:00

Yeah, definitely. We are joined by Dr. Guy Jirawuthi Warabong. He is the co-moderator of this session as well. And Guy, I would love for you to introduce yourself, tell us a bit about your neuroophthalmology background and how you became involved in this project and what it's it's meant to you as we move forward to discuss the rest of the development of the program and how it went.

SPEAKER_01 16:28

Perfect timing. Thank you, Auri, for having me here. And again, I props to Melissa as well, as it's been a wonderful journey and a process that I've been uh invited to be a part of. So I'm trained as a neuroophthalmologist in my 19th year practice. Uh I'm here at Los Angeles working as a neuroophthalmologist for Southern South Formative Basedon North County. I did my training in medical school at the Boston University and did my neuroophthalmological training at USC for the student first part of that. I decided to do a new research that you still gordiness research, but also just know uh neurohthalmologists and then after that uh just for year the bottom of that for I learned about retina as well as the information and just started that front as a resource for UV artists and for a little bit about retina, but about 11 years of the practice. We focused on narothomology, so that's what I've been doing all of them. And so uh I remember a lot of me, and uh I was a part of and as we worked it out and talked together, it was something that was very novel for me. The term itself I was being educated as well to do in this whole process of what it is, and and uh I was just very privileged to be able to work with most uh together as a co-moderator and uh be introduced to the proverb as well as just talked about as well as having something in which most of the time for because I think we're not amongst the distance and the field is very hot and finding of ways in which we can be more apathetic and understand why we're doctors. Uh this was this is the right thing to do. We didn't know, I think most of them started not gonna try this before, you know, if it was gonna be a hit or not a hit, but we said, hey, let's do it and um and see how it goes, and and that's where uh I learned a lot about myself. And that's such a learned that I could see why most of us have known each other ever since she was a fellow and I was early in my training. But I I think both of us had uh an idea of incorporating and doing stuff into our practice, and we find the time to focus on to give it a name. To call it something else, I think was really refreshing because to really understand how we can be purposeful with our patients that led me to reading a lot of the different different sources of articles rather than the stuff review and the last set of cost of review for that too. And I might be overdone, but it's just over that the physical aspect of the lots of visions because the prognosis and do that, maybe the practical aspect, okay, because you love started to do law as I mean of the original draw, so it needs a lot of form for you. Of course, and you'll visit all you. But what we have drawn the draw will not have best of three and what we do on our own. The loss of vision, how people change the world is turned upside down when this happens. And just an emotional aspect. The social aspect, maybe you're outgoing person, you want to see people's faces and still load them from afar. And if you're not able to see so quality of the visual defect, that's more central than you're not be able to that person's name from to talk to life, or you don't want to have other people know what's going on with you. And then last but not least, the spiritual aspect of what allows the person to get through the hardest thing in life and so forth. So it was very granular. I I would say the first couple of meetings that Melissa and I have had together was really about understanding what the session was about, but also kind of delving into, in many ways, I think that's why most and I know each other probably chose me because we kind of knew that, and I didn't know until really doing this, that I was kind of doing already neuroop palliation seeing my patients. And this kind of really gave a framework and a skeleton of what that is. And so, yeah, that's the story.

SPEAKER_02 20:56

I think you guys make really important points. And I I kind of say that no matter what you do in ophthalmology or even in neurology, neuroalphthology will find you, right? What you guys are saying is that these things that we're experiencing, it's it's easy to know the nuts and bolts of why a disease process might give you this sort of visual defect or how it might impact you just from a nuts and bolts standpoint. But dealing with the emotional and spiritual effect of vision loss is something that we're not trained to do explicitly, but it's something that I think we need to be able to do because we're dealing with whole people in front of us, not just eyeballs, not just brains, not just not just optic nerves, but whole people. And it's not a matter of if you'll experience this in your practice of neuroalphtology, but when. And having the argumentarium to address this whole person sitting in front of you with the tools you're talking about, I think is really important. And I and I thank you for. Bringing this subject to us the way that you have in a very thoughtful and deliberate manner. So having said that, you know, I was at the session, and there was not a dry eye in the room, probably by the end of it. Take through the structure of the program, the content of the program, the topics that were discussed, and how you felt as you went through this program. Did it meet your expectations? Did it exceed them? That's a lot of questions I've asked, I know, but I kind of want to know what it was like for you to do this. And I'll start with you, Melissa.

SPEAKER_03 22:36

That particular day was one of actually trepidation. I I really wasn't certain as to how it would be received. I think that was something Guy and I talked about extensively. There are individuals that feel that, you know, we are here for hard science. We need the science. And I think that, you know, there is research and scientific work done in the area of neuropallive care, but it is a different kind of mindset of how we can be fully engaged with holistic care of our patients. And so that might be something that's out of everybody's comfort zone. And you're right, we're not taught this in med school, or maybe during the era that we've gone through med school. I think they're trying to integrate more pieces of this into med school curricula. So it was of some uncertainty. I also, you know, as we had the speakers with Benzi going over how this could be integrated into neuroophthalmic practice, the portion of neuropallive care. Agnes then followed with talking about compassion, compassion care and incorporating grief and loss. And then we followed it with an adult patient who happened to be a physician who had bilateral sequential, non-arteritic ischemic optic neurosophy, and him processing that experience. And then lastly, a young boy who had this very fulminant papilledema due to a brain mass and his loss of vision, but not only that, his loss of life. And so this was intensive in terms of emotional energy for myself. I held it together for most of the session, and then after the session, which I have never shared with you guys, I went back to my room and I spent the rest of the afternoon pretty emotionally spent. I was grateful for Agnes Long's presence. She is a good enough friend to just come alongside me and actually helped me to debrief and process what had happened that day. I think that the experience of having the father of the young patient who had to waste but had suffered with the challenges of brain tumor and vision loss was incredibly emotionally gut-wrenching. I don't know any other way to say it. And we he and I had even done a practice round a month earlier just to kind of go over everything. And he's like, Yep, yep, this is good. And he was always just like, yep, yep. And then the moment he came on stage and he looked me right in the eyes, I mean, his eyes were just filled with tears, and I could tell that he felt terrified. But he felt so passionately his love for his son, wanting to get the word out, wanting to make meaning out of something that just ripped his heart out, gave me the courage to continue and let him tell his story. I'll pause there though, because I'm eager to hear Guy's impression from that day.

SPEAKER_01 25:48

Yeah, as Melissa had mentioned, we weren't sure how it was gonna go. We had everything all lined up and I think that we had everything prepared in a way in which we felt confident enough that we were gonna convey the message that we wanted to convey. And if it was really a thought of we're gonna sow the seeds, and depending upon who was receptive to or not, it was just a matter of time, but it needed to be out there. So I think uh it was very it was very successful. Yes, I think the tears were definitely hard to hold back. Right after the session, we just had a chance to kind of thank everyone uh and the speakers and and uh hugs all around. But it was still, I think, fresh enough not uh to not have a chance to kind of go off. Yeah, you know, there was a lot of yeah. When we were preparing for this, but the whole process it was really also an introspection of my practices, of what I do, of how where I'm at, am I providing all the things that I can provide and when to provide those things. And it's been actually just very freeing to be able to know that I'm providing your authentic care is never for wasted, you know, because it will help patients along the way or just a little nuggets with with the father saying that, you know, when you take care of stuff of kids like thirsty, you know the practical things, you know. Yes, we're very good at doing the diagnosis of father. What happens now when you go home and test me, I mean stuff because we sometimes get so far away from those things to be able to count off parents about how to go about that stuff. It's not easy. I was very grateful for many of the people afterwards that came up to me and complimented the session and desiring to learn more. And I'm glad that part of the aspect of this first symposium was to try to develop the future because I'm part of our group of neuroophthalmologies, neuroophthalmological society of our nano section that may be considered the neuropallive portion. Because it does take practice, it does take time, and how do you carve that out of our busy days? So and by maybe being models or showing how others do it, we can learn from each other and get the best practices for it.

SPEAKER_02 28:14

Yeah, I I heard a lot of positive feedback myself and just sort of encapsulate the sentiment of the the session in that day. What did you want the take-home lessons from that session to be? And from the feedback you've received, do you think that message was received the way that it was intended, based on what you wanted to do?

SPEAKER_03 28:41

Our main objective was to give awareness uh that there are tools, there are resources, uh including the International Neuropathic Care Society, amongst many others, but that we don't have to reinvent the wheel. There are people who are doing this in many different neurological disciplines, and that we can glean their best practices to be able to modify it for what's appropriate for our patient population. And I should add, you know, Guy brought up the word palliative care, and I have to say that I was ignorant and thought of that as end-of-life care for the longest time, and it's really been this journey of realizing no palliate, to palliate means to alleviate suffering. And so our goal is as healers is to reduce the suffering of our patients. And for many of them, they are not actively dying, they are dealing with the chronic challenge of having lost their sight and what we can do to reduce that suffering as they go through the stages of grief and loss, and I hope a place of acceptance, but that isn't for me to decide. I think that to answer your other question, I do believe that those who chose to attend did get what they needed based on the feedback I've heard. And there are opportunities for next steps to attend neuropalliative meetings together. There's opportunities within that meeting for engaging in neuropalliative research and how to go about that. This is just a whole brand new path for myself, and I am literally learning it as I go. So I in no way claim to be an expert, but welcome others who are moved to join this movement and learn ways that we can integrate this better into our outstanding neuroophthalmic care.

SPEAKER_01 30:50

Yeah, I I think we did accomplish the goal of getting our neuroophthalmology community more awareness that there's such a term and what neuroophthalmology, neuropallive care means, and that some of us might be already doing it. And if we're not, then at least know that part of caring for patients, there's that component there, whether you are actively seeking that or doing that for the patients, or you're considering to improve how you can do that. It comes in many forms, in many different ways. I think first just being aware that you can have an impact upon a patient when you think of how do you decrease the suffering from the loss of vision, then just thinking of the condition stuff is the top right stuff, it's the most related majority patients will improve the thing will go away. That's adding a little bit of humanity to what we do. The session reminded me that we are healers or cared of ourselves. This is not a profession where we're here to perform a certain activity, and that's it. There is that component. And I think the session helped to emphasize to us that maybe longer our careers or the beginning of our careers, that we have the power to heal. We really do. And not everybody may be there to wanting to do that, that's okay. But for those that are searching for that, this is uh a step towards learning how to do that. And underlying all that, I think it can help our colleagues if they are suffering from burnout. Because when you give, you get. And knowing that you can really heal others, there's a lot of gratification in that. And that really then gets you through your day, knowing that you've made a difference in people's lives, not just making a diagnosis, but to help them lessen the suffering.

SPEAKER_02 32:46

That's wonderful. Melissa Guy, you guys have brought a really thoughtful and intentional approach to this subject matter that's really important to neuroophthalmology. A specialty that was already the best in medicine, I'm gonna say it. But you guys have elevated it at another level with this content, with your approach to it, bringing light to it, and presenting it in a way that has captivated and captured so many people in our specialty. I do look forward to the work that you're going to do with this. I encourage those who listen, those who are interested, to learn more about it. We'll have some resources probably in the show notes if anybody wants to get more involved. But thank you again. I've really enjoyed talking to you and learning more about this subject through your experience and your really great discussion of this. So thank you very much.

SPEAKER_03 33:44

Thank you.

SPEAKER_01 33:45

Thank you, Ori. Thank you for having us.

SPEAKER_02 33:49

A huge and sincere thank you to Drs. Melissa Ko and Guy Jirawuthi Uravong for not only leading such an important session at Nanos, but for approaching this sensitive topic with so much care, empathy, and insight. Their personal experiences and passion for palliative vision care serve as powerful reminders that healing isn't always about a cure. It's also about connection, support, and truly seeing the whole patient in front of us. It's not easy to talk about what happens when we can no longer restore sight, but their willingness to open that door has and will continue to have a real impact on many in our field. Their work is a touchstone for addressing patients with vision loss from a holistic standpoint, and that after we have done all we can to heal, we still have something meaningful to offer. If you are interested in learning more about neuropalliative care, links to resources are listed in the show notes for this episode, including the International Neuropalliative Care Society that will be holding their fifth annual meeting at the Barrow Neurological Institute in Phoenix, Arizona, from September 9th to September 11th, 2025. That's our episode for today. Thanks for listening. Take care of yourselves and see you next time when we come to you again out of the blind spot.