 Okay, well, it's the top of the hour here in Brighton, early here in California. So we're going to go ahead and get started. Hello everyone, and thank you for joining today's webinar. My name is Sarah Miller, and I'm our Director of Partnerships here at the Patient Safety Movement Foundation. And I'm really happy to be here today as moderator for today's panel discussion. Today we're gonna be talking about a very important topic and that's care coordination. I hope you all take away something from today and learn how to be a key partner in caring for yourself and for your loved ones. I'm gonna go really quickly through the objectives. So the first objective that we have here is defining what care coordination means, why it's important and what patients and families can expect from their providers. The second is identify the gaps that currently exist with care coordination and healthcare. And then the final objective is recognizing your role as a core partner in coordinating care for yourself and for your loved one. So for those of you attending this live webinar, we are happy to announce that this webinar has been approved for one CE credit, satisfying the requirements for BCPA. You should receive a certificate from the Patient Safety Movement Foundation and just note that the CE may take about five to seven days to process. If you have any questions, feel free to email us at the email listed above. And then last thing that I'll know, as many of you might know, we do provide our education content completely free of charge. As a nonprofit, we do ask that you continue supporting our educational content and programs by donating what you can. I have linked the website here, but if you are interested in supporting our programs and continue to want these educational webinars for free, please visit our website, patientsafetymovement.org slash donate. Before I pass it over to our panelists, a few housekeeping items. For those of you that are attending this live webinar, you have been muted upon entry. You will not be able to unmute yourself during this webinar. So I do ask that if you have any questions, feel free to pop them in the Q&A session at the very, very bottom. We will have about 10 to 15 minutes at the end of this presentation to allow for questions and have our panelists answer anything that you guys might want to cover. So with that said, I'm really excited to welcome all of our panelists today. You'll see their little photos in the corner and you will hopefully hear from them in a little bit. So I will go ahead and start with Jodi Denton. Would you like to introduce yourself? Sure, hi, thank you. My name is Jodi Denton. I live in Denver, Colorado. I'm the Patient Advocate Panelist today. My mother, her name was Pat Denton. She passed away almost three years ago, maybe three years ago this September. She suffered complications from a staff infection that she incurred during a routine surgery for a pacemaker implant. But more important than her death was her life. She was 73 years old when she passed away. She was in the middle of a very active and full retirement, approaching 50 years of marriage with my father. She was the proud grandmother of two amazing grandchildren. She was passionate about golf and travel and politics and just she lived life to its fullest. And she was my best friend. And I'm honored to be here to tell her story and continue her fight. Thank you, Jodi. We're so happy to have you here with us today. The next person that I'll highlight is Regina. Regina, do you mind introducing yourself? Hi, everyone. My name is Regina Kamuga from Uganda. I'm a Patient Safety Champion since 2011. And my passion for patient safety dates way back since when I had incidents, near-miss incidents at personal level, community level and at family level. My mother almost died due to an overdose of her hypertension drugs while I almost lost my life when I was having my second baby. And ever since then, I committed myself to promote patient safety. I'm a Patient Safety Champion of the WHO Patient Safety Program. I'm also the Executive Director of Community Health and Information Network in Uganda and I've done and laid a lot of patient safety initiatives in Uganda and across Africa and internationally. I'm very delighted to be part of this webinar today. Thank you, Regina. Our next panelist is Christina Weaver. Christina, would you like to introduce yourself? Hi, I'm Christina Weaver. I'm from the Parish Medical Center in Tidesville, Florida. So over near the Space Coast, 30 minutes east of Orlando. My role here is to drive care transition. So we'll help looking at a portion of care, care transitions and simply just trying to improve the health of our community. And a lot of it has to do with truly that coordination of care and access to care. Great, thank you, Christina. I'm excited to have you here with us today. Last but not least, we have our very own Donna Proster. Donna. Yes, hi. Hi, everybody. I'm Donna Proster. I'm a Chief Clinical Officer here at the Patient Safety Movement Foundation. I am a nurse by background. I've been a nurse for 31 years. And I actually came into the quality and safety space myself because of a personal situation. When in 1997, my late husband was diagnosed with cancer and for three and a half years, I understood what it's like to be on the other side of the bed and dealing with the fragmented care system that we have. That was in 1997 and I'm sad to see that we are still struggling so much with care coordination issues for a lot of reasons. A lot has improved in the last many years, but I have been very involved as a hospital administrator, as a consultant, and now as the Chief Clinical Officer here at the Patient Safety Movement Foundation, continuing to try to make things better for patients and families. Thank you, Donna. And we're so excited to have all of you with us today. We're gonna have more of a discussion style webinar today, so I will stop sharing my screen. Okay, so we have a lot of ground to cover today, so I'm gonna go ahead and just jump right into it. My first question is actually for Donna. So Donna, what does care coordination mean and what are the typical assumptions that patients and families have about who's responsible for it? So, you know, it's interesting. There are so many different definitions for care coordination and really what it means is making sure that the needs of the patient and the preferences of the patient as well as their family are effectively communicated to everyone involved from the physician office to the hospital to the long-term care facility and all the way across what we call the continuum of care. And then we use that information to make sure that the right care happens at the right time. So the problem is that this doesn't always happen very well. We have such a complex healthcare system. There are so many gaps in the care process, and so it's easy for things to fall through the cracks. So this happens especially when someone's dealing with a new illness or a chronic problem because there are just so many people involved. Now, in some cases, you know, you think about oncology or cardiology, there may be a case manager or a navigator that might be involved that can often help with this, but more often than not it really doesn't happen by one person all the way across the continuum. So the reality is that patients and families need to be their own care coordinators and be as engaged and involved as they can as active members of their care team. And so, you know, and unfortunately, there are so many people that really don't understand this. And I think mostly about our, you know, our older generations, the baby boomers, the silent generation, the greatest generation, there's an assumption among those individuals that, you know, our doctors and our nurses are just gonna take care of everything. And they sometimes they're afraid to ask questions because they don't wanna seem stupid. And so that's when things fall through the cracks and care becomes unsafe. So, you know, so again, I think, you know, when you think about the term care coordination, you know, it really is just that making sure that things don't fall through the cracks and that we help people stay safe. Great, thanks Donna. And Jodi, I'd love to get your perspective from a patient perspective and your personal experience with your mother. What were some assumptions that you had about who was responsible for care coordination? Yeah, I mean, exactly as Donna said, you know, I mean, we, my family has, you know, very limited, you know, fortunately we had very limited experience in an acute, you know, hospital setting like that when my mom was hospitalized. She was hospitalized for eight weeks. She had three stents in the ICU, two intubations. She had a, you know, medical team of five different medical disciplines treating her. And as her family, you know, a lot of it was we, we frankly didn't know what to ask, right? Without that medical expertise of our own, you know, it was a lot of, we don't know what we don't know. And there definitely was the assumption, well, the doctors are doing this treatment, you know, they must, you know, we trust them, they must know what they're doing. They're the professionals. And we also assumed that they were all coordinating amongst themselves behind the scenes, right? That each discipline, you know, the cardiology team was talking to the nephrology team talking to infectious disease, to pulmonology, to the rehab team, right? I mean, we just assumed they were all coordinating behind the scenes, but we never even had an experience until six weeks into her hospital stay, two weeks before her death, where finally we all got in the room together to discuss her condition. So, you know, our assumption was that they were coordinating behind the scenes, that they were talking regularly, you know, that, you know, these are medical professionals. This is a life and death situation. Surely they're all discussing the best treatment options together and how, you know, one treatment might affect something else, you know, how is her dialysis affecting her heart condition, right? We just assumed those were happening behind the scenes, but we really never got a full picture of her entire care coordination and the various treatments that she was receiving and how they interacted with each other. And honestly, the term care coordination was not something that was in our mind either, right? I mean, we were so focused on how she was doing in that moment. I mean, luckily we were able to be with her every single day and, you know, her condition was changing daily, if not multiple times throughout the day. So, you know, we mostly, frankly, relied on the nurses to help coordinate everything because we were lucky if we could even catch the doctors on their rounds. Right? Well, Christina, I'd love to hear from the provider side. You know, what do patients and families need to know about the typical assumptions that providers have about care coordination? Right, so when we look at the provider side, especially from the primary care side, during that primary care visit, we really hope that that, assume the patient is coming to that primary care for that truly kind of coordination of care that they're coming to that primary care without seeing multiple doctors that we're not getting the reports back from, that, you know, it becomes very fragmented when they're only seeing the cardiologist and then seeing the nephrologist, but there's not that primary care physician or internal medicine physician really pulling everything together. In the primary care side as well, we really hope and assume that the patients are going to be telling us the honest truth truly telling us how they're feeling, right? We like to say in our organization that the word, using the word patient is kind of a foul word here. We like to use the word person. And we really want that patient or that person when they're coming in for that primary care to take care of them to truly tell us what all is going on. Don't assume that we don't have time or when we don't sometimes, but it's easier if they're truly honest and upfront. And I think from the care coordination side from an acute care perspective, from the hospital side, from the ER, there's a lot that's going on and there's case management involved. There's potentially a navigator. There's again, multiple specialty providers. And when we don't have truly those good goals of care conversation in the family involved, it makes it very difficult to assess the barriers. It makes it very difficult to truly understand again that person-centered care. So we assume a lot of times the individual that we're caring for again is being very open and honest, but sometimes it's just simply they don't know what to say or when to say it. But so sometimes making a list is a little bit easy makes it easier to truly address the concerns and again, having that family engagement. So. Great. And Christina, we talk a lot about health literacy and healthcare. What do patients and families need to know about the role health literacy plays in provider assumptions? So health literacy, the definition of health literacy is truly being able to understand and obtain the information, being able to grasp that health information. And there's various degrees of kind of interpretations of health literacy. You can be, you can have a master's degree, doctorate degree in engineering, that's literacy, right? You know how to read and write, you understand and are a very smart person, but then that same individual can come in with a brand new cancer diagnosis and be very overwhelmed, right? Not understand this healthcare system is a very complex system, even for medical providers and the acute care world, we rely on case management a lot to help kind of navigate or help coordinate care. But when it comes outside of the hospital and they don't have that navigator or that case manager, again, even for the healthcare provider, the physician itself, health literacy to play a role on them, understanding how to navigate access to care. When we're talking about health literacy with patients and understanding their diagnosis, it's really important for the patient to give us feedback on how are they feeling? Are they overwhelmed? We do like to utilize a method called the teach back method, where if we are giving information to a patient and trying to engage them in their care and level or try to understand their basic understanding, we really like to have that patient kind of teach us back. Tell us what you've learned, tell us your understanding. And so I think from a patient perspective when you're talking to your medical professionals, if the physician or the person that's educating you does not give you that opportunity or ask you, hey, tell me what I just told you, go ahead and pause for a moment and say, just take your own initiative as that person that you're being cared for, say, I really wanna just take a pause and let me tell you what you just told me. Let me make sure we're on the same page. So again, health literacy, it's not just somebody who didn't graduate high school or doesn't know how to read or write or have those language barriers. It really could be even simply you're so overwhelmed and there's so much to grasp. So just taking a pause and feeding that information back to the person that's telling you that information. And again, be an honest too with, if you're not understanding it, it's not a dumb point to bring up saying, hey, I don't understand it. They're not gonna think that you're not smart. They're not gonna think that, oh, you're wasting my time. I have to try to explain this again. Most healthcare professionals truly wanna understand and wanna understand your needs. Absolutely, I couldn't agree more. Regina, I'd love to hear your perspective from the international side of things. What would you say the gaps are internationally? Thank you very much. The gaps mainly on the patient side, we're looking at a patient who is vulnerable, vulnerable in the sense that they are burdened with a double burden of communicable and non-communicable diseases. And especially in resource limited settings, these patients are also poor, that access to health is very, very difficult in terms of being able to pay for the healthcare. And again, the literacy levels in terms of being able to understand the healthcare issues as well as the low health literacy where they cannot understand the health information, being able to act upon it and as well as navigating the complex healthcare system. So then on the other side of the healthcare system, there's very poor access to healthcare. The paternalism of the doctor knows it best where the patient is looked at as a passive receiver of care and just with a body and not a mind. So that really, really impacts the way patients engage with the healthcare professionals. Then of course, we have quite the patient relationship, the health, patient-doctor relationship is also very, it's also a huge gap and a barrier. So you find that because of that, we have poor communication, which actually leads to many issues leading to patient safety incidents. Great, thanks for doing that. So I do wanna shift gears a little bit and talk about transitions of care. Jodi, I wanna start with you, what's meant by transitions of care and why are these transitions so important using your personal story as an example? Sure, well, Christina mentioned earlier the concept of a case manager. And that was something that we did not have for my mother. And again, it was something that we didn't, not having been in this type of experience before, it was not something we even really thought of to ask for. Amongst ourselves, we would say, it would be nice if there was just one person who knew everything that was going on. We were relying on the nurses, frankly, for that. But that case manager, project manager, position, somebody who could have kept us surprised daily of everything that was going on who was in touch with all the different medical teams and informing us. I mean, that would have been huge and that was definitely something that was missing. And a specific incident in the transition of care for my mother that I think potentially contributed to her death was when she died, actually she died of cardiac arrest it was the evening of September 8th, 2018. Just 24 hours prior to her death, she had been transferred from the step down ICU level to the general admitting level of the hospital. So that was a transition of care, right? We had never even been informed that this was about to take place. In fact, I remember we went into her room on the step down ICU level and she wasn't there and we were shocked. And they said, oh yeah, she's been transferred upstairs. And we thought, well, that's interesting. Like we didn't even realize this was a potential to happen. And we were kind of going, well, this is a good thing, right? Because that's less acute care. So that must mean she's getting better, but she wasn't getting better. And we knew that and we could see that. But again, we trusted, well, they transferred her, they must know what they're doing. This must be the right thing. In retrospect now, I have no idea if the cardiology team was informed of this transfer. Did they approve it? Did all the different medical teams approve it? We were really concerned, but again, we wanted, we believed that the team knew what was doing, what was best. And we also wanted to remain hopeful. So, we took that as a positive sign. And again, it wasn't even 24 hours later then. She died of cardiac arrest on that level. And perhaps if she had been in the level where there was more acute care, that wouldn't have happened. And Christina, I wanna ask you, why are transitions of care so risky? And what can patients and families do to mitigate these potential risks? So with care transitions, a lot of times you'll hear kind of keywords utilized throughout the care continuum. And when we talk about this care continuum, there's a lot of technology that's utilized nowadays, but sometimes it's failed to be used. So when we look at, as an example, a patient that has a primary care that now unfortunately is being admitted into acute care, it's really important to know all the medications that are brought over, right? What medications are they usually on? And it can become very complex, especially if the patient has multiple care providers and the patient maybe is not confident to be able to give you their list of meds. Maybe it'll have to be Emily right at the bedside to give you their list of meds. And so therefore then they get admitted and maybe they have diabetes or heart failure. They have a lot of conditions that we don't know what medications they're on. That makes it very difficult. And then as they move throughout the care continuum, so being from let's say the acute care hospitalized state onto a skilled nursing facility, maybe then after that to home health and eventually home, it just makes it very difficult. And I think the biggest risk that we see that result in what we call readmissions where the patient has to end up coming back to the emergency state is the failure to really appropriately watch the medication list. There's so many medication changes that occur in between care transitions. But then just set aside the care transition side, or I'm sorry, the medication side. When we look at, you know, there's duplicate testing. There's a lot of, maybe the patient has, but again, the heart failure and we're watching for weight gain. If that patient didn't have their weight transcribed to the next skilled nursing facility and they start gaining weight and their heart failure is getting worse, we're not gonna fully see that. We're not gonna understand that if those transitioning care were not communicated across all entities of this care continuum. Many organizations are moving towards what we call integrated care where we are putting policies in place and processes in place to have a checks and balances of really utilizing that technology to help smooth over the care care transitions to where electronic medical records will communicate with each other. Where if we do have a forbid habit, say your grandmother in the ER right now and there's nobody to speak for her if we have a primary care provider being having access to those records and what's going on. Also here within the US, Medicare just made a new rule. I think it was last year where we had to notify the primary care of admission and discharge. There was a huge gain changer because again, that primary care having that central primary care of that patient, making them aware, it's their opportunity now to share with the next care transition of truly what's going on and what the barriers are. Great. So I wanted to bring it back to something that Christine said, person versus patient families and ensure that healthcare workers see them as people or persons in coordinating around care. I'm sorry, that just broke up a little bit here. Oh, I'm sorry. The next question was for Regina. Regina, I'll ask the question just one more time. How can patients and families and ensure that healthcare workers see them as people and coordinating their care? Oh, sorry. I didn't hear. First of all, the patients are the only constant in the healthcare process. As they move from one process to another, they and their caregivers are the only constant. And also they're very, very critical components of the healthcare delivery system. And as such, they should be at the center of their healthcare in terms of making the right decisions, engaging at any level with the healthcare professionals, discussing the different treatment options and being able to communicate. However, this may not be always the case, mainly because many patients are not able to do so. Like I talked about, many of them are vulnerable and are not able to engage at an equal level and all those issues of paternalism. So what does the patient need to do? The patients need to ensure that they are empowered, that they have the information and knowledge about their diseases to enable them engage at an equal level. Obviously, talking about being provided with a conducive environment on the other side, but they need the information that they require. They need to be empowered through health literacy that will help them to be treated as people. Because many times patients, especially where I come from, they are looked at as just passive receivers of care, yet they actually have a mind, not only a body. And it's important that healthcare workers see them holistically as people who can contribute, who can engage, who can make informed decisions about their healthcare. And besides, they know themselves better, they know their conditions better. So it's important not only to look at them as patients per se, but as partners who can give their views, because they know what impacts them. And especially when things go wrong, they're the ones who suffer harm. So it's important that we all work together and ensure they are empowered, engaged, and given the right information. Because like I said, most of the patients are vulnerable, especially where I come from. So working with different stakeholders to empower them to bring them on table, to give them opportunities that allow them to be empowered, giving them the right tools, providing them with an environment that enhances their confidence is very, very critical in this whole process of working and engaging patients and their families. Great, thanks Regina. And Donna, I wanna ask you as a former family caregiver, how can family caregivers ensure that they're viewed as key partners in coordinating care for their own loved ones? You know, to follow up on what Regina was saying is be involved. Every patient, and I think it was Christina earlier who was talking about from a health literacy standpoint, when you're sick, you don't really necessarily have the capacity to make really sound decisions and to understand everything that's going on. So every patient, a person who is a patient, needs to have some person in their lives that acts as an advocate for them. That can be a family member, it can be a friend, it can be a professional patient advocate, but somebody who's gonna help them to traverse the system. And I agree with Regina that we need as clinicians, we need to include the patient and the family in their care. And this is something we've been talking about for at least 20 years that I've been working in the quality and safety space. Patient and family-centered care has long been something that we know that we have to do in healthcare. But, you know, and I see a few questions in here and in the chat talking about, you know, how siloed medicine is, right? And it is, we have become more and more and more siloed and healthcare has become more and more and more complex. So the care coordination isn't not happening for lack of trying. Everybody is doing the best they can. And the clinicians are looking at their practice and what they're doing for a patient. And they can very often as Gretchen, you know, brought up, they can get offended if somebody challenges that and their ability to be able to provide good care. So I think what family members need to do is first of all, understand the stress that our healthcare system is under. Understand what their, you know, the workload that they have and again, the complexity of all of the different hoops that they have to jump through. And that's a problem for healthcare and something that we absolutely are working on at the Patient Safety Movement Foundation and a lot of organizations is, let's reduce that complexity. Let's create high reliability systems in healthcare so that patients don't fall through the cracks. But that's gonna take time. In the meantime, the only solution is that those family members, those advocates for patients participate in the process. So Regina talked about being an informed consumer. No, do research on your own, but caveat to that is be careful what you find on the internet. So, reach out to trusted websites like the Patient Safety Movement Foundation for information or, you know, the NIH library is a wonderful place to find information that is, you know, is accurate. So, and so I think, you know, again, being respectful, but at the same time, asking, probing questions, being informed and, you know, think I'm gonna ask the question on here, asking about whether or not teams are coming together to discuss the case and agree on the care plan. Well, I think that's happening. I think people in hospitals are agreeing on the care plan, but it's not necessarily being communicated to the patient and the family and the advocates. So I tell people, make your own care plan. We actually have a template on the Patient Safety Movement website that you can download and keep, you know, and I recommend that people do it in pencil because it's gonna change all the time. So keep it, keep up with a care plan on your own. Take it to every single doctor visit. Make sure that your loved one doesn't go to the doctor by themselves without that family advocate present and continually update that care plan so that you can make sure that whatever is in their electronic medical record that's ever in their care plan matches what's in yours and that everybody has a good understanding. Can I agree more, Donna? Thanks so much. I wanted to ask Christina, how are you working in your hospital to ensure patients and families understand their role as a key partner? So when we talk to the people that we care for, we really, we have to understand their health literacy as we spoke about before. So one of the things to do that with is we look at, we create for every single person that we care for a my story. And what that involves is not a diagnosis, not a patient name, not a room number, but it's truly who is Mr. Smith? That is in room 303. And so we asked the person in the bed, we say, what are you here for? What do you normally do at home? And sometimes it's very difficult because as Donna mentioned, the healthcare system is very overwhelmed, staffing shortages and especially with COVID and a lot of stuff going on. But we recognize by simply just taking a pause and saying, okay, Mr. Smith is not a addict who's very aggressive, who's very mean and he's hard to deal with. He's a war veteran that is self-medicating with alcohol or truly understanding the person and his hobby is he loves to paint little model cars, right? So then every time we go into that room, we can say kind of bring up that common report that we've just built with him to gain his trust and understand truly he'll kind of open up to, you know, I am a little bit overwhelmed because it's just starting to build that person center trust. The other thing that we like to do across the entire care continuum, whether it's in the primary care skilled nursing facility, the acute care ER spaces, we like to ask the patient, what are their self-management goals? And that's kind of a hard word to describe and it's sometimes hard to get out of a patient. So simply just saying, you know, what is one thing today that you want to do to improve your health? And then we can kind of lead that conversation and what's important for that person that we're caring for. And it just creates kind of some ownership on the patient that we are listening. And we do want to know what's important to them. And we need from that to be in their care. Great, thank you Christina. I have one last question and I'll leave it to Jodi from the patient perspective. But you know, based on your personal experience with your mother, what would you say as a takeaway? What mindset should patients and families have when coordinating their care with healthcare workers in general? Yeah, well, a lot of takeaways. I mean, I think, you know, one thing to remember is, you know, medicine is a practice, right? It is not perfected. Doctors are constantly learning and practicing their craft, nurses too. And doctors and nurses are human, so mistakes are going to happen. So, you know, keep this in mind and ask questions. Don't be afraid to ask questions, right? Like as a family member, you are not the professional, right? It's okay to ask questions. It's okay that you don't know. There are no stupid questions, right? So ask, you know, be brave and ask more questions maybe then you even feel comfortable asking, but ask the questions, you know? And it is hard because, you know, in a lot of these settings, like you just don't know what you don't know. So you don't really even know what to ask. And, you know, I'm not saying that, you know, doctors were untrustworthy or didn't have the best intentions. I think they absolutely did. I just wish, you know, we had asked more questions of her and my entire medical team. You know, we should have asked, okay, you know, you're not gonna do dialysis today. Well, how is that gonna affect her heart today, right? Like, you know, we should have, you know, you think she's ready to go to rehab? Well, is her heart really ready for that? Like there were more questions that we should have asked and not just, like don't make assumptions. I think also, you know, demand for regular meetings with the entire medical team. And again, this isn't an acute setting, right? So, and if you don't have a case manager, ask for one. You know, I think in the hospital, my mom was in, they did not have that role or that staff. So that was a gap for them. But, you know, we should have demanded that there be some sort of case manager, some central person that we could have gone to to ask regular questions to get regular updates, especially in her situation where it was changing so rapidly. And I think also in the general day-to-day care, we talked about this a little bit in the primary care setting. I think make sure your primary care doctor is aware of other treatments you've had. So, you know, my mom's example, right? She had, you know, the electrocardiophysiologist who did the surgery for her implant and it was four months later that the staff infection was found. Well, during those four months, you know, she contacted that surgeon and said something just doesn't feel right at the implant site. And he kept telling her, well, bodies, you know, heal differently, you're fine. It's okay, don't worry about it. And she didn't have any other outward signs of infections. Well, she had perhaps been able to keep her primary care doctor aware that, hey, I've been calling my surgeon frequently about this concern. And then, you know, when she ultimately had the pain from the infection, which was in her spine four months later, she did call her, it didn't occur to her, this might be infection related from my surgery. It also didn't occur to her primary care doctor. You know, he ordered an x-ray at that point rather than a blood test, right? And if, so there have been more care coordination between her surgeon and her primary care doctor during those four months, perhaps they could have, you know, caught this sooner and treated it sooner. And the final thing I'll say, especially from my mom's situation was trust your own instincts. You know, prior to them finding the infections, my mom, she just knew that something didn't feel right. I remember talking to her on their phone and she would say, I feel fine, but, you know, something just doesn't feel right here where the infection was. But then, you know, the surgeon assured her, well, all bodies heal differently and she trusted him. And again, I believe the surgeon had the best intentions, but, you know, perhaps we should have demanded that she get a blood culture during those four months, right? And they could have caught that and perhaps caught that infection sooner. So I think trust your instincts, listen to your body and ask for special treatment if you need it. Or if you think you need it, just ask. Great, thank you, Judi. Those are all really great suggestions. And, you know, I can't thank you enough for being so strong and on this panel to share your story with everybody. Well, that's all I have in terms of questions. So with 20 minutes in mind, we'll go ahead and move to the Q and A. We have quite a few questions in both the Q and A and the chat, so I'll try to go through them. I think Donna answered a few of these already. So let me scroll. It looks like we have one from Una. As a doctor, I find patients are often too polite to interrupt to say that they have not understood something or voiced a concern. I wonder if we should offer tools to help in that situation, perhaps an agreed signal when something needs to be repeated or explained or when an anxiety needs to be shared without criticism. So, you know, more of a statement, but I wanna kind of turn that over to Christina. What do you think about offering tools to help in situations like that? I completely agree. I mean, oftentimes I'm sure as a physician described, you know, you hear yourself, I've done it before where you say, uh-huh, uh-huh, uh-huh. And then you walk away and you're like, oh, gosh, like, okay, I'm a little bit overwhelmed now. What do I do next? And as, you know, Jody mentioned earlier too, is just kind of bringing, sometimes it's just as easy, maybe just to bring a loved one with you, to where you have a little bit more confidence to say, okay, they're gonna tell, ask me why I didn't ask it later. So I'm just gonna go ahead and ask it now to where I don't, you know, I don't get reprimanded for my loved one for not speaking up. But I do agree on a tool of, you know, maybe some shared agreement with your physician, you know, just set the tone very early on. And it might be a little bit overwhelming because you're kind of vulnerable and knowing you should ask that or not. But I think that's a definitely great advice. I'd like to add to that as well, Sarah, if I may. You know, Christina talked earlier about a technique called Teach Back that we use all the time in healthcare or we're supposed to use. It's one of those best practices that doesn't always get done. So, but you know, I think one great tool or tip that I tell people, because I'm also a board certified patient advocate, I don't work in that capacity full time, but I do, I do counsel people frequently. But I make a recommendation that in order to, to continue to have that respectful approach and you know, and even for people who are afraid to ask questions, to just be able to say, so what I heard you say, let me make sure I understand what you're saying to me. You said this and repeat it back to them and look for understanding there, even if they didn't initiate that conversation. Agreed. And a similar question, I think in the chat, think I'm noted in India, the daily counseling of patient family is getting documented and a signature of a family member is taken. However, making sure that they understand is a challenge, which we're obviously talking about now, but I do wanna ask Regina, you know, from international perspective, you know, what do you think the solution could be for that? Can you repeat the question again? I guess overall, do you have any solutions that you'd like to provide from an international perspective for ensuring that patients and families understand what's being said to them? Come again, can you be louder please? It's kind of breaking. Yeah. Of course. So we have a question from thinkum. She says in India, the daily counseling of patients' families is getting documented and a signature of the family is taken. However, making sure that they understand is a challenge and I know that Donna and Christina just touched on this a bit from the US side, but what could be the solution from an international perspective? Again, I think it's really about empowering the patients for them to be able to know what all these processes are and what it means for them to be able to be part of the process of their care, giving them the right tools and the right environment because many times like everyone has mentioned, it's about the fear. It's about not being knowledgeable enough to be able to participate, but once they're empowered and have the right tools and provided with the right environment, patients really know better how to deal with their situations and can make very, very informed decisions and also make the work of the healthcare professionals easier. Of course. Great. Thanks Regina. I'm gonna move to the chat. We have a lot of activity in here. So just bear with me as I go through some of these questions, but there is one specifically about care managers. So for you, Christina, is a care manager employed by the hospital or would be hired someone independently? So it could be both ways and even some insurances provide targeted case management and care managers. For our organization in particular, we have care managers throughout. We have a client care manager that's a social worker for our community. We have two on one services where basically it's a call system that you can call in from anywhere in the community just dial simply two on one and you can get some care managers on the line that help advocate and point you in the right direction for different social determinate like food assistance, access to care, insurance questions. And there's many different systems like that that are set up through the communities. Typically the majority of organizations do have case managers, but sometimes case managers don't see all patients. So they may be understaffed or they don't have a policy where they have to see all patients. They may only see the quote unquote high risk patients. So it really depends, but there's also many different type of, behavioral health navigators that focus on mental health case management. So there's many different aspects of case management or care navigation. You just have to kind of know where to look for them. You have to know how to ask for them. So, and a really good, I think one of the most underutilized case managers is again, that of if you have insurance, that of your insurance, at least for the US side, just understanding your insurance itself and asking again for that. Great. Thanks, Christina. I mean, it looks like we have one more question in the chat. Excuse me. What systems are being put in place for persons living with dementia as far as communication of a care plan? I'll turn that over to Donna. Do you have any responses to that? Yeah, so I think, you know, we are just now getting to the point where we're understanding dementia so much better. And again, that comes back to what we were talking about before about the involvement of the patient and the family. I mean, the family or the advocate of some kind because in these cases, you know, those patients with dementia may not remember what is being told to them. So it becomes even more important that there is that communication. And again, that documentation, whether you type something on the computer, you have it on an app, you know, write it in a document, you know, being able to do that. When my late husband, John, was very ill, again, this was back in the late 90s, I literally had a paper chart with, it was this thick and I carried it with me everywhere I went. And, you know, and sometimes it was, it was a little bit unnerving for physicians. And sometimes they, you know, one doctor said, hey, can you come work for me? This is really interesting. You're, you know, quite organized here. So I think, I think that that's really what we need to do for those patients is, is, you know, take control of your own care plan. Great, thank you, Donna. I mean, it looks like we have one more question and I'll turn this over to Christina if that's okay. But Molly asked, is there any focus nationally on integrating palliative care as an option for those with chronic conditions to provide consultation so patients are more aware of their care options and also helping to look at care plans from a bird's eye view? 100%. And this is actually, I mean, this has been in the spotlight quite a bit often recently. So one of the things that we just realized and we really started working heavily on in our organization is talking about, I'll call it goals of care. So many people don't understand palliative care. So, you know, understanding your goals of care, what is your care plan? What's your potential, you know, are you going to get better? If you don't get better, how can we manage symptoms and what are your goals if the symptoms cannot get managed? What's your care plan look like? So in our organization, we really had a lot of opportunity to improve this. We had somebody separately talking about advanced directives. We had somebody talking about palliative care. We had somebody separate talking about hospice care. When really a lot of those conversations, it's goals of care. It should be all in one and all inclusive. And then we also took a light looking at our primary care perspective. We had an individual that was diagnosed with pretty severe COPD. And unfortunately, she's not going to get better. We can try to manage her some dumps. But one of the areas that they failed to do was saying, okay, because this is progressive, we need to have this vulnerable conversation and be comfortable with this conversation of as you start to decline, we'll help you manage your symptoms. But what's your care plan? What are your goals look like? And we learned in our primary care that we had a huge opportunity to be comfortable with those vulnerable conversations. But when you talk about primary care having that conversation or the acute care or skilled nursing or wherever that patient's at in that care continuum, we don't want it to be siloed. So it truly needs to be a, to the question palliative care program, process-wide, not siloed, or truly the entire healthcare system, be on the same page for knowing when and how to have the vulnerable conversations around truly goals of care. Very well said. Thank you, Christina. Well, I know we could talk about care coordination forever and ever. It's a very important topic, but it doesn't look like we have any more questions in either the Q&A or the chat, but it looks like Donnie had one comment. Yeah, I think there's one question in here that I would like to address that I think we kind of danced around, but Maureen had asked whether it's within the hospitalist's job description to communicate with all healthcare providers involved in a person's care. Yes, it is the expectation that the hospitalist is going to do that, but more than that, it is technically speaking, it's the role of the bedside nurse to coordinate and communicate care to everybody, because the nurse is really the only person that's always at the bedside. So when every different doctor comes, when the physical therapist comes and the respiratory therapist and so on, that nurse is really the constant there. But I think, again, let's go back to how complex the care environment has become. When I think about how different it is to provide nursing care now than it was when I started 31 years ago, it's amazingly different. And yet the number of patients that nurses have to care for is exactly the same as it was when I graduated in 1990. So there is some evidence that is out there that shows clearly that nurses are not able to coordinate care about 50% of the time. They're not able to do this because they have so many things to do. This is something that organizations need to take a look at that really is not a topic of conversation right now. So I think one thing that patients and families can do is begin to demand safer healthcare systems. When things do fall through the cracks, go talk to the executives in that organization. Go talk to risk management and say, how are you gonna prevent these things from happening again? Because right now there is not a big movement to do anything about reducing nurses' workloads to be able to make it so that they can be that effective coordinator while the patient is in the hospital. Yeah, I mean Donna, I can say, I mean, we experienced that firsthand, right? I mean, the nurse, and you could see, and this was pre COVID, right? How the nurses were so overworked and you're just so grateful for all that they did do for my mom. And I can't imagine now how much more it's become for them all. So that's a really good point. Well, and Rachel brings up a point that it is the job of the entire team. It is, it is. But again, the nurses is that safety net. If we were like back 31 years ago, it was a little bit different because I didn't have as many things to do. I didn't have to run down the hall into a two locked doors to get medications. All of my supplies were at the bedside. I was literally standing in front of my patient room saying, whoa, whoa, whoa, who are you? Where did you come from? And what do you want with my patient? Now the nurse doesn't even know that somebody came in and saw the patient. A physician could literally walk up the back staircase, pop in, see a patient, go downstairs and leave. And then go, you know, go to the electronic health record in the physician lounge and write a note. And the nurse never even knew that that patient was there. That didn't happen before electronic medical records because they had to come to me to get the chart. So, you know, so again, this is not because, this is not because the nurses are not trying. And so it is, it is a breakdown of communication across the entire system that is really leading to these care coordination problems. And when we look at the evidence, medical records is, you know, our medical error is pretty much 80% of it is coming from lack of communication. So, and Rachel brings up bullying and lateral violence. Absolutely. There is, there's a lot of bullying that happens in hospitals. There's a culture of silence around that. People don't wanna speak up and say things because they're afraid of the repercussions that are gonna happen. So again, all of those are issues that organizations can address if they take the journey to high reliability. And we are advocating for that here at the patient safety movement, but we can't do it alone. We can't, we can't be the only people out there saying that hospitals need to become more highly reliable. Patients and families need to demand that. Very well said. Perfect. Rachel agrees. We need people to speak out. That's exactly why we have webinars like this. Perfect. Well, I know we only have three minutes left, but it doesn't look like we have any other questions. I did wanna thank everybody for joining. And again, I appreciate all of our panelists' time and efforts in sharing their stories and giving a lot of really great insights that patients and families can take away today. Thank you, Sarah. And I see that we have a few more questions. We will take these back and I'll ensure that they get answered and we'll email them back to everyone that's joined. But thank you so much. We appreciate your time and we hope to hope that you can visit our website and hear our resources and any other things that we provide on the website. Thank you.