Self-Advocacy Is Not Optional In Health Care

We talk with Olga Torres about what it really takes to survive the U.S. healthcare system when trust is fragile and the stakes are high. We share practical tools to document your story, ask better questions, and build the skills to speak up even when the system is rushed or biased. 
• Olga’s path from public defender to narrative medicine professor and patient advocate 
• A near-fatal medical error and why self-advocacy becomes nonnegotiable 
• The scale of diagnostic error and the unequal care faced by women and Black and brown patients 
• Why patients stay silent: fear, power imbalance, lack of knowledge, prior harm 
• Preparing before appointments with a journal, patient portal, and clear written questions 
• The HEAL framework: Honor, Expertise, Assemble, Listen 
• Repeat-back as a communication tool when instructions are unclear 
• “Ask Me 3” questions to keep visits focused 
• Balancing long-term self-advocacy with boundaries, rest, and community support 
• Language access as a legal right and why family interpreting can take away agency 
Be kind always. You never know what someone is going through. So please exercise that right to use your voice when it comes to your healthcare journey to take the lead. 

Transcript

Why Patient Voices Matter

SPEAKER_00 0:00

Good day everyone, and thank you so very, very much for joining in with Sandra L. Washington of Tom's MediHealth Foundation and Medihelps LLC. Thank you once again for joining in for Sandra speaking with Sandra L. The patient experience. Today we have the awesome experience of speaking with Olga Torres. And Olga, if I'm saying your name wrong, please stop me. And please know that it's not coming from the heart, it's coming from the head. So please, please stop me. Today is a really important time for us to have this discussion. Because in having this discussion, we're hearing one from a professional's point of view, and two, not only a professional, but we're hearing from a patient's point of view. Most people don't understand and they don't know that a patient, you know, it's like, well, who's a patient, Sandra? And I have to often say, a patient can be the providers themselves. They can be those professionals that we look up to, whether it's financial advising, whether it's legal, whether it's um law, you know, any type of law, whether it's anything, um, any sector, whether it's a provider themselves. Um, so often I'm asked, okay, well, what do providers do? They don't get sick, but yeah, they do. And sometimes they have a struggle with dealing with the patient experience because they're actually not used to seeing it from the patient's side, they're used to seeing it from the provider side. So that actually puts their mindset in a whole different thought process when they have to go through this puzzled healthcare system that we are fortunate to have here in the United States. Um, when they have to go through it as a patient. And what I try to get patients to understand is this providers are at times patients, so we have to give them a break. So when we do the patient experience, it's not to like really come down on providers, it's not to really share a different set of, you know, like say, oh, they're all bad, or they don't know what they're doing, or I had this bad experience. That's not what this is for because once again, a lot of times providers are patients as well. But this is to bring together the voices that need to come together so that the patient experience, good, bad, or in between, are is actually explained. And it's explained not so that you listen to what's being explained, but so that you understand what we're saying is that we as patients have power. We want that power to be heard and recognized. We're, you know, sick of being the scapegoats. Um, but we have the power and we want to use that power. And so, with using that power, we gonna we want to be able to use our voice. So, without further ado, what I'm going to do is go ahead and let Miss Olga represent herself and tell us a little bit more about who she is and why it's important for her to take a stand, a true stand, and be standing there in a gap for others when it comes to patient

Olga Torres And Narrative Medicine

SPEAKER_00 3:20

experience. Olga, can you please tell us about yourself?

SPEAKER_01 3:24

I I will happily. I you made me think of something. I I'm um I'm a professor at Columbia University. I teach narrative medicine, um, and I'll explain what that is. But you said something that resonated with me. Um, one of my favorite authors um uh was is Susan Santad. And she was a poet, she was a thinker, a critical thinker. And she has a great quote that says, Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of the other place. And so, like, so well um resonated with me that you said doctors are also going to be, um clinicians are also going to be patients, right? We we may all want to be well, but we're also going to have to be ill, right? So that's why we need to learn to be how do we how are we going to learn how to navigate the this broken healthcare system that we're in? So a little about me. Uh I used to be a criminal defense attorney, uh, in fact, a public defender. So I I represented people that could not um afford an attorney. I was very lucky to get scholarships to good schools. When I graduated, I disappointed my mother when I said, I'm not gonna go to a big law firm, I'm going to represent people from our hood. She was like, but they can't they can't afford your education. I said, but I who else is gonna do it, my life I don't do it. Uh that was always a point of tension with her. Um meanwhile, you know, she took care of poor people too. So I was only following in in her and my dad's footsteps. Later in life, um, I experienced a brain injury due to um a medical error uh at a hospital. And so we're gonna get into that in in the um in in I think in the dialogue we're going to have. And then um it took a very long time for me to recover, but um I realized I had that tension, right? How was I going to get better if I did not trust the clinicians that I needed in order to get better, right? So I would come in and it was Dr. Washington, and um he was like, What do you you know, why you're here to see me? And I'd be like, I don't trust you. He was like, Okay, you know, you gotta slow down right there. But there was constantly that trust. And that's how I ended up in the narrative medicine program, right? It seeks to improve communication between healthcare by helping clinicians, patients, anybody that wants to improve healthcare, better see, improve, and interpret uh patients' stories, right? Um, and see for clinicians to be able to hear them better and for us to be able to better tell them better. Um, so it's it's it's a phenomenal program, and it has to do with narrative competence. How are we competent to hear and tell our narratives? I was all in, um, and I I haven't looked back. I work with patients, I work with clinicians, I use it in journalism, so I I I love what I do. So that's a little bit about me.

Helping Beyond Money And Titles

SPEAKER_00 7:01

You know, oh good one. You and I e-connected through LinkedIn. Um, I I was like, okay, so we have this connection, and I actually see now more of that connection in listening to you because I was told when I first started Many Helps LLC was the first arm of what I started, right? And then I linked on Chums Many Helps because the people who I was designed to help under our for-profit arm were people who could not afford to pay my business prices. And I left so many people, like, you know, I would give them consultations, but then I would be like, okay, so am I really helping them? And, you know, as me and my husband got ready to leave corporate life and start, you know, okay, so what are we gonna do now that we're no longer working with corporate America? I brought it to him and I was like, you know, I feel like I'm not helping who I'm supposed to help, who I can help, who needs the help. I can't help them. And so he was like, so what are you thinking? And I'm like, I'm thinking that perhaps I need to add on a not-for-profit side so that I can actually, instead of turning people away that need help, I can actually help them because I can actually do different things to be able to actually help them. I could still keep my for-profit side, but use that to as revenue to funnel into the not-for-profit side so those people who are actually needing help can get to help. And so many times, you know, as I heard, you know, in the early stages, diversity, equity, and inclusion, I was like, but how do we include people? Like the people that we need to help. How do we include them if we're not letting them know that yeah, there's resources, yes, your voice matters, yes, there's a way that you can actually get people to understand that you have a voice. And for you, the patient, whether you're the patient or whether you're someone that's working on a patient's behalf, whether how do I get you to feel comfortable enough? Where when you go to the doctor's office and you say, I'm really not understanding what you're telling me, that that doctor is hearing to listen and not understand, and it's getting you closer to the step of receiving better health outcomes. So I'm like, I get it, I get it. I can see you and your mother and you like mom, but this is what I'm gonna do. And her saying, but they're not gonna be able to, and I have to tell people often, especially when I was starting the nonprofit arm of it. When they were like, Sandra, but the people you're trying to help, they can't pay you. And I had to ask people, and I still find myself at times asking people, why is everything we do tied to money? Like, why do we have to always put a dollar sign? Yes, money is important. So I don't want nobody to say, hey, Sandra said money ain't important. So let's rush to her because she'll give us free. That's not what I'm saying. But what I'm saying is sometimes we have to give from the heart. Sometimes we cannot include, I can't help you because you can't pay me. Where do we come from? Yeah. Well, we're in a society that's driven by money, that's saying to I can't help you because you can't pay me or you can't pay me enough for whatever other reason that we come up with, we have to get paid, especially right now, we have to get past the point of saying the only way I can help you is if you pay me all this money. I I don't have it.

SPEAKER_01 10:52

I need to for me, it's also like, yes, so we we have a job that pays us, but then the rest of the work that I'm doing has to come from, I have to lead with the heart, with joy. Helping patients that can't afford to pay me, I do because I'm leading from my heart, right? Those are my not non-English speaking, my limited English proficiency patients, my lupus patients that are overwhelmed because they just were died of. And I'm like, the sky's not falling, look, right? We're gonna hold it right. I'm gonna hold it for you until you realize it is not gonna fall on you. It is not a death sentence. We are going to figure this out, right? So for me, my pay job is not my joy job and what I'm teaching and I'm doing that work, yes. But the other stuff I have to do for money, does it is it from the heart not necessarily? But the word that I'm the patient advocacy work, the work where and I'll I'll get to that um in one of the questions that I think is so pivotal, um, where I see the patients doing it themselves, advocating for themselves, becoming health literate, right? And I I I will answer this again, but nine out of ten of us are health literate in this country. That includes engineers, that includes teachers, that includes people in corporate America. Nine out of ten of us. Why? Because clinicians speak medical leave. They learn, I don't remember how many hundreds and thousands of words in the four years they're in medical school. Nurses learn that language, right? We don't learn that language, so we show up to uh a doctor's appointment and they're throwing these words at us, right? And then many of us are embarrassed to say, um, excuse me, uh, can you please say that in I don't know, English, Spanish speaking language, but say that in plain talk. And then because we don't want to look stupid, right? Or we don't want to sound stupid, so we leave coming in even more confused than we walked in. So that right, that continues to perpetuate the problem. So when we start, that comes from the heart. So that that little bit, yes, that takes time of our day. We're more exhausted, we're going to bed later, we're eating later. Maybe that's just me. Um and but that comes from here, which is part of why we do it. That is our, as my husband calls it, your for-free work. Because I call it for free. So uh yes, baby, I'm doing some for free work, but that that comes, I'm okay with that because I feel fulfilled, and I know that I've helped somebody like get a little gumption that they can go in and do it themselves.

SPEAKER_00 13:50

You know what? And that's exactly how I

Medical Error And The Survival Lesson

SPEAKER_00 13:52

feel. I'm gonna actually go ahead and move into the first question for the day, which is that you've navigated the healthcare system both as a legal professional and as a patient living with chronic illness. How did you first realize that self-advocacy wasn't optional, but it was the requirement for survival?

SPEAKER_01 14:14

So, as I've already given a lead into, right? I came into the healthcare system with a law degree. Clear communication was integral to my job. I was good at it. Um, I knew how to read a contract, build a case, I qu I knew how to question witnesses. Of course, I knew how to talk to uh clinicians. Yet I almost died from a medical error in a hospital, surrounded by people whose job it was to keep me safe. That was the lesson, right? What happened to me was not an anomaly. In the work that I do now, I learned that roughly 795,000 Americans die or are permanently disabled each year because of diagnostic error. And the range of that study runs from as low as 598 or over a million, right? So self-advocacy is not a personality trait, it is it is infrastructure. When you don't build it, the system fills that gap with its own assumption, right? The research is clear. The cross-pain management with uh maternal mortality, diagnostic error, and algorithmic bias, women, black and brown patients receive measurably worse care. That is not an assumption, that is racism, we have to call it what it is. So I refuse to be victimized by it again, and I made it my life's work. And I want to ring the bell, I want to ring it everywhere that I can, and I'm not thankfully, I've been able to get work, despite the fact that I work at a hospital, but I they know what I'm that I'm out there talking about this.

SPEAKER_00 16:03

You know, you've you bring up a really um valid point, and it's one that I actually addressed in my last book that I wrote, um, which is Your Voice Your Tool, which talks a little bit about the medical errors that are occurring in society. And sadly, it comes down to this it doesn't have an age. These things do not have an age. Its health condition doesn't have an age, it doesn't call you, and I have to remind this of what so many people that say, well, Sandra, what the work you're doing as for older people. No, no, no, no, no. It used to be a point in time when I could say, well, yeah, it is leaning towards people that are of a certain age. But over the past five, six years, it's been brought to light that, especially with COVID, COVID brought it to light. It did, COVID and her family came in setup shop, didn't ask us, hey, Sandra, what you doing Friday at noon? I'm coming to stop by. I'll be there to visit you. I'm gonna stay for two, three years. You're gonna be hospitalized because of this, giving me an agenda of what they're gonna do when they show up. It just showed up. It didn't just show up at my body, it showed up at people that were 10, 20, it didn't have health. Illnesses don't have a name. Health disease conditions don't have an age. It just shows up. So if you're not proactive about what you're doing and how you're taking care of yourself, then it's gonna happen. The chances are it's gonna happen, it's gonna rise over and over and over again. But what you just say, it brings up a really valid point. You, you know, you didn't ask to have lupus, you didn't ask to have your other comorbidities that come along with lupus and come along with just about every major health condition there is. There's normally two or three conditions that go along with it. You didn't ask for it.

unknown 18:12

Yep.

SPEAKER_01 18:13

So, just to that point, um, what led to my thing was dehydration. I got food poisoning. On a hot August day, I ate the last jerk chicken on a food truck. Now I trusted this woman. She made good food. She said, ma'am, it's really hot out here. It's the last feast. Are you sure you wanted it? My choices were McDonald's. I went to the bodega, some uh fried food, or her food. So I I I bet it on her food. I got really bad food poisoning. I got dehydration. Now, I do have a pituitary tumor that gives me not diabetes melodies, not low, not high sugar. I have diabetes insipitive. My sugar is usually low. So the fact that my sugar ran low and I was dehydrated, they were worried. Like I could really dehydrate really, really rapidly. I didn't know that that could cause low sugar, low potassium, could cause a heart attack. I was like, a heart attack? I'm 29 years old. I'm on my feet all day, every day in court. They were like, look, just to be safe, go to the hospital. I was like, look, I'm drinking Gatorade. What are you talking about? They were like, it's best you go to the hospital. I said, okay, you're gonna take care of me. 29 dehydration. Next thing I know, I'm in a coma. Nobody calls my mama. She was I wasn't married. Now I had a boyfriend of you know, not quite a year, but we were serious. They called, nobody called my mama. She comes in, they're like, mmm, there's been an accident. She's like, an accident. Did she fall from the bed? Nothing. They take her I see you. I'm intubated that they're doing all the things to like bring me back, connect me to I can't listen. I have a kid right now. I would be crawling on the wall. But that's what I like. Sometimes it's your health, but sometimes is that they let's call it what it is, they mess up. Um, there's a saying in Spanish that's like so-and-so, but like so-and-so turns into so and he, so and she. You know, everybody thinks somebody else is doing the orders, but nobody follows the orders, right? So the orders fit in the chart, but nobody does what they're supposed to do.

SPEAKER_00 20:41

You know, you your story, uh, and and once again, it goes to the fact that age is not important when it comes down to health conditions, when it comes down to disease conditions. Your story reminds me of our board member, um Bradley Schwartz, who actually experienced the same type of thing. He shows up at the emergency room. Yeah, it was a holiday. So when you go to the emergency room during the holiday, pick a number, any number. Normally, the regular doctors are not on staff. He's now he's now an um an amputee because of a medical error, which which is why we need to actually point out part of self-advocacy, part of the art of self-advocacy is bringing someone with you that can understand, that knows exactly what's going on, that can follow the trail of what's going on. It's a little bit easier when you're a little bit older, you know, you had a mindset that, hey, let me go and pull, like, where's my medical records? But when you're 20, 30 years old and things like this happen to you, very often you're lost. You're like, okay, so this happened. I'm really not sure what happened. I mean, thanks to the internet now and things. To the work that you're doing, and I'm doing, and so many other um paid to advocacy and community health workers are doing. A lot of this is now coming to life and being brought up versus kids. But I beg everyone that's actually listening to this, if you have someone that you can take with you to the doctor's office, to the emergency room. If you have someone, if you're an inpatient, you have someone that's like, let me go check on her, and you have someone coming in every day, please use them. Please don't let your pride and your ego swallow you a whole, because it will swallow you whole if you're entering into the medical system and you have no help. It will swallow you whole.

SPEAKER_01 22:45

When you're ill, you can't advocate for yourself. When you are not feeling well, you suck at advocating. I was like, I cross-examined for a living. I didn't cross, I literally lied in bed on the gurney like this. And in my head, I was popping it off, but it was all in my head because I was like, all I managed to do was like, I need to throw up again. That's all I managed to say. I wanted to say, why aren't I getting care? But all I managed to say was, I need to vote, I have diarrhea again. Sorry, probably TMI. But that's really all I managed to say because I was not feeling well to say what I needed to

Prepare Before You Get Sick

SPEAKER_01 23:31

say.

SPEAKER_00 23:31

Exactly, which brings up another good point. And then we'll go to question two, which brings up another good point, and that's this stop waiting for things to happen to you. Be proactive about your health care. What um Olga just said makes total, total sense. Um, in that when you're sick, you're not thinking about, hey, let me call so-and-so and so-and-so and tell them this, or let me go do this, or let me go do that. You're thinking, let me get better. Like, what's wrong with me? Why am I not getting better? Which is why I actually will tell everyone, and I have told everyone, get a journal. I mean, I've I've written a journal. You don't have to buy my journal, but go to the $1.25 store and get you a journal and start writing things down. Leave that journal. One, take it with you to the doctor's office so you can write all your notes down. Two, when you return from the doctor's office or the hospital, wherever else today you are, when you return, make sure you're putting that somewhere where, should you get sick, someone can find it. Like they're not having to tear your house or your apartment up looking for it because you got it sitting on your dresser. You haven't finished with where your, you know, where you're important paperwork is. Make sure that's what you're doing. Because when you're sick, the last thing you're thinking about is, okay, I need to call so and so, and I need this that you're not thinking so please but take the time to be proactive when it comes down to your oral healthcare. You actually as a patient, you don't actually own your healthcare journey. Don't let anyone tell you anything else, but you own your healthcare journey. This discussion that we're having today is to show you the importance of you understanding and taking control of that healthcare journey that you lead. The doctors, your support network, all of them, they're following you. So it's important for you to stand out in the front and be that lead person when it comes down to your healthcare journey.

Why Patients Stay Silent

SPEAKER_00 25:46

Oh, my next question to you is this many patients struggle to speak up in medical studies. From your experience, what are the most common barriers? Can you give us like three common barriers that you upon will keep people that keep people silent?

SPEAKER_01 26:03

So I found in the work that I do that there are uh patients stay silent for four main reasons, and they're all very interrelated. Fear, and I because again, the population I work with are mainly indigent and they're people of color, right? Um, so fear, power imbalances, lack of knowledge, and what the system has already done to them, right? How the system has treated them. So fear, nobody wants to be labeled difficult, right? Um, I in my chart, and I you I look up my chart every time, I am challenging difficult combatants because I ask a lot of questions, because I'm my wisest in my chart, and then I ask for it to be changed. Um, so nobody wants to be scolded for asking a question about their own body, about the results, um, so and you know, and so on. So they don't ask, right? Oh, that happened the last time or the second to last time. So the fear of it coming up, they they just don't ask. Then then there's the power imbalance. Um, medicine, as we all know, has a hierarchy problem, right? Um, it's really evident, even just the weight. The doctors walk through the walls, nurses treat them, you know, the there's that whole power imbalance. We wait for doctors, we don't wait for other people, right? The doctors know it's best culture, um, is not just uncomfortable for patients. Uh, for marginalized patients who already face discrimination, questioning it feels very dangerous. Um, so patients talk themselves out of speaking because they um are um if they ever open it, it feels again just very dangerous. Patients talk themselves out of speaking before they ever even open their mouth. I've sat there and witnessed it over and over again. I've said, okay, tell me what's the worst thing that can happen if you ask that question. Um, they won't answer it. Okay, they don't answer it. What happens? Right? Will they like the floor open up and it's gonna swallow you? And they worry, they will sound foolish, they're gonna use the wrong words, the wrong terminology, or they're just gonna be wrong. So again, they just don't, they don't see anything. And then lastly, there's the lack of knowledge, right? Not understanding what is happening in their own care and being too intimidated to ask for clarification. Again, this is not a patient failure, it's a system failure. And I found in the work that I do, right? So I'm I'm just going, uh, this is the population that I work with, um, is these are the four things um um that I see a lot. So now, Leslie, what so what is the system? Um, what the system has the the fourth thing is what has what the system has done to them when the patients have spoken up and they've been dismissed, um ignored, or discriminated against, they learn, right? So now they're being sort of like indoctrinated, right? Um, they learn that speaking up does not help and might make things worse, right? Um, and I'm gonna tell you, this has happened to me. Uh, on a day where I had lupus sprain fog, I'm like, oh, this this mother father just like just treated me some kind of way, then I'm in my feelings, because I'm a woman of a certain age, and then I I'm like, and then I'm like, wait a minute, my name is Olga Lucia Thoris, attorney at law, and I teach at this medical. No way, permit it. Then, you know, but it happens, you know, it can happen to any of us. So that is not resignation, right? This isn't a rational response to a pattern of harm, right? So when staff are visibly rushed and overwhelmed, we see that SED, we see this at clinics. I take a lot of patients to clinics. We even see it at ICU. The alarms are going off. I'm going up to ask for something for somebody, the alarms are going off. I'm like, oh, I guess my thing is not that important. I go back and sit down. Patients read the room, right? We learn. So they decide their concern is a burden, that is important, and that calculation can cost lives, and certainly it means you we don't get the care that we're supposed to get.

SPEAKER_00 30:35

You are certainly right about that, and you brought up a very good word that we all need to pay close attention to. And when I say all, I mean exactly that all of us, whether we're a patient, whether we're a caregiver, whether we're a provider, whatever role we fit into when it comes down to the patient, and it comes down to the healthcare system, and that is this systemic. It's a systemic issue that can only, you know, to me, one of the things that it's I don't want to say it can only, because I'm one that believes in options, so I don't want to say it can only. But one of the things that we have to do if we want to break that systemic mold into tiny little pieces where it doesn't matter what the system does, but what's happening is that patients are getting real-time help. Is this we have to educate ourselves? And if we're not educated, the systemic issues are going to keep occurring over and over and over again. It might rename itself, but it's still gonna be the same issue coming back at you. It's a systemic issue, and we all have a hand in making sure that those systemic issues, if they don't completely dissipate, at least decrease to the time, you know, the least decrease to the point where they don't make a difference. Because right now, they're making a huge difference, and they're making a huge difference or not just one race of people, or not just one gender of people, or not, you know, social economic factor involved, but across the board is systemic issue that's tied to all five social determinants of health factors, which unfortunately only a few, only one really gets the light that needs to be shined, and that's health literacy. But there are four other factors that are tied into what's going on right now with our healthcare system, and unless we get busy with educating everyone about those factors, it's just gonna keep reoccurring and reoccurring.

The HEAL Framework For Appointments

SPEAKER_00 32:48

My next question to you, Olga, is this you often talk about the power of documentation and preparation. What are practical steps patients can take before an appointment to strengthen their voice?

SPEAKER_01 33:01

Okay. So I'm plugging my TEDx talk, but it was har horribly recorded. So I'm gonna briefly, as briefly as I can, please stop me at any point. Um, I advocate, I I've worked really hard, I tried to come up with an acronym, and the acronym is HEAL HE A L. The H stands for honor, um, the patient should honor their and their doctor's time by coming prepared for their patient, uh, for their appointment. The E stands for expertise. The patient is an expert in their own body and medical history. The A stands for assemble. The patient should assemble their own healthcare team outside of the hospital. And the L stands for listen. The patient should listen to their doctor and make sure they understand what is being communicated, not just nod in agreement. So let's quickly go through each of them. Okay, so how are you going to honor your doctor, your and your doctor's time? A primary care physician spends on average 13 to 60 minutes per office visit. As we know, weeks, if not months, can pass before the patient, um before the patient makes between the time the patient makes the appointment, and we hear the doctor will see you now, at least in New York City. So you have time to prepare. And I advocate creating what I call a medical resume. You can download one from my uh website, it's my name, olductores.com. I have a long form and a short form. The medical resume lists all your pertinent biographical information, it lists medical diagnosis, allergies, uh the dates you were diagnosed, it shows O'Current and all medications because someone who's left with a seizure disorder for my brain injury. If I don't put it down, I'm not going to remember that they tried anti-seizure medic and I failed it, right? Then I'm spending time trying it again, right? And maybe with age, I don't remember things, right? Um, and other relevant medical information. I also recommend joting down questions, and there's space there that you have and things you want to remember to tell the doctor. And as we all know, if you don't put it down, the minute you walk in, you're likely to forget it, right? Things start moving fast, the doctor asks other things, and you you you're gonna forget it, right? I also advocate making use of the patient portal, checking your labs uh to prepare questions ahead of time, right? Sometimes we get our labs done before, or sometimes you want to check your labs from the last visit that you want to ask about. And I also do some informed online research, as long as you remember that AI hallucinates, right? So don't be too wetted to AI. Um, so that's that's um honoring your your time and your clinician's time. So be an expert in in your body and your medical history. So the patient knows more about your body than your your clinician, right? You know what fabrics make you itch. You know if you eat red sauce after a certain time, your stomach is not gonna be happy. Um you you get what I'm getting at, right? So um, as someone who um accompanies many family members to visits, I am and I am shocked that doctors say, when did your symptoms start? I don't know. Um you have a knee pain. If you put it up, is it better? I don't know. Does it hurt more at night? I don't know. And oh my, what are we doing here? We've waited forever for this visit. So be an expert in your body. You don't have to pay close attention. This is not a 007 mission. But come on, be a be aware of your body, right? Um uh know when something started, know what makes it better, what makes it worse. Know what aggravates the symptoms. And as Sandra said, jot that down in a journal, it could be in the medical resume, you could put it in your notes section on your phone, write it down somewhere in one place consistently. My husband is likely not gonna see this because he's a high school special education teacher and he's up until one in the morning. He has a post-it here, a post-it note, three journals. Don't be like that, keep it all in one place. Um, with this way, um, you know, you have it all in one place. Also, if you don't, then when you come in and you're trying to remember and you and you see the white coat, you might fall um victim to the white coat syndrome. And for anybody who doesn't know, we get sometimes overwhelmed, a little afraid of the white coat. We're like, oh, they're the doctor, and I'm I'm sort of stammering and I'm taking up too much time, so we zip it. But we have to get over this white coat business, right? Especially because um the most recent study shows that the minute the doctor says, Hey Sandra, what'd you come see me for? Sandra's like, Well, doctor, I have this knee pain, obviously, I have a lot of knee pains. The doctor will cut off Sandra on average within 11 seconds. Some doctors will cut her off as short as five seconds. And the minute we get cut off, we are already feeling like, oh, well, what I have to say is not important, and it's really hard to get back to why we came to see the clinician, right? So that's why writing all that down and being an expert in our bodies is so important. And that journal Sandra was talking about is really critical. All right, so why are we assembling our own health care team? If we think about it, most clinicians collaborate with the team. They are checking in with a range of professionals, with their colleagues. Um, they're checking in about diagnosis, treatment, they're checking in with billing. We know they're checking in with billing, right? So, what about us? Um, shouldn't we have our own health care team? Um, of course we can, right? Of course we we should. I mean, sorry. Um, ideally, patients should bring a friend, as has been said so well here, a friend, a family member to their visits. This person can ask questions that we've forgotten. Really importantly, they can take notes uh and be there to support the patient. Don't bring your mama, your auntie. For me, not the person that's like, Ay, Dios mío, no, no, no, you don't want that person. Um, you want the person that's calm, collected, right? The point is for patients to have a group um of uh their peers who can help them make medical decisions and help them process what the doctor has shared with them. And and for me, it's like do I start this chemo for Lucas? Do I stop it? Do I have a surgery? Things like that, right? These individuals can, more really important, can assist the patient in navigating with health insurance, right? To attain an approval, to appeal a denial, things like that. Last one is listen, right? L for listen. Um we often nod with the when the doctor's speaking and giving instructions, right? But are embarrassed to admit that we're confused, we don't understand, or we're scared. Really important. My dad was one that was scared and he would just nod, and a bunch of wars. There's my daddy from one of the wars, and he would just nod in agreement and then be like, I'm not gonna do what he said. And I said, So why'd you say yes? Oh, well, you know, I didn't want to be disrespectful to the doctor. So it's really important to ask those important questions, right? So a really good tool that I'm sure a lot of people here know is the repeat back method. The patient repeats back what they heard, make sure that you understand what was said, what tests, what medicine, what tests you're gonna have, what medicines you're gonna take, you know. You get what I'm saying, and summarize the encounter in front of the doctor. And I have to tell you, again, I teach doctors. When I summarize, the doctor's like, that's not what I said. I'm like, well, dude, that's what I heard. So break it down for me again, right? Don't be embarrassed. Just like, well, obviously got lost in translation. Oh, sorry, we're not speaking the same language. So, again, explain it to me again. Spanish, English, I mean Spanish was my first language. Um, this is really important because another study showed that more than 50% of physicians forget to tell patients uh the dosage of a new medication, how long they have to take it, and any side effects. And I've had so many pills um uh the the pills where vitals come in that says prescribe, take as prescribed. It wasn't, it wasn't, um, nobody told me how to take it, right? Um, and that that's why it's so important to speak up and ask for clarification because the doctor-patient relationship needs clear communication and attentive listening.

SPEAKER_00 42:25

And then thank you

Trust Tools Repeat Back And Ask Me 3

SPEAKER_00 42:26

for that. And you know what, what the doctor-patient relationship needs more than anything else, which leads back to your earlier statement, is trust. If you do not trust your doctor and you're leaving your doctor's office saying, I'm not understanding what they said, so I'm just gonna either self-medicate or not medicate at all. You're not hurting the doctor because the doctor's not gonna know that you're not taking that medicine or that you're taking it in an incorrect way. If unless you show back up at his or her office with the same condition, and they're gonna say, well, did you not understand what I told you to take this? So if you don't trust the doctor, you're never gonna understand anything I think. It's just to it's up to you. Once again, it's being the leader of your healthcare journey to say, hey, let me go find somebody else because I'm not understanding him or he's not understanding me. However, it's working, you have to have that level of trust with your doctor. If you don't have a level of trust, you do not belong with that doctor because it's only gonna hurt you. So please keep that in mind if you know when you use it. And a lot of times what a doctor won't do is and it might just be because now for the past team years, um, medicine health medicine hasn't, the doctors haven't been able to spend the time the quality time they wanna spend with their patients unless you're gonna talk to your doctor, which is a subject for a different story. But if you're going through the traditional healthcare system where you gotta make appointments, get referrals, do this, that, and the other, whether it's dental or medical, a lot of times they don't have the time to spend with you, which is why we're encouraging them to write it down. But they don't have the time to spend with you. It's not a misnomer to them. So sometimes they might not be able to say, hey, you know what? Did you understand what I said? So before you leave that office, what you need to be doing is saying, hey, Doc, let me get this straight. This is what you want me to do and let him know this is what I'm hearing, so that if he's wrong, they can stop you and say, that's not what I said. Okay, so repeat to me what you just said. But if you're not opening up your mouth and saying anything, we can't blame the doctors if you're not using your voice because they're not mind readers. We can only blame ourselves. So we have to get comfortable with actually using our voice because it's the most important tool we earn that we own.

SPEAKER_01 45:02

Sandra, you make me think of in oncology, they came up with the ask me three, ask me the three questions, and they are um, what is my main problem? What do I need to do, and why is it important for me to do this? Um, which is because in oncology they get that really bad fog brain, chemo so terribly. Yeah. My mom would shower, come out, get dressed, and then say, Oh no, I got dressed without showering. And then she would get really defensive, and I'd have to show her her damn towel, you know. But um it's really helpful in terms of like, you know, they bring a card, they have a card they carry with three questions, and it's been really helpful for communication, right? Um, to really address like what is the main problem in this like engagement that we're having. What do I need to do? Like, what do I need to do next? Like, what is happening, and what is important, what why is it important for me to do this? So that there's really concrete and really also um keeps it in one appointment, right? Not like in life, not in my treatment, but like what are we doing now in this? Um, and they give examples of patients that like she came two weeks ago, she wasn't feeling well, she had back pain, the cancer was recurring, right? Um, not my mom, just like in another example, but I think that that's really helpful thinking about why you really need to take the onus in terms of like whatever your three questions are that will help you ask clarification.

SPEAKER_00 46:42

Thank you so much for that. And you're and you know what, we when we look at it across the board, we look at best practices, the oncology card that you just mentioned, that's a best practice that more it and it doesn't cost much to post that up on you know one room or whatever to post that card up to remind. Not even just reminding the patient, but reminding whoever's coming with the patient, um, hey, ask these questions so that they can be asked because very often we don't think that way. But it's once again, when it comes to best practices, that's definitely a best practice that I'm stating that I know would work if we have more cards like that posted throughout the hospitals, posted throughout the doctor's office to not only remind the patients, but remind the providers. Did they ask these questions? If they didn't make sure they know it before they leave out of this office, that's a very good um and a thank if you're an unc in the oncology department and you're looking at this. Thank you so much for being that, you know, being that point person that says, hey, we need to make sure they're asking these questions. My next question to you is this, Ogre.

Advocacy Burnout And Mental Health

SPEAKER_00 47:57

Self-advocacy can be exhausting, especially for those managing long-term conditions. How do you yourself balance advocating while also protecting your mental health?

SPEAKER_01 48:10

So I first I want to name that the question is really asked, what the question is really asking, and that is about balancing, right? How do we balance what we are all carrying, right? And a lot of us are often patients, we're often also caregivers, right? That's usually what um um moves us to go into this work, right? Um, and so um, and I'm answering this from a three from three seats at the table, right? Um, and anybody could have deciphered that I'm a patient, uh, I and I'm and I'm a caregiver. And I continue being a caregiver. My mom, my mom, my dad, and um, and my grandmother are uh have passed away. Um, so the cost of this work is not abstract to me. I live it from every angle. The honest answer is that self-advocacy has a cost. I'm pretending otherwise has uh does a disservice to the people we're trying to reach. The reframe I use is this advocacy is not a sprint, you run every single um appointment. It is a practice you build that is a practice you build so that over time it takes less out of you. And that took me a long time to figure out because I went hard. I went hard, I went hard, um, and I went long and I ended up hospitalized. Um it takes so that yes, so that it takes um less out of you over time. Part of that is preparation, knowing your rights before you walk in means you're not burning energy in real time, figuring out if you're being dismissed or if you're overreacting. And I'm quick to think that um someone's doing my patient wrong. Um, part of it is community, right? You can't you can't uh you don't have to carry it along. That's why peer networks, patient collectives, trusted advocates matter. You borrow capacity from each other. Um, part of it was joining organizations and learning um what the FDA was doing, what the Clinical Trials Transformation Initiative was doing, um just joining the PEC to stiffen organizations so I learned more about the legal aspect, so I there was more patient voice in those. Um I don't know how much of an impact it had, but I felt more empowered in doing that. Uh, and part of it is of it is permission. Permission to say not today, to send someone else to write it down instead of saying it out loud. Self-advocacy includes knowing when to rest the voice. Uh, a couple of months ago, I was um I got a new diagnosis, and I thought I don't have to stop, I just have to get that biologic. But I my insurance denied me, and the patient assistance program denied me. And I got so sick that I ended up in bed, almost to the point of being hospitalized, and I had to step down from uh various boards, various leadership roles in the advocacy world, and it was really, really hard to say I can't do this, not right now, and um and I'm I'm really happy to report that I am back to almost full capacity in the work that I'm doing, and I'm um and I'm slowly taking patience again. But that's really hard to say out loud because um when people call to say, This is happening, can you help? I had to say, No, not me, but I have this other person. Um, and they were like, oh, but they're Spanish speaking. And I was like, I you know, I have to believe I'm not the only Spanish-speaking person that can do this work. The system will always ask more of you than it should. And the skill is deciding what you give and what you protect. I am not great at protecting myself, and I am learning every day how to do it.

SPEAKER_00 52:30

I thank you so much for that, and I thank you also for you know going doing what you have to do to maintain that balance because we all need it. I'm at, you know, a critical point right now with you know, with the business group, with our business growing, it's like, okay, so I'm accepting invitations and I'm like I'm only one person and I can't do all these invitations. But like everyone that contacts me and says, Sandra, can you do, can you do, can you do? My heart is there, right? It's like our hearts are there. Um, and we have to actually, you know, find that balance and say, hey, I can't do this, this, but if you can do that, this is how we can do it to get it done. So please continue to, you know, respect that balance and respect that boundary and saying, no, I can't do this. Not today, you know, I can do somebody else. And that's what collaboration is important for us, is to collaborate with each other so that if we can't do something, it doesn't get undone, it just means that we have a partnership that we can pass that off to and say, hey, this is what's needed. Can you help out? If we and if we don't have, I'd say all the time, collaboration is key. If we don't have that collaboration and each one of us is now out here on the aisle and on our own, who the patients don't get help? We don't get help. Nobody wins in that situation. So we have to learn how to collaborate.

Build Capacity Language Access Rights

SPEAKER_00 53:57

And then my last question to you is this can you give us a takeaway point that patients, both patients and clinicians will be able to use going forward and navigating through these difficult times that we're in when it comes down to our health care journeys?

SPEAKER_01 54:15

Um, I'm sorry, say it again.

SPEAKER_00 54:18

What is for caregivers, community leaders, and patient advocates watching this session, what is one shift that they can make today to better support individuals who are navigating complex health journeys?

SPEAKER_01 54:34

Oh, um complex health journeys, you know, for me, um, so the one thing that I think is critical is that we stop speaking for people, start building their capacity to speak for themselves. It means meeting people where their knowledge already lives, they know their body. The work is helping them, the work lives in helping them learn how to make a system that wasn't built for them, listen, right? So, how do you listen to them instead of um doing it for them? Uh, for communities navigating language barriers, this is especially urgent. When a patient with limited English proficiency relies entirely on family members to interpret, two things happen. The patient loses agency, and the caregiver carries the burden they were never trained to hold.

SPEAKER_00 55:36

For caregivers, community leaders, and patient advocates watching this session, what is one shift that they can make today to better support individuals who are navigating complex health journeys?

SPEAKER_01 55:51

Um so, in the work that I do, what I think um would really help is um to stop speaking for people, right? Start building their capacity to speak for themselves. It means meeting people where their knowledge already lives. They know their body. The work is helped, the work I think lives in helping them learn how to make a system that wasn't built for them, listen, right? How do we how do we get the system to actually listen to them? For communities, sorry, for communities navigating language barriers, this is especially urgent. When a patient with limited English proficiency proficiency relies entirely entirely on a family member to interpret, two things happen. The patient loses agency, and the caregiver carries a burden they were never trained to hold. I interpreted for my family since I was very, very young. I wasn't supposed to. No one brought in an interpreter. I interpreted for some a woman in my building at six years old at a cardiology clinic at Elmhurst Hospital. And all I managed to interpret was, you have a problem in your heart. The woman needed open heart surgery, right? We later learned in the building. But oh and the cardiologist spoke to me because I spoke in English to the cardiologist. All I could all I did was take her with a piece of paper to make an appointment. That that is not a burden we should ever put on children. It certainly is not fair to the woman because the woman didn't understand what was happening. Language access isn't a courtesy, it's a legal right. And most patients don't know that, and that's the gap I work in. The shift is from proxy to preparation. And now I'm talking about all patients, not just limited English proficient proficiency patients. You don't have to be in every room, us as patient advocates. You have to be, you just have to make sure the person knows how to hold the room themselves. That's what the professional patient framework is built in, built on. Sorry. Self-advocacy isn't a personality trait, it's a skill, and it can be taught.

SPEAKER_00 58:15

And with that being said, oh god, I do want to take the time to say thank you, thank you, thank you so very, very much. This was a discussion when we put when I asked you, you know, if you wouldn't be a uh podcast guest when speaking with Sandra L, the patient experience. I did so knowing that there was, you know, you in LinkedIn, you put out so much beautiful work and so much wisdom and sharing examples and case studies. And I'm like, this has gotta go outside. There's more people that need to know this. There's more people that need to know that. There are other people that care. There are patients out here that are going through very difficult times thinking that they're alone and they're not alone, but they're thinking they're alone because they they're not exercising their right to use their voice when it comes to medical care and it comes to health care. They're not using their voice and they've gotta learn their voice. What you teach and what you preach and your teachers, you know, in your post on LinkedIn. It's the same thing that I do on my post, the same thing that I do when I go out and I speak about patient advocacy, is this. We preach and we teach the art of self-advocacy. This is an art. It's not going to something with art, you gotta learn different things. What colors go together, what words go together, how do you do this and how do you do that, right? It's an art. And so we teach that art. You were gonna say something.

A Godfather Learns To Push Back

SPEAKER_01 59:47

So um I want to give the example of my of um my godfather, who was like a a second grandfather. He he made it to I think fourth grade, right? He didn't really know how to read, never learned English. Uh, he died at uh he made it to 86. He died a year and a half ago. And um he was very embarrassed, super deferential to doctors of doctors. And we slowly built, I slowly helped him build up the ability to speak, communicate through an interpreter. He would say, but you're here, I don't want the use of interpreter. And I would say, I can translate body parts, but the particulars of the surgeries you have to have, the particulars of what's happening with the dialysis, I cannot translate. So let's let's have that interpreter because I wanted him on a day that I was teaching or doing something and I couldn't be there, I wanted him to really know how to make use of the interpreter, and to see him transform into an amazing self-advocate, to be able to push back on the doctor and say, But you told me last visit that my numbers were improving, why are they so bad this visit, right? To just see him, just me just be there like this or like this, just so proud. And he would look at me and say, Why are you smiling? And I would say, You don't even need me here, but I'm so happy to be here. Now I saw his health decline, decline, decline. But just to see him be that person, and when he could barely speak and he was there, he would go like this, and I would say, You want me to fight more? And he would put his thumbs up and I would say, Okay, what do you need? And he would show me that he wanted a pudding, and I would say, you know, you're you can't have anything in your mouth. And he would say, I don't care, I'm dying. Like he would say, I don't care, I still want. So you know, like just to see him advocate literally hours before he died, just was something that you know just really, really moved my family. But it's it is a skill that even fourth grade education-level people that came from another country can do here. Like it is really it did not, he didn't take a course, it just takes incremental steps, and you can really do it. And it made a huge difference in his care.

SPEAKER_00 1:02:09

And what I'd like to say before I close, because there's nothing else for me to add to this, well, there's two things is one, that's what we need to see. We need to see a patient uprising that looks just like your godfather standing constantly with your either hands crossed, you know, like, hey, I'm in control here. This is what we're gonna do. I'm the patient, I have the power and exercising that power. But before we go, what I do want to say to everyone is what I always end my podcast

Be Kind Always And Closing

SPEAKER_00 1:02:39

with. Be kind always. You never know what someone is going through. So it helps you and it helps the other person to be kind always. It's free. We look for free stuff. This is free. Being kind is free. So please exercise that right to be free and please exercise that right to use your voice when it comes to your healthcare journey to take the lead. Thank you, Olga. I appreciate you.

SPEAKER_01 1:03:05

Thank you.

SPEAKER_00 1:03:06

Have the rest of a great day. You too. All right, bye.