Diagnostic Safety - A Public Health Crisis

Speaker A: Welcome to the podcast the patient's voice. Does it matter? This is a place where your voice will always matter to me. Healthcare is complicated, so I wanted to create a safe space where we will discuss tips, hot topics, provide you with resources, have guest speakers who are experts in the healthcare industry, a real patient sharing their patient experience and hopes to help you navigate any healthcare situation. I want to focus on you, the patient, and discuss issues that matter to you in an open and transparent way. I'm your host, Krista Hughes, in which I'm a board certified patient advocate. I, I have a passion for patience. So let's be the change together. So welcome back, friends. In, uh, today's episode, we're going to talk about diagnostic safety. I've done an episode like this prior. Um, it was joined in with the patient safety, but I'm doing it again because it is so important, so much is going on. Um, we're, we're begging for Congress and the Surgeon General to literally make this a public health crisis. So this time I'm talking about it, but more at length, but that's how important this topic is. So as always, I'm going to start the show with the what would you do segment. Then we're going to transition to let's talk about it where I'll give like resources or research behind it and finally wrap up the show where I'll give you tips on, on how to make your voice matter in this particular situation. So let's get started. Imagine being in your late 60s, you've just sold your house, you're about to build, uh, start construction on your forever home at the lake. You have a stroke, you are put on medication, you're seeing your cardiologist, neurologist, and you start physical and speech therapy. Things are going pretty well. And then you start getting worse. So you hire an advocate to help you with finding a new doctor as you feel you're being dismissed by your current neurologist and not understanding why you're not improving and getting rapidly worse. And at this point we're wondering if he has had another stroke or a tia. So let's talk about it. Do you know that most people do not know what diagnostic safety means? And that includes people in the healthcare industry. And that's okay. That is why I want to educate you to know what it is and why it is important for you to know what it means for you. So diagnostic safety is the number one issue or medical error that I deal with as a patient advocate with my clients. It's something I deal with every single day with the patients that I serve, they all have some sort of diagnostic error that has happened to them. That is pathetic. And shame on the healthcare system in 25 years. They've been talking about improving patient safety for 25 years. And 25 years patient safety, to include diagnostic safety, has not improved and has gotten 10 times worse. It's the worst I have ever seen it, and it continues to get worse. We, as I said earlier, we're calling on diagnostic safety to be deemed, excuse me, as a public health crisis by Congress and the Surgeon General. If it was talked about more, I mean, if you heard about it, um, you would be able to recognize that what it means and it would help you and patients and your loved ones take a more proactive role with your health and prevent this harm from occurring. So let's go over a few statistics per the Patient for Patient Safety US website. Um, I've linked all of this in the show Notes to include their website. Definitely go check out their website. Um, they're activists and we're trying to make change at the federal level, um, with patient safety issues. So experts from Johns Hopkins estimate that up to 800,000 people die or have been disabled annually from a missed or delayed diagnosis. And I'm going to talk about that in a minute. More than half our population in the US Will suffer from at least one wrong or a, uh, delayed diagnosis during your lifetime. The Office of Inspectoral General, which is the OIG, revealed that between 25 to 30% of Medicare recipients are harmed by unsafe care in hospitals, skilled nursing facilities. And if you didn't see or go back and listen to skilled Nursing facility, um, podcast I did last week, go back because you, yeah, it's happening, it's out of control, um, but it happens in rehab centers and long term care. Now this is the federal government in reporting this. It's a nightmare. They also, adverse outcomes from unsafe care disproportionately impact people who, um, are experiencing social marginalization, such as older adults, people of color, those with disabilities, and the LGBTQ communities. And 84% of all doctors surveyed by the American association of critical care nurses, 84% have observed colleagues taking dangerous shortcuts when caring for patients. Now, if y' all don't think this is happening to you, bless your heart because it is. So did you know that September 17th every year is World Patient Safety Day? Um, it's a day where we celebrate or we're trying to bring awareness to the disaster of patient safety. Like I said, For 25 years it's not gotten better, it's gotten worse. Well, this year's theme is on diagnostic safety. And what they're doing is we're bringing awareness to this tremendous issue issue. And during this uh, event, it's a summit which is held in D.C. there's a march to the capital every year to honor loved ones who have died or been disabled by preventable, um, errors. If you want to get involved, go to that PFPs website that's in the show notes that I talked about earlier. Um, if you want to get got ball, please do come and join us. I'm going to be there. I would love to meet you in person. But we're trying to, like I said, we're trying to let the federal government. This is a problem. So now let's get back to the issue at hand. Diagnostic safety or diagnostic errors. So what are diagnostic errors? Where there's kind of like I keep saying a delayed wrong or miss. And it's kind of, it is what it is, you know, and these categories can overlap. So a delayed diagnosis is something that, um, a diagnosis they should have given you earlier and it was delayed. This is a very, very common in cancer patients and that, that can lead to dire consequences. Then there's the wrong diagnosis. And um, the original diagnosis they gave you is wrong. Um, I had a client that was told by their cardiologist that they had a leaking valve and they had to have immediate surgery. And I advised them to get a second and third opinion. And um, the second and third opinion both agreed the first was wrong. The patient never had a leaking heart valve and never needed heart surgery. So this patient was given a wrong diagnosis diagnosis which is a diagnostic error which could have left, uh, resulted in patient harm death, a medical error. You've got to realize all these call so many things. So you've got to be vigilant, you've got to do your homework, you've got to push back. Don't just be the trusting. Yes, ma'. Am. Yes sir. Patient. Um, push back on the health care system. And then third there's the misdiagnosis. And it's where a patient, uh, has complained about something and it never gets explained to them. And this happens all the time. And you are gaslighted. You're told no, you're not experience. That's not true. And I'm going to talk about gaslighting in another episode because that is the one thing that happens all the time. And you have to literally fight for them not to um, ignore and dismiss you for you to have a misdiagnosis. That's ridiculous. Um, they argue with you when they gaslight the patients, when actually the patients are right. We know our bodies the best. Um, I had a client that went in to see his cardiologist and he said, something's wrong with my heart. And no, it's not. It's your lungs. No, it's not. It's my heart. I mean, it was. You had to argue, um, end up getting a second opinion. And yes, it was never his lungs. Uh, I digress. But it infuriates me that this is where healthcare, it's the pride and the no accountability and you're not going to go up against me, um, attitude that needs to go. It's not, it's not patient centered at all like they claim in the health care system. It's all Dr. Centered. Um, and a lot of people think that diagnostic errors only happen to you when you start getting older. Please don't be fooled. I know too many young people that have been disabled for thinking that it couldn't happen to them and for trusting the health care system. Uh, I've said it. I say it all the time. No one's immune. No one. At the end of the day, this has got to stop. There has to be transparency and accountability. And if you missed my, uh, accountability episode, please go back and listen to it. Because we all got to start doing our part if we want things to change. Complaining about it and going to make change, true change is doing something about these issues going on with our health care. We have to just start standing up for ourselves and report. You can report, report any kind of problems you have. Please start reporting it. So now that I'm done with ranting, um, let's make your voice matter and go back to the story at the beginning. Um, the client continued to get worse while we were waiting on a second opinion, because I did get him, um, a new neurologist. Um, but, you know, you don't just get it that day. So while we were waiting, he just kept getting worse. Well, just ironically, he fell and he had to be taken to the ER because he was getting that much worse. He was unstable, so he fell and was taking the er. And when he was in er, it's when he finally got a diagnosis. Total, totally different. He was diagnosed with a brain tumor called a glioblastoma. It is a nasty and aggressive brain tumor. He never had a stroke. Never. I'm not sure how he was diagnosed. Um, you don't want to hear my two cents. I just don't know who misdiagnosis on a scan a difference between a brain tumor and a stroke. But, um, I guess that's why I'm not a PhD. But he was misdiagnosed with having a stroke twice when it was a brain tumor really. So because of these diagnostic errors, now he had all three. It was missed m delayed and wrong. It shortened his life way much faster than anticipated and he passed away extremely quickly. And he never got to build is forever home. I want to thank you for listening. I hope this is helpful to you and make sure you check out the show notes for any, um, of the resources. And of course, this brings us to the end of this episode and I just want these topics to be beneficial for you. Thank you for listening to the patient's voice. Does it matter? You know, if you enjoyed the show, make sure you like comment, subscribe, tell me episodes, other information you want to know. Please get involved. Letting me know. Share everything. Just get involved with all my socials on YouTube and um, you know, if you need any private help, please reach out to me, um, as a patient advocate and until then, this is Krista Hughes and don't forget, I have a passion for patience. Let's be the change together.