Strength in Caregiving with Tabatha Coffey

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters. And this is the Brain & Life Podcast. Hello, listeners. September is one of my favorite months. This is when we start getting ready for fall. School starts back. I love school supplies and shopping for school supplies. And of course football is back. Recently we got a hint of the autumnal weather here in North Carolina. Fall is also a time when all the new shows come out. They're on the networks or they're streaming on one of your favorite streaming channels. As you probably know, I am a fan of reality TV shows, particularly the ones that focus on improving the lives of others.
And our guest today on the podcast is reality TV star, Tabatha Coffey from hit shows like, Shear Genius, Tabatha Takes Over and Relative Success with Tabatha. Now she's known as a hairstylist and business owner that really helped others and her reality shows honed on improving others and their businesses and their lives. Now, she is coaching others via her web-based support service focused on personal and professional development. And she loves to empower others. In particular, she wants to empower and support caregivers because of her experiences caring for her partner who was diagnosed with both a brain tumor, in particular the tumor called glioblastoma. And she also had strokes associated with that diagnosis. So I hope you and our listeners will feel empowered today when you hear from Tabatha today.
Well, hello and welcome to everyone. Welcome to our listeners. So when I was reviewing the accomplishments of our current guest, Tabatha Coffey, I was impressed by the many hats that she wears. And then I went to her website and I quote, "Throughout my varied professional journey, I have worn many hats." So I love that I was thinking the same thing of her, and she thinks the same thing of herself. So Tabatha is so many things. She's a hairstylist, a salon owner, a television personality with shows like Shear Genius, Tabatha's Takeover, and Relative Success with Tabatha. She is an author, a fashion beauty magazine contributor and a podcaster at the Creative Thrive Podcast. I love the name.
Now she's focusing on coaching. And to finish her quote at the start of the introduction, "It's at the core of every role is my commitment to reminding people of their potential and inspiring them to become the best versions of themselves." She is with us today to discuss her life, her many careers, her coaching, and her role as a caregiver and care partner to her partner, Diana Keeler who passed away from glioblastoma and also suffered from stroke. So, Tabatha, welcome to the Brain & Life Podcast.

Tabatha Coffey:
Thank you for having me. I really appreciate it.

Dr. Peters:
Wonderful. So can you tell us a little bit more? I know I gave a quick introduction. Tell us a little more about yourself and where you're joining us from today.

Tabatha Coffey:
Sure. So Australia by birth, America by choice. I live in New Jersey. I've lived here most of the time that I've been in the States. Hairdresser by trade. I started my career at 14 years old and lucky enough to travel all over the world educating other hairdressers. Fell into TV is how I lovingly call it. Not a life plan, but definitely a blessing in disguise and a wonderful experience. And through all those transitions, I think one of the biggest things from being on TV and actually being a caregiver was wanting to support people in the right way. And that was my transition from television host, active business owner to caring and shepherding people in a very different, more thoughtful way, and when I went into my coaching business, which is actually over a decade ago.

Dr. Peters:
That's awesome. I love that. Caring for people and supporting people in the right way. I'm a huge fan of Bravo and loved your show, Shear Genius and Tabatha's Takeover. Can you tell us more about, you mentioned you just fell into television, but can you tell us more about how it was to transition from being a salon owner to being on reality TV?

Tabatha Coffey:
The blessing is that I was already an adult and accomplished. I say that because I could stand in the career path I'd already had and stand in being a business owner for many, many years and stand in the education that I had, that I had a very strong sense of who I was and what my craft and career were about and what success looked like. So I didn't kind of fall into the, "I'm on TV and people recognize me." That could happen really easily, especially when you are younger. It is an assault to the senses.
You go from being relatively obscure or maybe known in your community because you're a business owner there and your clients know you to walking through the mall or an airport or into a restaurant, and all of a sudden a vast majority of people know your name. And along with knowing your name is the presumption that they know you.

Dr. Peters:
I can see that. I can definitely see that. It has to be a little overwhelming.

Tabatha Coffey:
Yeah, it is overwhelming. I chose to take that journey. When the show was offered to me, I chose to take that journey and I did it with open eyes and open mind to see what would happen. I think it's quite difficult for the people around you because the people that love you and support you are then exposed to other people's opinions of you, or you're trying to have maybe a family dinner and people are consistently coming up and asking for an autograph or a selfie or something like that.
My intention was always be to really gracious with people because I appreciated them watching me and inviting me into their home for an hour every week. So I didn't say no to people unless I had to. But I do know that it was challenging sometimes for the people around me.

Dr. Peters:
And you mentioned the people around you, and we're really going to talk about your wonderful partner, Diane and how she battled glioblastoma and also stroke. Can you tell us a little more about Diane?

Tabatha Coffey:
Oh, sure. Well, she was certainly one of my biggest cheerleaders, which was amazing. She knew the insides and outs of me, the parts that I didn't particularly like about myself. She seemed more than happy to take on. And I think a real rarity in life is she let me be me. So through this adventure of television, it meant that filming my show, I was on the road a lot and I traveled a lot, which meant that I was away from home and the hours were very long and I was exhausted. And she never once said, "Why aren't you at home?" The only time she told me to come home was when I sounded like I needed support or sounded like I was really exhausted. And she was always, "Come home and I'll take care of you to go back out and do it all over again." So she was a real cheerleader.

Dr. Peters:
I love that. She sounds amazing. Can you tell us more about what happened with her and her diagnosis, and how it impacted you, and I guess both of you together?

Tabatha Coffey:
Yeah, sure. I was actually in Los Angeles. I was filming and I was wrapping up a season, so we had just wrapped the season, but there was still some things that had to be done. And I came home to New Jersey for Christmas. And when I was home, I was here for maybe a week. I noticed changes in Diane's cognition in the sense of her not being able to recall a word or her naming something that was quite obvious like a banana and calling a door or a window, something that just wasn't even related to a fruit. It happened a couple of times and it made me concerned.
I had a conversation with her about it and she said she felt fine. She was tired. Christmas is a stressful time for everyone. I had been away, she had been busy with work, and she just felt tired. And I can remember as I was leaving, I made her promise that she would go to her GP and I said, "Please just go to the doctor. Just have a conversation with her. Check in, make sure your blood work and everything is okay." Because Diane was very smart, and intelligent, and quick.
So this kind of word thing was very unusual. And she promised me she would go to the doctor. She didn't. I had a phone call probably two and a half weeks later after I was in LA and she was in the hospital. She was at work and she couldn't speak to someone. Her mind knew what it wanted to say and her mouth wouldn't give the words out. Frighteningly, she drove herself to the hospital and on the way to the hospital, she called a friend of ours who was a physician but an OB-GYN, so not... But just for some help and guidance. And they said, "I'll meet you at the emergency room."
By the time she got into the emergency room, she couldn't even speak. She couldn't give them her name. She handed them her ID, and then everything just kind of exploded from there.

Dr. Peters:
I've heard this such a similar story. As I told you before, I'm a doctor that takes care of brain tumor patients and also works with their loved ones. And this is a very common story. And even though it is a common story, I think it's important to share it with all of our listeners because I'm sure they're saying, "That could happen to my loved one and what should you do? What are those steps?" And it can be hard to prompt someone to... Especially if they've been healthy and they feel okay to have them go to the emergency room.
So I think it's important to go see their GP. So I think everything you did was the right things, and I'm sure so many of our listeners have been in the same spot.

Tabatha Coffey:
Yeah, thank you. I mean, I think for me, the biggest thing that I am grateful for, even though she didn't go to the doctor, but the biggest thing I'm grateful for is that I trusted that gut feeling that I had. I trusted that thing of it's just something is not right. Even though I couldn't name it, I knew it was a little off. And I think that is really important.

Dr. Peters:
It may be that our loved ones and the people that are around us the most, they can see those subtle changes. Before, I've had patients that go to, again, sometimes go to their providers and they're like, "Oh, I think you're just stressed out." But it's usually sometimes the caregiver that are like... Or the loved ones that are like, "You know what? They're just not where they're at normally, and this needs to be taken seriously."

Tabatha Coffey:
Yeah. I think it's really important. I think we do observe our loved ones maybe more than we observe ourselves. So we can be really great advocates and truth tellers sometimes.

Dr. Peters:
Yeah. I was just talking to one of... I was giving an interview and I was talking to the person who was interviewing me and I often said... She asked about, "What happens with the cognitive problems with our patients?" And I said... Well, sometimes I'll ask the patient and I'll ask them if they have problems and they'll be like, "No, I don't have any." It's the caregiver on the back that's going, "Yes, yes, yes." So you can't see Tabatha and I right now, but we are nodding our heads in an agreement.

Tabatha Coffey:
Sounds very familiar. I've been there.

Dr. Peters:
You've been there. So you co-founded ThriveHive. I love all these thrive words. I'm a big fan of thrive and that's a web-based support service focused on personal development and professional development. Can you tell us a little more about this endeavor?

Tabatha Coffey:
Yeah. So again, just looking at supporting people in a way that is really supportive and helpful and working one-on-one with clients is really amazing for me. We both get a lot from it. It can feel intense sometimes. You're opening up to someone and you're asking for guidance and we are putting together action plans, and I'm holding you accountable and all of those things. And it also doesn't work for everyone. So I wanted to have a platform that women could come to where they could get the tools that they need to feel empowered and have moments to connect with each other.
So we have community and we have a community aspect which is really important, but we can also come together and learn and grow with each other, and talk about ways to empower ourselves and what does that look like. And hopefully I can introduce them to some practices that maybe they're not familiar with that they can incorporate into their daily or at least weekly life.

Dr. Peters:
I just love that. And after Diane's passing, you use the platform to really support women and caregivers. Can you tell us more sort about that caregiver specific focus?

Tabatha Coffey:
I think it's really important to have a place where you can show up however you are, and that's important on a daily basis. But when you're a caregiver, that is very fluid and that changes sometimes minute by minute, depending on what's going on with the person that you're taking care of in your life. So I really wanted a platform where people could come wherever they are in their journey and again, feel support.
I'm very open about my experiences and how I felt. I don't mind talking about the fact that when you are caregiving for someone, as much love as you have for them, sometimes there's resentment for them because all of a sudden your life is stopped because you are caregiving for them. It brings up all these polarities in your emotions and it's very confusing and it can feel really uncomfortable for people. So I wanted, again, a space that people felt supported with tools. I introduced breath work and meditation and EFT and journaling and different prompts. And we can also come together and have conversations. And as I said, maybe look at things from a different perspective and sometimes an outsider really helps with that so that we can navigate through whatever it is we're going through.

Dr. Peters:
And as a physician, I love to send patients and caregivers to these kind of practice and what you're doing because we need help too. We need help to help our patients and we can be there in the room treating our patients and reading MRIs and providing the medicines. But then having an opportunity, something like ThriveHive and your coaching skills, this is perfect for us to tap into just to be like, "Check this out," because it could totally benefit them. So thank you very much.

Tabatha Coffey:
Yeah, thank you. I had many big lessons through being a caregiver, but one of those lessons was how much we need support. And it's so hard for so many people to ask for support and sometimes it's easy to go and ask your doctor for the support you need. I could go and speak to Diane's neuro-oncologist and say, "Here is what she needs," but it's not, "Here is what I need." So again, just creating the space and also to find the joy because through all of this journey, as crappy as it is and as, ugh, it can feel when you're going through it, there are moments of joy. And it's important for, I think as individuals, we tap into that joy as well because that really helps to fill our own cups and I believe it makes us better caregivers.

Dr. Peters:
I completely agree. Tap into the joy. I love that. I love the way you describe your coaching style, but I want to learn a little more about it. You call it somatic empowerment coaching. So what is that?

Tabatha Coffey:
So I am a registered and trained coach in different modalities. So I'm actually a neuroscience coach.

Dr. Peters:
Wonderful.

Tabatha Coffey:
And part of the reason I did that is and my coaching journey was really trying to find the tools that could support me, the way I learn is by diving deep. That's part of my process and who I am. So that was one of the reasons I wanted to learn more about the brains, how our brains work, how we can change our neural pathways, how we can change our behaviors and our limiting beliefs and do all those things. And the other part is I wanted to help my partner.
But what I also realized is we treat our heads or we treat our bodies, but we don't treat all of us. So somatic practices is really also looking at our body, looking at where we are holding stress and tension in our body where we're holding tightness and not listening to our gut intuition where we are not breathing deep enough and it's shallow. So we are creating much more resistance in there. And that's really what somatic coaches are about.
We're about not just we're helping you drop into your heart, drop into your body, release that tension. Sometimes for some people we can disconnect really easily and life teaches us to do that. And sometimes it's just working with a client and saying, "Can you feel your toe?"

Dr. Peters:
That is awesome.

Tabatha Coffey:
Can you just feel your toe? And I know that can sound maybe silly to some people, but when you are holding on all this tension just to put your focus on your toe, then you start to come into your body and ground a little bit more. So, again, I do a lot of mindfulness practices. I love meditation. I know it's not everyone's cup of tea, but there are other ways that you can take that five, 10 minutes and ground yourself and feel really centered.
Breath work is really amazing as well. Journaling is really amazing and there are ways that we can drop into our body and really just check in with ourself. How do I feel? How do I feel right now? What do I feel? Do I feel a little pain in my neck? Does my skin feel a little warmer than normal? What am I feeling?

Dr. Peters:
It's sort of feelings like not just the feelings of emotions and thoughts, but sort of feelings of our body and how they resonate together.

Tabatha Coffey:
Yeah, a hundred percent. And again, it's such a disconnection for so many of us because we live in our heads and that's how we operate and our brains are amazing. They kind of get us through, but that's not the wholeness of who we are as humans. So know somatic coaches and there's many different forms. Some just work on body work and deep massage and things like that. That's a somatic practice as well. The way I practice is always getting you to come into your body and honoring what it is you need in your body and how your body feels so that you can start to get a much better connection and conversation with yourself.

Dr. Peters:
I like that. Definitely, conversation with yourself. Now you have many clients and you've mentored people. You've done Tabatha's Takeover. You've done everything, Shear Genius. What have you learned from your clients and what have you taken away from those experiences, whether it's someone you've mentored or somebody that you've coached?

Tabatha Coffey:
We're so much stronger than we give ourselves credit for. We just are so much stronger than we realize we are or we give ourselves credit for. I believe that each and every one of us are magnificent. And in that magnificence, I also believe that we are not special, right? Special for me, alludes to a hierarchy. I'm better than you or I'm this from you. So it creates a separation when we look at ourselves as special. We are magnificent. We are beyond special and we are incredibly unique because even if we've gone through similar or pretty much the same experiences as each other, we view it from such a unique lens that, that makes us ours and that makes us unique and that is where our magnificence are because we're actually all the same. We really are. It's just that we are really magnificent in our uniqueness and the way we approach things.
I have so many people come to me that underestimate their strength and underestimate their magnificence and the uniqueness about them, and turn the volume down on that instead of amplifying it to share that with the world, whatever that looks like. It doesn't need to be a career. It can just be sharing your quirkiness with the world because it makes people smile. It can be sharing your amazing compassion with people or your talkative nature because that opens other people up.
I think we focus on it has to be this money-making thing or this fame-inducing thing that we have to do. And that I don't believe is true at all.

Dr. Peters:
Well, I believe in your magnificence. I think that's wonderful, and I think our listeners are going to totally enjoy this. So I just want to thank you. Continue to be unique and magnificent, Tabatha.

Tabatha Coffey:
Thank you.

Dr. Peters:
And I know you will, and I can't wait to see so much of your career continue to grow and flourish and you're doing so much to help others, so thank you.

Tabatha Coffey:
Thank you for having me.

Dr. Correa:
Can't get enough of the Brain & Life Podcast? Keep the conversation going on social media when you follow @NeuroDrCorrea and @brainandlifemag or visit brainandlife.org.

Dr. Peters:
Hello, listeners and thank you for joining us again today. I am your podcast cohost, Katy Peters, and I am so excited to introduce our medical expert, Dr. Akanksha Sharma. So Dr. Sharma is really a triple threat. I mean, she is board certified in neurology, neuro-oncology, and palliative care medicine. And so she treats patients with brain tumors and neurologic complications of cancer. She was trained in neurology at the University of Washington, and then she decided to do a two-year research and clinical fellowship at Mayo and Arizona and then a hospice palliative care medicine fellowship at the University of Washington.
So she blends sort of her specialty training in all these subspecialties, neurology, neuro-oncology and palliative care medicine to sort of give her an opportunity to look at the patient, not just from the cancer perspective, but really holistically caring for the patients and their loved ones, that key portion, the caregivers. And we're going to be really focusing on what is going on with our caregivers today. And this is not just for brain tumor patients and for brain tumor caregivers, but also for all caregivers and for all patients. So Dr. Sharma, welcome to the Brain & Life Podcast.

Dr. Sharma:
Thank you so much, Dr. Peters. It's an honor to be here and it's always really fun chatting with you.

Dr. Peters:
Oh, absolutely, absolutely. We're going to have a great discussion today. So before we get started on the specifics of brain tumors and how caregivers are so crucial for our patients, can you tell us, give me a little bit more about yourself and where you're joining us from today?

Dr. Sharma:
Yeah. So as you mentioned, I'm triple-trained. I work in Los Angeles, California. I work with a very unique group called Pacific Neuroscience Institute, and we work with the Providence Hospital system. So it's a community hospital practice which is unique in neuro-oncology. So we're providing clinical trials and expert-level care to the community where the majority of brain tumor patients are actually seen. We bring a really unique care program to patients where it's an integrated supportive care program. So that means that patients either see me in clinic where we're talking about their tumor and their treatment, but also all these other areas that are so important.
And then I have a separate clinic which focuses on symptoms on caregivers, on coordination of care, on advanced care planning. So really trying to make sure we touch these important areas in the patient's journey. And so I practice clinically neuro-oncology and palliative medicine. I also do research in the same area. And my research interest is in symptom management for patients with brain tumors in supporting the care partner and understanding how the symptoms affect the care partner and the patient and also in prognostication and how to help prepare patients and their loved ones better for the journey.

Dr. Peters:
Wow. That is so much. And I'm so excited about learning about your different clinics and we'll get into that a little bit more. Now, before we go to that, tell us just what are the basics that we should know if you get diagnosed with a brain tumor, what is sort of the disease one-on-one that we need to know?

Dr. Sharma:
I think what's really important in a diagnosis of any brain tumor and why it's so different than other cancers and heavy is that there is not just the oncological syndrome that you can sometimes have with malignant tumors where you're needing chemo and radiation and surgery and all the things that any cancer patient does need, but also neurological symptoms. So it's a neurological and oncological condition at the same time. And so that means that the burden to the patient is significantly more. You're dealing with symptoms that affect you physically, and mentally, emotionally, spiritually.
All of those have an impact on your social and financial life. And you are also at the same time getting cancer treatment. And even if you have a benign brain tumor, so to speak, benign in quotations because tumors that are benign can also grow back and wreak a lot of havoc on the brain. Regardless of what type of tumor it is, the fact that it's in the brain is causing a lot of problems.
So I think that's important to prepare and know. And then what's also important is that the care partner is a very integral part of the journey for the patient. They're really involved in each step because brain tumors have such a heavy burden on patient's functioning. A large majority of patients who have malignant brain tumors can't work, for instance. So that means that there's increased burden on their families, increased burden on their loved ones.
There's financial toxicity, but also the day-to-day disability is significant. And so we cannot separate the journey of the patient and the care partner in brain tumors. It's really happening at the same time, although it's being experienced differently.

Dr. Peters:
So you mentioned that there's different experiences based on the underlying pathology of the tumor, but I would also predict that you're going to see different things over the continuum, whether the caregiver is a spouse or the caregiver is a parent, or if a caregiver or the children for an elderly relative. Can you sort of talk about those different experiences?

Dr. Sharma:
Yeah. That's such an important and crucial thing. So when I was a fellow, we did this study with my mentor, Dr. Porter at Mayo Clinic in Arizona where we looked at experiences of patients and care partners every month. So we asked them to do a little iPad survey, which we said, "What's your biggest concern right now?" And then we had some questions for that. And what was really interesting is the patients and the care partners were always on different pages, so they didn't have the same concerns every month and the concerns changed to month to month, really wildly.
One month you may be worried about the disease, but the next month you're worried about money or the next month you're worried about the future. And so it was a really interesting look, and we did this for six months in patients with glioblastoma. But what was also interesting is that it really varied depending on if the care partner was a parent or a spouse, or a child.
This is a small study, but we had a couple of each. And the data also shows that in brain tumors care partners have different needs than patients. They have different concerns and they're having a different experience to some degree. The patient is going through their journey and has this unique view and the care partner is viewing that journey and has their own perspective on what's happening.
And so what that means is as a child of a patient with glioblastoma, you may be worried about what is going to happen in the future? How am I going to take care of them? How do I make sure that we have the money and the finances and all of these things? As a spouse, you may be worried about what's going to happen to me and my children? How do we make sure that my loved one is comfortable?
And some of those are going to be similar no matter what. But then each type of care partner has different concerns and different comfort levels in sharing that. The research shows that children may be more protective of their parents with glioblastoma. Parents might be more protective of their children with glioblastoma, for instance. Spouses may share information more equally. And so there's varying levels of coping and varying levels of anxiety depending on what kind of role you have.
You might be willing to share more. If you're a spouse, you might be willing to talk about it more openly versus parents and children may have a different kind of dynamic. So it's really very complex depending on who the care partner is.

Dr. Peters:
So given that you see those changing caregiver needs over time, and it can vary. I'm an neuro-oncologist too, so I can definitely see that. What are some advice to healthcare providers and systems on how to really keep up with that? What should we be doing? And then how should caregivers be engaging us? What advice should you give both the provider and the caregiver?

Dr. Sharma:
Yeah. That's such an important question, and I think that's one of the things that made me really passionate about doing both palliative care and neuro-oncology together because it helped me get a language that I could use. But also I noticed in my practice that I often will... When I ask care, I will specifically ask care partners, "How are you doing? How are things been for you?" And about seven out of 10 times, the care partner will start crying because they have not been asked that before. And sometimes these are people who coming for second opinions for recurrent disease, they've been on the journey for a while, and I can't tell you at least once a week someone tells me, "No one asked me how I was doing until you asked me."
So I think that's so important. And it's not anyone's fault. The system doesn't really allow us to ask for the care partner because we are also like, "Well, what if they say they're doing terrible? How am I going to manage that?" Neuro-oncologists and oncologists and radiation oncologists and surgeons all have a small amount of time to spend with their patients. And so we focus that on the patient. But as a result, especially in brain tumors, we really miss an important perspective because research indicates that patients may not always have the best sense of what they're going through.
So that same project that I mentioned to you earlier, I'm going to go back to that for a minute because what we realized, we also asked patients their perception of their illness every month, and we compared that to the care partner's perception. And this was published a few years ago and we found that it was wildly different. Patients were more optimistic and had a different understanding of what was happening to them versus their care partner.
So that helped me realize that the patient may not have a great insight into their situation. Sometimes they may not fully understand because of the disease. Not because of their own fault or denial, but because of the disease. And so it's even more important for me to know exactly what's happening at home. And care partners, especially in our society, don't really share that themselves because they feel awkward about speaking over the patient. They want the patient to have autonomy. They don't want to seem like they're questioning.
When I call care partners later, they'll say, "I can't believe my husband didn't tell you that he's been falling every day." Or he had a seizure two weeks ago, but he doesn't want me to mention it. Those are really important things for the neuro-oncologists to know, but sometimes they're not available easily in the visit. So what I suggest providers do, at least someone in their team check in on the caregiver, whether that's nurse navigator, whether that's social worker, but someone saying, "How are you doing? Is everything really okay at home?"
And at least five to 10 minutes during the visit or separately right after the visit because it's so important to know exactly the pulse of what's happening. We also know that patients whose caregivers go away. Either they become burnt out or they abandon the patient for numerous reasons or just pass away. Those patients do worse. You cannot go through this journey alone. And so it's important to check in and say, "Hey, do you have everything you need because our partner in helping treat this patient. If we lose you, it's going to really be bad for everyone."
So I really try to check in. From a caregiver perspective, I empower caregivers to say, "Hey, this is what I saw. This is how I'm feeling. Can we take a minute to hear my story?" And that might mean speaking up in the visit or saying, "I really need some support." But a lot of brain tumor centers or treatment centers have so much support that you may not even have tapped into. And sometimes providers just forget to bring it up.
So ask, is there a social worker I can talk to? Is there a psychologist I can talk to? Do you have a support group that we can go to? These are really important questions and you should not feel afraid to ask for those.

Dr. Peters:
And I agree. Don't be afraid to ask. And also, again, identify those individuals within the care team that are going to reach out to the caregiver. As I mentioned before, you're triple threat, trained in neurology, neuro-oncology, and palliative care medicine. For our listeners, can you just really give us the basics of what is palliative care medicine?

Dr. Sharma:
Yeah, I'd love to. I think this is an area that is ripe for misconception and myths. So I love to share my definition of palliative care, which is it's the art of alleviating suffering. So with any serious chronic illness, whether it's life limiting or not, whether it's terminal or not, there is suffering. It doesn't matter if it's diabetes, if it's hypertension, if it's cardiac disease or if it's brain tumors.
There suffering is associated with chronic illness. And palliative medicine is the art of alleviating that suffering, making sure it's more manageable, making sure your symptoms are managed, that you're coping with it as best as you can, and you have the support and coordination in our healthcare system, which is such a behemoth right now, and it's so huge and difficult to navigate that you have someone to walk on that journey with you. So I like to see it as a bridge between comfort and cure.
That doesn't mean that you may not get treatment. That doesn't mean that you would have to stop treatment. There's a common misconception that palliative care is hospice. Hospice is palliative care at the end of life. So you can get palliative care at any point in your journey from diagnosis onwards. You don't have to have a limited terminal diagnosis. You just have to have the eagerness to have it and availability. That's where it's tricky. Palliative medicine is not easily available everywhere.
There are people who do specialty palliative care or people who integrate palliative care into their practice like I do, and the specialty palliative care specialists are hard to find. But in most cancer centers, we now have a requirement from the American Society of Clinical Oncology that there be palliative care available in one form or another. It may be called supportive care. It may be called palliative care, but usually brain tumor centers also have been increasingly having someone who meets that need. And so it is something that I strongly encourage patients and care partners to ask about.
If you ask about it will be offered to you. Sometimes it's not directly offered, but it is so helpful to have someone else on the journey with you. And you can really decide how much you want that palliative care provider involved. But it's good to at least have a visit and see what they can do for you.

Dr. Peters:
And thank you so much for explaining that because I do think there are misconceptions around the language, and I do see that when my patients do get an opportunity to get that expertise of palliative care because it is really about their symptoms throughout the entire journey, that they can really feel better. One of my old adages from Dr. Jason Rosenberg, headache specialist de jure, he said, "If you felt better, you might feel better."

Dr. Sharma:
I like that.

Dr. Peters:
I don't know if that's the palliative medicine term. Now you mentioned sort of in your introduction that you see brain tumor patients and help direct their therapy, but then you also said you have a separate clinic just for symptoms. Can you tell us about that because I think that sounds like a great opportunity to really engage both patients and caregivers.

Dr. Sharma:
Yes. So the practice that I've started here, we've been doing it about three and a half years, is that we see patients in a separate supportive care clinic if they have higher needs. So if patients have specific needs and they need extra care, or they have higher symptoms or the care partner has symptoms, then they're referred to my supportive care clinic. And that's a special clinic where I can focus just on those symptoms.
We're not talking about MRIs, we're not talking about treatment, we're only talking about the symptom. And we're checking in. We're checking in on how you're doing, how the care partner is doing, how are you coping with everything. So for example, I have a patient with glioblastoma who's doing really well. There's complete response on her MRI, but we check in every six weeks or eight weeks to see how she's coping because it's still been a huge trauma to have this diagnosis.
Or she might have symptoms from the Optune device that she's wearing that we troubleshoot. When she went through chemo, we worked on nausea management. So there's just a lot of things we can work on so that we can optimize her journey. Sometimes it's a very specific need. Like today, I saw a patient who was having central pain and I can manage her pain with opiates, and I also was able to educate the family about hospice because they had specific questions about hospice.
But that doesn't always happen. Most of the time, my focus are patients really just want to know, "How can I live better because I have so many symptoms?" And in that visit, we'll also check in on care partners like, "How are you doing? Do you have a counselor? Do you have a therapist? Are you seeing your primary care team? Do you need additional help at home?" We have a list of caregivers that we provide when patients are ready for that. We talk about support groups in the community.
So it's really diverse, but it's been a really great addition to our clinic because we can spend more time. And also I do that clinic virtually within California, which is nice because patients don't have to come in for additional visits. So I actually have a hundred percent short rate because it's so easy to just hop on and say, "Hey, this is really bothering me."
I have patients who are long-term survivors and we're talking about things like planning for children. How do I make sure that I manage my fear of scans even though I've been so many years out? And so there's just a lot of different things we can do in that clinic, which has been really fun and really meaningful, and I like to think it's improved the quality of life of the patients. Based on what you were just saying earlier, if we want people to go through trials, but if you don't feel good, then you're not going to go through trials.
If you don't feel good, you're not going to do that next line of treatment. So really trying to optimize so that you feel good so you can get more treatment.

Dr. Peters:
I completely agree, and I love how you're doing it and you're offering really a pathway for patients to come to see you if they need to, or also to have those virtual visits. And again, we're both neuro-oncologists. So much of the visit sometimes focuses on the MRI scan. And I often tell my patients, I was like, "We can look at MRIs all day long, but I want to know how you're doing? What's going on in your life?" And answering those questions and really getting to the heart of what's going on for your quality of life.
So you really sort of focused in more on the patient there. What are some resources that are your favorites that you continually recommend to your caregivers?

Dr. Sharma:
Yeah. That's a great question. I actually wrote a chapter in the continuum last year for the AAN, where I called it palliative care support for patient and care partner. And I really tried to focus on the care partner in every aspect because we need to make sure that they have the resources. And at the end of that chapter, I put in a list of resources that I really like and hand out. One is the Brain Tumor Network. I think the Brain Tumor Network is an excellent resource. It's the Shantik Foundation. They help you navigate clinical trials. They help provide support. They have social work, nurse navigators. I'd really like Roon, R-O-O-N, GBM.
Roon has been a great resource for my patients, but also my care partners because they have caregivers who have videos on there, so they have videos that are very short and very useful. I have patients look at the American Brain Tumor Association and the National Brain Tumor Society websites. Both of them have support groups that are focused on the care partner. And they're virtual, they're monthly.
The National Brain Tumor Society has a brain tumor conversations that's really nice. It's run by a patient and care partner that I know personally, and it's a wonderful support group. For my younger patients, I've actually found that some of these new channels like Discord and Slack have these support groups where people can chat. And it's for the younger care partners. It can be really useful. Facebook has some great support groups. What I suggest is try out some of these things and before you decide they're not for you.
Because sometimes people say, "Oh, support groups is not where it's at." And then they go and they're like, "Oh, actually I found this one person who I really connected with." And honestly, that one person is all that matters. So really try it once or twice before you give up. The other thing I really like is that there's a caregiver guide that's available to UCSF that's really detailed and comprehensive. And it was developed for brain tumor patients. A similar guide exists from Australia, and you can look at the Piece of Life Foundation for that.
This is for people who really want something that they can hold onto and look through. For some people, they find that too overwhelming. And then one of my favorite books is You Can Do It Alone. It's by Maria Whitesell. Her husband had glioblastoma and he was treated here in LA. But I really like that book for spouses and for people with young children because her child was quite young. And so she worked with a grief counselor to write this book that has really useful practical tips for every part of the journey. So those are some of the resources.

Dr. Peters:
Well, thank you so much for sharing all that. That's pretty extensive. And I'm going to just say check out Dr. Sharma because... Are you on social media?

Dr. Sharma:
I am on social media, yes. And I keep trying to post resources.

Dr. Peters:
So she'll post some resources out there. So check out her social media. But I just want to say thank you so much, Akanksha. This was such an enlightening conversation. So hopeful and your expertise is really, truly needed in the brain tumor community, and you are going to continue to be a star and an emerging star, and a shining star for both our patients and our caregivers. So thank you so much.

Dr. Sharma:
Thank you so much, Dr. Peters. It's always an honor to talk to you. Thank you for all you do for the community.

Dr. Peters:
Absolutely.

Dr. Correa:
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Dr. Correa:
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