When Doctors Don't Believe You: How To Stop Medical Gaslighting And Win

We talk with Dr. Julie Siemers about what medical gaslighting looks like in real life and why it can lead to preventable harm. We share practical scripts, red flags, and patient safety moves that help you protect your health without losing your voice.

 
• defining medical gaslighting as dismissing symptoms and failing to listen
• why miscommunication drives so many patient harm events
• real stories where dismissal leads to near-disaster outcomes
• what to say when a clinician rushes toward meds or procedures
• questions that reopen the conversation
• five red flags that signal you are not being heard
• how to prepare for appointments with a medication list, allergies, and a tight symptom summary
• why bringing a trusted person can beat taking frantic notes
• caregiver advocacy when a loved one is sedated, confused, or has dementia
• what to do when you feel pressured, threatened, or blocked from leaving
• how to stay calm and factual so you do not get dismissed as “emotional”

Chapters

• 0:00 Why Speaking Up Saves Lives
• 4:35 Defining Medical Gaslighting Clearly
• 5:28 Real Stories Of Harmful Dismissal
• 16:55 Scripts For Talking With Your Healthcare Team
• 21:40 Red Flags And What To Do
• 30:54 Preparing For Appointments
• 33:05 Records Notes And Bringing Support
• 38:14 Caregiver Advocacy And Informed Consent
• 44:26 Life Support Pressure And Your Rights

https://drjuliesiemers.com/safeguard-health

DrStellaMD Marketplace
Immune-boosting protocols Premium all-natural supplements Telehealth + wellness consultations

BeRootedIn
RootedIn: Magnesium Cream. Shop Now With My Affiliate Link

Ready Hour & My Patriot Supply
Best price on US-based preparedness and long-term storable food. Shop now with my affiliate link.

Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.

Transcript

Why Speaking Up Saves Lives

SPEAKER_00 0:00

I want to leave you today with the mindset that you must get informed, become educated, and speak up because that's the way we're gonna make the system safer.

SPEAKER_01 0:12

Medical gaslighting can also come from bias, time pressure, virtual signaling, or a failure to truly listen.

SPEAKER_00 0:19

Medical gaslighting is a lack of listening and dismissing symptoms.

Meet A Nurse Educator On Safety

SPEAKER_01 0:25

My litmus test for whether or not I'm being gaslit or just have a difference of opinion is if the doctor tries to make me feel like I am wrong, I am not in my correct mental state, or that they know better about my body because they've been to medical school and I haven't, that gives me a little gut feeling that says maybe I'm being gaslit by this doctor. Today's conversation on new normal big life may feel like an indictment of doctors and the medical system, but it's not meant to be. I interview two to four doctors every single week who are exactly the kind of humans I want beside me in my life or the life of someone I love if their life were on the line. And yet, far too many people have been dismissed, minimalized, or harmed by medical gaslighting. That really matters because it costs people time, trust, and sometimes their health. My hope is that this episode pushes clinicians to do better, empowers patients to speak up sooner, and reminds the good doctors out there that what they do matters deeply. We are living in difficult times and they are only going to get harder. That means we need to be strong in every possible way, physically, emotionally, and spiritually. It's time to reclaim your health, trust, your instincts, and refuse to stay trapped in the medical gaslighting cycle. Hi friends, welcome to the New Normal Big Life Podcast. We bring you natural and integrative health information and stories about nature that we hope will inspire you to get outside an adventure, along with a step-by-step plan to help you practice what you've learned to create your own new normal and live the biggest life you can create. I'm your host, Antoinette Berafato, the Wellness Warrior. Let's get into today's topic. Welcome to New Normal Big Life, Dr. Julie Seymours, best-selling author of Surviving Your Hospital Stay, a Nurse Educator's Guide to Saying Safe and Living to Tell About It. Dr. Seymours, why don't you tell us who you are, what you do, and the one big thing you want to leave us with from your expertise today?

SPEAKER_00 2:37

Thank you. Thank you so much for having me. Yes, I concur with everything you just said in the beginning of this episode and explaining why we're here and why we're honestly having this conversation. I've been in the nursing profession at the bedside for 30 years. And then in the last 17 years, I've been in nursing education. So 47 years in this industry. And what I have seen since I started my research on patient safety back in 2009, studying for my master's degree and then my doctoral degree, I was shocked to find how many patients are harmed in the healthcare system that's really set up to make them better. And my perplexion was why haven't I known about this? Why haven't we talked about it? So then I started down the journey of what can I do to contribute? Because I've got all this knowledge, this experience. And I'm approaching it from two perspectives: helping the nurses learn what they failed to pick up in school because nursing school is so fast and furious, and it's like drinking from a fire hose. So there's a lot of concepts that they really didn't learn well, and that contributes to patient harm at the bedside. But I'm also approaching it from the perspective of the patient and family, because even in this culture that we live in, it isn't really supported to speak up and say what you're thinking, what you're feeling, what you're observing. But I want to leave you today with the mindset that you must get informed, become educated, and speak up because that's the way we're gonna make the system safer. It's a two-pronged approach. It isn't just relying on doctors and nurses. And so, no, you don't need to get a nursing degree, and no, you don't need to go to medical school. We're gonna teach you at least enough to empower you. And that's my intent.

Defining Medical Gaslighting Clearly

Real Stories Of Harmful Dismissal

SPEAKER_01 4:33

I'm so excited for this conversation. And so, for those unfamiliar, medical gaslighting, it's what happens when your symptoms, your concerns, or your lived experiences are brushed aside, they're minimized, or you treat it like it's all in your head and not a real condition. Instead of being carefully evaluated, it can leave you feeling confused, dismissed, and even doubting yourself, which is exactly why it's so dangerous. And most of the time, it's not always intentional. As we learned in my interview in season two, episode 61, Dr. Stella Emmanuel, the Take Back Your Health movement. Medical gaslighting can also come from bias, time pressure, virtual signaling, or a failure to truly listen. If it's happening to you, you're not alone. It happened to me. And Dr. Julia Seymours will help us know what to do about it next time. So, Dr. Seymour, I found some powerful social media posts featuring firsthand personal stories of medical gaslighting. Each one involves a patient whose symptoms were dismissed, minimized, or labeled as psychological or stress-related, only for serious issues to later be confirmed or nearly fatal consequences. Let's unpack some of these and help us understand what happened in these situations, if you can. Yes. I want to give a shout out to all of you on social media for bravely sharing your gaslighting experiences because there's a fair amount of pushback from other patients who say doctors are wonderful, they save lives, and they're discounting the person's experience. So online I read a post that said, when I was in middle school, I tore my trapezius muscle, and the pediatrician admitted me to the hospital to have my spleen removed. Thank God my mother signed me out and took me to children's hospital where they treated me for torn muscle. How could that happen? And what could that mother have done? Well, actually, she did a lot of things right, but what more could she have done?

SPEAKER_00 6:40

Yeah, she did do a lot of things right. And the first thing she did was pay attention and listen. And if she did not know what this wrong surgery scheduled was, and if she would have assumed, hey, the doctor knows what he's doing and not caught it, that could have been a disastrous outcome, right? So I think, and just to reiterate, we probably talked about this before, but 70% of patient harm events are due to miscommunication. So when we talk about the communication that goes back and forth through patients and families and healthcare providers, nurses, doctors, radiologists, whoever, it is really important to remember that because as you mentioned, there are multiple ways that we can misunderstand or not be heard. Or she did wonderful in listening and probably asking questions like what does that mean to get the right care for her son. So kudos to her. Awesome.

SPEAKER_01 7:34

So another reader wrote, I told doctors told me I was mentally unstable, disrespectful, and lying because there's no way I had the symptoms I was describing because I would be incapacitated. I have actually been in that same situation. What's happening here? Why don't they believe that maybe some people have a very high pain threshold?

SPEAKER_00 7:59

You know, that's a really good point because in medical school, just like nursing school, we are taught to go with the most likely diagnosis because there's so many illnesses, so many pathological things that could happen. And yes, do psychologically do we influence what's going on in our body? Yes. And those all can be true. But it is truly, again, a lack of listening to the patient to even be open to what could this be? So that's one of the questions I teach patients and families to ask. Could this be something else? Could this be something be more dangerous and scary or harmful than what we're assuming? And a lot of times it's to clear the emergency room or to hustle through, you know, if they're booked in the office every seven minutes, then how can they even listen and hear what the patient really truly has going on? So again, from a patient's perspective, the really important thing is to highlight those things that are really the most disturbing to you, whether it's I've had these palpitations for three days, of course, that's not normal. You know, and kind of highlighting those most important things that you want the doctor to listen to. So making your conversation as succinct as possible, too, will help. That's a really good point.

SPEAKER_01 9:21

If you have to say, like I said, you don't need to say it again because you've already said it. That'll just save some time. So here, Brandon X, thank you for sharing this, said, I was in a car accident and went to the emergency room. The doctor looked at my x-rays and told me, I'm fine. Take some Advil and quit being a wimp. I'm paraphrasing. About a year later at a chiropractor, because the pain never went away, he asked me when I had broken my back. How could that be missed in the initial visit? Or sorry, how could I have broken my neck? was the question.

SPEAKER_00 9:59

Wow. So radiology is one of the areas where misinterpretation can happen. Even with something like CAT scans, something may not show up for a day or two, but obviously on the X-ray, you should see a broken bone. But it could have been like a hairline fracture that got missed. And speaking of that, there was some news recently about one of the major hospital systems that is trying to replace radiologists with AI, artificial intelligence.

SPEAKER_01 10:27

Wow.

Missed Injuries And AI In Radiology

SPEAKER_00 10:28

Which stuns me because I think they should augment, but you still need the human factor, the human eyes, the human experience. So if AI can see something that we didn't, that's amazing and wonderful. But we also know AI can hallucinate, can make mistakes. So I think if I were to give advice to anybody that that happens to, if you continue to have pain longer than a day or two, you have to go back and advocate for yourself. We can't assume just because a doctor said it's normal that it really is. So, Dr.

SPEAKER_01 11:01

Seymour's exactly what was happening in this room from a clinical insider's point of view, when recently I went to the doctor and he said, I don't see anything. I'm going to prescribe medication for you. And then he moves toward a biopsy without reviewing my medical history, checking to see if I'm on any medications, or getting my consent to the prescription or the procedure. And what should I have said in this situation word for word?

SPEAKER_00 11:30

I would say, slow down. Help me understand why you feel I need a biopsy. What is the medical judgment that you are using to make that decision? Because I need to be involved in this decision, whether I even want a biopsy. Tell me what we're trying to accomplish here. That is your patient's right. There's a bill of rights that we have as patients. And to understand medical procedures, medical decisions, we have to be that back and forth saying, help me understand. And then you get to decide if that's something that you want. You know, and when it comes to medications, because that was part of your question as well, understanding the purpose. What do we hope to accomplish with this medication? What should I watch for? What are the side effects? Medications are not just harmless. We know that even Advil and Tylenol can be toxic in the body. And those are sold over the counter. So we have to do our due diligence, look things up, ask questions, and just get informed.

SPEAKER_01 12:29

Well, it sounds like I handled things well. And I did report the interaction with their corporate headquarters who said they took it very seriously and pointed out that if you go online, there are many other patients who've said the identical thing that I've said. So this is true as a pattern. Yeah. So what are what are five red flags that signal a doctor's not actually in your corner, even when the conversation still sounds polite and friendly on the surface?

SPEAKER_00 13:00

If you don't feel heard and they're speaking medical language, medical jargon, big words, you don't know what they mean, you can't be embarrassed to speak up and ask. Just say something simple like, can you explain that to me like I'm a fifth grader? And that gives them that gives them the that's how basic I need to hear it because it's foreign language to me. And I think that's a good starting point is just to say, help me understand this. But rushing you is also something that makes you feel unheard or misunderstood. And it should be a back and forth. You know, I'm if you say, I've been having these heart palpitations for a couple of days now, it's really concerning me. The answer back should be something that you can understand and agree with, meaning, well, it could be this. Let's get an EKG, which is not invasive. So yes, I would definitely agree to that because you want to see what the heart rhythm looks like. Are your vital signs commensurate? Meaning, if you've got a fast heart rate and it's impacting your blood pressure, that's a bigger problem than if it isn't impacting your other vital signs. So that should be part of the information gathering. And we call that clinical judgment. You can't make a decision about how critical or stable a patient is based on one factor. So the clinical judgment is gathering the data to say, this is now creating a picture for me as the practitioner, and that's what I'm sharing with you as a patient. Well, that's so impactful.

SPEAKER_01 14:33

So you're at the doctor's office, which sometimes took weeks or months to get the appointment, and you tell your doctor something, and then they're looking at you like you're wearing a tenfoil hat. This happened to a listener named James. And James, thank you for sharing your story. He had proof from a big box store that he purchased a product that contained listeria. He had a photo of the package that confirms he consumed the tainted product and he had symptoms of listeria that he looked up. And according to the National Institutes of Health, he had contracted listeria. So he told his doctor and offered her the proof. And without reading it or asking any questions, she said, What are you some kind of conspiracy theorist? Listeria doesn't happen in the United States. That's a third world problem. That day, James never got treated, and later he developed listeriosis, a more serious condition. So what could James have done differently?

SPEAKER_00 15:34

Well, I would definitely try to get her attention and saying, I disagree with you. I've done my research. You just kept pushing gently, politely, and if still did not get any conciliation from the doctor on, okay, well, let's do a test or let me give you some medications, I would go to another provider. And as you become unstable, meaning if your symptoms are getting worse and you can't get into a general practitioner or family practice, you might have to go to the urgent care. Because as you said, that escalated to something that made him very sick. And it didn't have to be that way. But again, patients don't know. Families don't know how much to push or even what to say. But I've created a program for patients and families who's called Safeguard Health. And I've got scripts in there to help, I've got situations in there to help, because you're really entering a world you don't really know anything about as a patient, most of us. And I think if you're armed with tools to understand this is my right to understand my own body, my health, and I get to make decisions, then you'll kind of just get walked on sometimes.

Scripts For Biopsies And Meds

SPEAKER_01 16:45

We'll make sure we put a link to those resources in the show description and thank you for that. And so, you know, I wonder if there are certain messages that get proliferated throughout the medical community, because around the same time that James reported the problem with listeria, I had a similar situation. I had doctors and specialists and in the emergency room all tell me listeria doesn't happen in the United States, even those, like James, I had proof and did develop listeriosis later. So I wonder if there are, I don't want to call it a myth, but certain ways of thinking that just get disseminated out to doctors and then they all repeat the same bad advice or non-advice.

SPEAKER_00 17:34

You know, doctors are so busy nowadays. I mean, they always have been, but I think it's escalated for sure, with insurance companies saying you need to see so many patients per hour or whatever. But I think part of the problem too is that when they went to medical school, even if it was recently, the information in textbooks is outdated before it's even printed. So if doctors aren't keeping up on latest health news, like you said, they may miss it. But I think if that's the way they're gonna be, okay. If they're too busy to read up-to-date problems, then they need to be open. You can't be both. You can't be closed-minded and antiquated in your learning. And that's the kind of provider I want. Let me check into that. I haven't heard that we found listeria in the US.

SPEAKER_01 18:28

Right. You they don't need to know everything. You know, we're all only human, but I don't know that answer. And let me go research it for you, is what I would expect. And what I did when I was in patient care.

SPEAKER_00 18:41

Yeah, for sure. And even if you're in the hospital and a nurse says something to you along the same lines, sometimes they'll fake it if they don't know the answer. And so you can't always rely on that because again, we can't teach everything. But the humble person would say, Let me go find out for you. I'm not quite sure.

SPEAKER_01 19:02

So when you're in in an exam room and the doctor throws up their hands and says, I don't know what you want me to do about this condition or whatever your symptoms are, what did you do next? Because, you know, I went to see one doctor who said that about my persistent shoulder pain. I don't know what you want me to do here. And I was like, Well, I guess we're done then. But the very next doctor said, I know exactly what you want me to do. And he repaired my shoulder well enough to whitewater kayak afterwards.

SPEAKER_00 19:33

Wow. So I would go in prepared. And I did talk about AI before, but I also think AI can be a great tool to say, I've got this pain. Here's what it feels like. Can you give me some options of what this might be? And so when you go into the doctor's office, you're prepared to say, could it be a torn rotator cuff? Could it be just a muscle strain? And then the next question would be, how do we find out which it is? How do we find out which is something that would heal by itself if I quit using it? Or if it's something we need to surgically take care of and ask for different approaches. So go in, maybe a little prepared than you would have before to come up with, well, this is what I learned it could be. What are your thoughts with your medical training, dear doctor?

SPEAKER_01 20:20

So if we're going to the doctor, what are maybe three to five things that we should always bring with us?

Red Flags And When To Switch

SPEAKER_00 20:26

Your medication list and make sure it's current because sometimes physicians will prescribe something and maybe it's not in your medical record in their office. Maybe you see a couple different doctors, a nephrologist, a cardiologist, a general practitioner. We hope that they communicate with each other and we hope that everything is accurate, but it may not be. It's more likely it's not accurate. Your medical history and say, remember, I had this five years ago or 10 years ago. Does that play into what we're discussing today? Would that affect the treatments, the medications? And the other thing of, of course, any kind of allergies you might have, because sometimes that slips through the crack as well. And the medication names, the generics are so hard to articulate to say. I even have trouble saying what some of those are. And so you may be prescribed a medication because you're not familiar with that brand that you might be allergic to. So that I would also ask the doctor if you can record them because they speak so fast and sometimes in that medical lingo that you're not quite sure what they said. And you can say it politely and just say, I want to share this with my husband when I get home. Do you mind if I record this? I'm not going to be able to remember everything you said, and I don't want to miss something important. That's easier than taking notes. You know, you can just hit your voice recorder on your phone, but ask them.

SPEAKER_01 21:48

Yeah. What I have noticed, I'm a brain injury survivor, so it's hard for me to make new memories. And I used to ask doctors if I could record, and they would, because I'm a brain injury survivor, say, Oh, sure, of course. Nowadays, a hundred percent of the time, they say no. They say I prefer you take notes. Yes. So are they gonna stand there?

SPEAKER_00 22:11

Maybe it's a little litigious, I don't know, but are they gonna I mean, that doesn't even make sense. You can't even spell some of the things they're saying, and then you might get it wrong. Jeez.

SPEAKER_01 22:21

Yeah. So I I have recently stopped asking. I think the last time I asked was 2023. Because uh I'm I'm wondering if people are just worried about a lawsuit later.

SPEAKER_00 22:34

Yeah. Maybe. Bring a family friend or a family member with you then and have them tell you. That's exactly it.

SPEAKER_01 22:41

When I have something really, really important in appointment, I bring someone that I can trust, their judgment. So how does a patient tell the difference between a doctor who's wrong about their case or simply just giving them hard news they don't want to hear?

SPEAKER_00 22:57

Ask what they're basing that diagnosis or treatment plan or whatever there is. What are they basing that on? And I would still ask the question, but could this be something different? And how will we know? And then you just have to keep on your toes and you know, do your research too. But if the doctor says we expect XYZ and you don't get XYZ, be back in their office. Get another appointment and say, the treatment isn't working, or I'm not feeling in or better any better, or maybe I'm even feeling worse. I think it's something different than what we originally thought. So I always say be present, be polite, but be persistent. That's easy to remember. Be present, be polite, and be persistent. I love that. And you can also use the cuss words, which are concerned, uncomfortable, scared, and a safety issue. So you can use those with any medical providers anywhere. If you're in the hospital with your mom and maybe she's not acting right, hey, I'm really concerned. My mom is not confused ever, even though she's 80 years old. This is not like her. Can you please come and reassess her? Or I'm uncomfortable, the amount of pain my husband is in. This seems like a lot of pain for what actually happened, or maybe it's worse now than it was. So those help.

SPEAKER_01 24:21

The fact that you're empowering people with language is so wonderful because, especially in the moment, you may have all of these things in your head that you want to say, but then you get flustered because you're trying to keep your calm, or you don't want to be labeled as a combative patient, which I've been labeled, and I'm super polite. And sometimes doctors will say I'm combative because I ask questions, or because I say, Yeah, I understand your recommendation, but I think I'm gonna pass on that for now and let's explore this. And then I've been labeled combative. So having words that we can pull out from your toolbox is gonna be so helpful.

SPEAKER_00 25:07

One thing you could say too is if I were your mother, is this what you would recommend? Or what would your treatment plan be if I were your mother? Is it any different than you're recommending for me? That's great.

SPEAKER_01 25:22

And even if they don't have a different answer, the look on their face sometimes can tell you volumes.

SPEAKER_00 25:29

You know, it's one of the things that I talk about a lot is that we need to get the heart back in healthcare. I think we're so robotics-like in our communication or lack of communication in our treatment between, you know, patients and families and the healthcare team that I think just pausing to think about, you know, the patient in that bed isn't 30B. It's Mr. Jones that has a wife and a daughter, you know.

Listeria Proof And Closed Minds

SPEAKER_01 26:00

Before we cover the next topic in this episode, I want to introduce you to the Adventure Sports Lifestyle with a micro story about an adventure that I've had. The adventure sports lifestyle and my deep connection to nature is essential to my good health. So here's the story. Spring is here, and soon you'll be on the hunt for weeds to pull. But there's one so-called weed that you and your children or grandchildren are going to fall in love with: the dandelion. Transform those pesky yellow weeds in your yard into nutritional gold mines of holistic health. This simple meal prep idea is a kid favorite. Dandelions are often dismissed as law nuisances, but they pack more nutritional punch than kale or spinach, according to registered dietitian Nancy Geebe. When paired with raw local honey, they create delicious therapeutic gummies that both kids and adults love. These bright yellow flowers that I place in a mason jar on my kitchen table in the spring aren't just pretty, they're medicinal powerhouses with roots in traditional healing practices across cultures. Packed with vitamins A, C, and K, plus minerals like iron and calcium, dandelions support liver health, fight inflammation, and help regulate blood sugar. The honey also benefits your gut health. So catch season one, episode nine, Dandelion Gummies Nature's Sweet Secret to learn more about the health benefits of dandelions and my family recipe for dandelion gummies. I hope this inspires you to get outside an adventure alone with friends and the people you love most. Now back to the topic. Dr. Seymours, what's the difference between medical gaslighting and a legitimate disagreement about a treatment or diagnosis?

SPEAKER_00 27:51

Medical gaslighting is a lack of listening and dismissing symptoms, dismissing what the patient feels versus basing it, the decision on maybe something we don't understand because we've not been to medical school. But I think that's where the physician or mid-level practitioner, the physician's assistant or nurse practitioners owe it to the patient to explain it. We shouldn't be sent home just to do research to understand what was said. So I think the medical gaslighting is hurrying patients through the system, wanting to get on to the next one, not asking deeper questions. You've got abdominal pain. How long has that been going on? Jumping to conclusions, I think, is the medical gaslighting part of it. But again, it's hurrying, not paying attention, not listening, and not asking deeper questions.

SPEAKER_01 28:45

My litmus test for whether or not I'm being gaslit or just have a difference of opinion is if the doctor tries to make me feel like I am wrong, I am not in my correct mental state, or that they know better about my body because they've been to medical school and I haven't. That gives me a little gut feeling that says maybe I'm being gaslit by this doctor. I agree. That's not a good feeling, is it? It really is not. So you've said patients should be treated as a partner, not a passive recipient. What does a patient have to do differently to trigger that partnership dynamic with a doctor?

Preparing For Appointments That Matter

SPEAKER_00 29:29

So yes, not being a passive recipient of healthcare, but being an active participant means that you are going to do some research. You are going to ask Google or ask WebMD. Just make sure you get reputable information. And like I said, AI even can be very helpful. You just have to have a discerning eye. So preparing for the appointment and then, or if you're in the hospital, you know, they said your mom just had a stroke, then you can do some research and then you can ask informed questions. And that creates a dialogue back and forth. Or if it's your own health and you're in the doctor's office and maybe you've just been told you're pre-diabetic. Okay, so what does that mean? What can I do? Do I need to meet with a dietitian? Do I need to be more active? Help me understand what that looks like that I can start treating this and asking questions like, is it reversible? And yes, it is. It is lifestyle related because now, even we have children who are pre-diabetic because of their lifestyle choices. And again, it's parents may not know themselves, and so they don't pass on good information to their children or, you know, eat well in their homes. But I think it's really about being informed and how do you get informed? You talk to other people, there's support groups for online for people that have chronic illnesses you can join. There's lots of information, but you have to make the effort to find out about it, and then you can ask the questions. Okay, so if my hemoglobin A1C is seven, what's the goal? 5.5 or less. Okay, when do we recheck it? 90 days. What can I do in the meantime? How will I be feeling? You know, it's it's really getting informed and educated to be a full partner with the healthcare team.

SPEAKER_01 31:30

And for people who are not used to looking up medical information and don't really know what's a trusted source, one of the places I like to point people to is to the transcript of my podcast episodes because you can hear other MDs talk about what you can say, what should be checked, what you can do, what your treatment options are. But I also trust the National Institutes of Health's website, PubMed, the CDC, because these are also places that your doctors will go when they don't know the answer as well. That's true. Yes. So for families and caregivers, what should the person in the room, the the caregiver person in the room, say to ensure proper care when a loved one is has dementia, when they're sedated, when they can't advocate for themselves?

Records Notes And Bringing Support

SPEAKER_00 32:22

Yeah, and you bring up a good point because sedation or pain medication or any anti-anxiety medications can alter the patient's uh level of consciousness or their awareness. And so they should not ever be signing any kind of permission slips, so to speak, the informed consent, whether it's a procedure or even surgery, if they've got altered mental status. If there's a history of dementia, hopefully someone has power of attorney to make those decisions. And dementia is a scale. You know, we've got ones that are high functioning early in that diagnosis and then more debilitated. But I think, you know, your family member or loved one can be out of commission, so to speak, in the hospital if they've got severe pain. They've got, you know, an infection that's brewing that maybe somebody isn't aware of, because that's a that affects mental status as well. And so the caregiver just needs to understand that middle person, as you said, understand their loved one or their family members' base health line, their baseline health, and then also what the plan is, what should we be watching for? So kind of the same questions. What do we expect from this treatment? You know, if my mom is altered mental status, do we know what that's from? And asking those questions. Is it medication? Power her vital signs, strokes can happen too. Do we need to do some further diagnostic tests to really understand what's going on that's causing this change in her mental status? Frequently, older patients, their first sign of a urinary tract infection is not the same as younger people where we have frequency and burning, but it is mental confusion or changes. And then they're at risk for falling. So there's so many reasons that we need to get to the bottom of if this is new, what's going on? And it may take several diagnostic tests to figure it out.

SPEAKER_01 34:22

And so we've all seen those videos where a parent or a child or sibling is recording themselves live or streaming live from a bedside where they're attempting to advocate for a patient. For example, when it comes to taking someone off life support and then the hospital saying, We're going to take your family member off life support and we want to talk to you about organ donation. Famously last year, there was a mother who recorded a situation like this with a young teenager, maybe 14 or 15, just hours after he'd been hit by a bus, they wanted to take him off life support and donate his organs. And they did everything. They called insecurity. They tried to force the parents out of the hospital. What are our rights in situations like this?

SPEAKER_00 35:15

Well, especially a child, the parent has every right. You know, that just is so egregious to me and so shocking to me, because we know with brain injuries, many times there is, or most of the time, there is swelling involved. And if that swelling goes down, which is why sometimes they put them in a sedated coma to allow the body to repair, especially kids are so resilient or younger people are so resilient. You know, and uh last year too, there was a couple stories of they thought the patient was actually brain dead and not going to ever wake up and they started moving and opening their eyes. You know, that doesn't happen all that frequently, but enough to give us pause for thought to say, help me understand what tests did you do to prove that my son or daughter or mother or father has brain damage beyond healing. And then would it hurt to leave it for a few days and redo those tests? Tell me what the benefit, the pros and cons of doing that, because I'm just not comfortable removing life support at this point.

SPEAKER_01 36:24

And then what about security? I know this happened with me, where I was given or attempted four times to be given something that is in my electronic record that I'm allergic to. And I told the doctor, family member told the doctor, and two doctors and two nurses were very insistent on giving me this medication. And then they put three armed guards outside the door, and we were polite. We both assumed, well, maybe the hospital's busy and they just made a mistake. We never thought anything, you know, nefarious. We were just kind of like, don't give her that. It could have a very bad outcome. And we never were agitated, but we didn't know if we could leave or not. And that was a very scary situation. What can we do in those situations?

SPEAKER_00 37:16

They can't force you, because that's battery, to take a medication that you tell them you were allergic to, or that frankly, you just don't even want. Yes, you can get up and leave against medical advice. The only way that they could hold you is proving that you were not psychologically safe and that you may harm yourself or harm others. My suggestion, if that ever happens to anybody that's in this audience listening, is to ask to speak with the hospital administrator. And there's a hospital administrator on call 24-7. And then you can also say, well, fine, I'm either calling the local police, calling 911, or I'm going to call the local news. I'm sure they'd love to get a hold of this story.

Caregiver Advocacy And Informed Consent

SPEAKER_01 38:01

And that's exactly what I had to do is I said, I have the local police chief and I can get them on their cell phone right now to get an escort out of this hospital, or you can just let me leave and they just let us leave. But that was very, very scary. I can imagine.

unknown 38:20

Yeah.

SPEAKER_01 38:21

So before we visit before we visit a doctor for a standard visit or have surgery, how can patients check a doctor's reputation to look for safety concerns and find out whether or not they have financial ties to pharmaceutical or device makers that might be involved in your treatment?

SPEAKER_00 38:40

Yeah, that's a really good question. Unfortunately, it's not that easy to find, but I actually did a whole workbook for patients on that topic in my courses for patients and families, because unfortunately, the American Medical Association really protects physicians and doctors. And even if they make an egregious mistake, which they're human, you know, they're going to make a mistake. We all are making mistakes as a nurse. Luckily, nobody was injured. But there's such a lack of transparency in the healthcare system. And that's what's scary to me. For example, if a doctor makes a mistake in the hospital and harm happens or death happens to the patient, many hospitals, I think I read something last year that was 80% of the hospitals have this patient's family sign an NDA, meaning they can't talk about it. So if we don't have transparency and we can't talk about it, even to the point where we're not trying to point fingers and point blame, but most medical harm that is preventable is done because of a systems error, meaning that things line up. Maybe we didn't have a policy for sedation when the patient was in the CAT scan and we should have. So if we don't share, then you'll learn that hospital, you'll learn that lesson in that one hospital from that one bad patient outcome. But don't you think other hospitals should learn that too and go, oh wow, do we have a policy for sedation in the CAT scan radiology department? Well, maybe we should get one. But we're not going to learn that with everything being swept under the rug or under the carpet. I call it the Wizard of Oz curtain of health care. It's true. We think about it. We don't know what's going on behind that curtain because nobody will tell us. And so I think that's why it's so important to get educated and informed and empowered as patients and families. And do it in a polite way, of course. But no, I think their culture is they're used to us being subservient and say, yes, sir, yes, ma'am. And even if we feel like something's not right. So what are the biggest mistakes that we patients make when we're self-advocating? Probably the emotion behind it, I would think. And I get it. I get the same way when I'm frustrated with something or scared or don't know. It's easy to get the the high emotion. And that's then easy for the healthcare team to dismiss you and not have a conversation with you. I try to teach at least my nursing students and then patients and families to we don't know what the doctor just went through. Maybe he's an hour late making rounds because there was an emergency in the ER or in surgery or wherever that delayed him and there was a really bad outcome. And, you know, we fell to the bottom of the triage list of being seen and being, you know, have that appointment or whatever. But I think keeping as level emotionally as we can and just stick to the facts, you can say, you know, I'm really frustrated because this medication isn't working and I thought it was going to. So what else can we try? Dr.

SPEAKER_01 41:45

Seymours, this has been so empowering and so insightful. What more do you want to leave listeners with?

SPEAKER_00 41:51

You know, we sound like the healthcare environment is scary, it's unsafe, and it is in many cases, but it also there are so many phenomenal nurses, so many phenomenal doctors, and so many amazing healthcare institutions. So, what I would like to leave for your audience is be prepared. Do your homework, do your research, understand your own body, and again, be persistent when you think something is wrong with you or one of your family members. Don't let them minimize you and dismiss you when you know. That, you know, it's really interesting. That gut intuition is real. And so when you're feeling that, you have to just follow it. Even if you say, I can't explain to you how I know, but something is wrong with my dad.

SPEAKER_01 42:45

Yeah. That's really important. So I get so much value out of your daily posts, I think they're daily, about all of the things that we've just talked about. And sometimes it just helps me to feel more confident, especially after I've advocated for myself and a doctor really got personal and belligerent with me. And sometimes seeing your post just brings me back to I did the right thing for myself, or I did the right thing for somebody I care about. So where can people find and connect with you so that they can get this great value from you also?

Life Support Pressure And Your Rights

SPEAKER_00 43:24

Thank you. Yeah, my social medias are DR Julie Seymours on TikTok, Facebook, Instagram. And if I could just add one thing, because you made me think of it. A lot of what I talk about is this lawsuit, this is what happened to the patient. And unfortunately, you know, the patient had harm or whatever. And it may sound really ominous and like, oh my God, so scary. But I think when we can relate to stories that really happened, and that's why in my book, too, I have 30 different stories. Unfortunately, they're all true because most of them don't have a good outcome. But if you hear about John, who has Sleep apnea, who went in for shoulder surgery and was given narcotics, but wasn't monitored. And he died because of the combination of opioids and sleep apnea is a deadly combination. Then now you know something you didn't know, and it only took you a couple minutes to learn it, and you can file that away to say, okay, my husband has sleep apnea. If he's ever in the hospital or ever is prescribed opioids, I will know that really can impact his respirations and diminish them, decrease them, where it could cost him his life. So again, I think stories are so important for people to learn what happened to someone else and avoid that, or just now be empowered to say, I just learned something little today. Like washing hands, too, that's another really important one, especially in the doctor's office or especially in the hospital. One in 31 hospitalized patients end up with a hospital-acquired infection. So knowing that, and one of the stories in my book is quite devastating, but if you know that what the consequences could be, then you're empowered to say, nurse Julie or Dr. Miller, can you please wash your hands before you touch my wife? You know, a lot of people are scared to say something like that. But if you think what could happen, because they should, that is policy, they should be doing it. And you just say it nicely, what could happen is, yeah, if I don't speak up, maybe we'll have a poor outcome. So that's empowering, right?

SPEAKER_01 45:35

It really is. You know, I have said that to many a doctor, and I usually like to say it, I'm sure you probably washed your hands before you came in the room, but I didn't see you do it. Would you mind doing it now? And most of the time they get really angry. That sort of sets the tone for the appointment that, oh gosh, and then I'm on my best behavior for a while because I don't, I don't want to have a bad appointment, but I I also can hear the doctor in the room next to me. And they walked out, walked directly into my room, they were touching another patient. I can hear what they were talking about, and I really want you to wash your hands before you touch me.

SPEAKER_00 46:17

That too. And so I think the more that we can educate our audiences on what they should expect and what they deserve, then we'll start changing. Doctors will hear it from every patient and not be upset about it, you know.

SPEAKER_01 46:33

That's my goal. Wow, I I never really thought of normalizing this sort of self-advocacy as a thing, but thanks for clearing that up. Thank you so much for joining us again, Dr. Seymour's your one of our favorite guests on the show, and we hope you'll come back soon. Thank you for having me.

SPEAKER_00 46:51

I enjoyed it. The information in this podcast is not medical advice and should not be treated as such. Always consult your physician or healthcare professional before pursuing any health related procedure or activity.