Episode 2: Compassionate Care of Frequent Flyers

This transcript was generated automatically. Its accuracy may vary.

Cara Lunsford

Oh, hey, nurses. Welcome to the Nurse Doc podcast. Giving nurses validation resources and hope. One episode at a time. Oh, Today on Nurse Dot podcast.

Shalla Newton

I heard the doctor say maybe she's just nervous. Maybe something just happened in her personal life. She just might be going through a rough time. There's nothing medically wrong with her. And I opened the door and I said, I heard that. And I said, You couldn't be further from the truth. You're missing something.

Cara Lunsford

Joining us today, Shayla Newton, registered nurse, MSN published author and the co-founder of an online rare disease website.

Shalla Newton

He ran just traditional labs, didn't go any further, sat me down and said, Darlin, there's something wrong with you, but I will probably find it on your autopsy.

Cara Lunsford

I'm your host, Kara Lunsford, a registered nurse and VP of community at News.com. Oh, Shala Shell and Newton. I'm so excited to have you with me today for this podcast. This is a really special episode because I think that talking about the compassionate care of frequent fliers is something that we all really need to kind of get in touch with.

And I could not think of a better person to speak on this subject than you. You are a published author. You have a website on your chronic illness that we'll talk about later. And not only are you a nurse, but you have extensive amount of experience in the hospital as a patient. And so you're the perfect person to speak on this subject.

Cara Lunsford

And I really am just incomplete, all of you.

Shalla Newton

Thank you. I feel the same about you. So it was. It was amazing to meet you. You know, I always feel that things are very intentional. So what you are doing with Holly Blue and what you have done since, and then when I saw that you guys merged and came over, there were alliance nurse dot com, I couldn't have been happier and immediately reached out and was like welcome and yes.

Cara Lunsford

Yeah it was so nice to have a friendly face. I was like, Oh my God, I know somebody here, I.

Shalla Newton

Have a friend, I have somebody on teams. I can, I can message.

Cara Lunsford

Right, exactly. Well, let's kick this thing off, Shayla, because we have a lot to talk about today. Like I said earlier, not only are you a nurse of, I believe 15 years, you also have spent a lot of time as a patient in modern day health care. Can you tell me a little bit more about that?

Shalla Newton

I was born with a super rare genetic mutation known as CTLA four hablo insufficiency. There's about 135 cases known globally. My particular allele variation, or where the mutation is on my particular gene, has not been seen in others. So they do call it and have one. With that being said, it has caused a lot of different primary immunodeficiencies so I'm just severely immunocompromised.

I don't produce sufficient antibodies. I live on IVIG or immuno globin replacement and I don't mount a response to vaccines very well. The other thing that it has been the ultimate trigger to is a super rare auto inflammatory systemic disease known as Still's Disease Pediatric. It's known as SGA or systemic juvenile Idiopathic arthritis. And as an adult it's known as HD or adult onset Still's disease.

It depends on where you're diagnosed. They are the same disease, the same continuum. It it causes some severe complications, including blood clots and massive, massive inflammatory or cytokine storms that can be potentially deadly. It's much more common to do genetic testing and there's some great genetic companies out there now. But I'm in my forties, so we just don't have this.

And it wasn't something they recognized other than traditional neonatal screening that's done at a state and national level. So pediatric experts generally are the ones that catch this. So someone like me exists in this void that really I have I have two pediatric, extremely rare diseases, but no adult provider wants to take that on. I went through six rheumatologists.

They all look for the traditional antibodies. Biggest thing that hurt me was that when a provider would just say, Oh, it's in our head, the worst case I ever had was to primary care. My very first primary care provider. When this all started, I spiked 106 fever, thought I was dying, ended up having pneumonia. That was the first time.

It's very common for me to get pneumonia, but a lot of things happen. There are a lot of signs he ran just traditional labs, didn't go any further, sat me down and said, Darlin, there's something wrong with you, but I will probably find it on your autopsy. That was the last day I saw him. I was sent the next day to a partner of his.

He ran more labs, found the pneumonia. He sat me down and said, As a nurse. As a nurse, what would you say? And I said, I think I know where you're going with this, but this isn't in my head. Something's wrong. And he's like, I can't help you. So I was sent off to rheumatology and my journey really began from there.

But that was the day that I took over my care. And I said no, and I became my own advocate. But not everybody has that. Not everybody knows what to do. Not everybody knows, you know, how to navigate and say, No, not okay.

Cara Lunsford

As health care practitioners, we have the opportunity to listen and validate our patients or risk being seen as patronizing, condescending and possibly worse, gaslighting.

Shalla Newton

They kept saying, Oh, you probably have some like autoimmune. I said, Hey, I've seen like five rheumatologists. They all think it's something more auto inflammatory, something more different. With my immune system. But you don't have a diagnosis. And I said, No, I don't yet officially. Well, then you don't have a diagnosis. They told this to the doctors and I will never forget this.

They left the door open. Right. You know, it's not soundproof. And I heard the doctor say maybe she's just nervous. Maybe something just happened in her personal life. She just might be going through a rough time. There's nothing medically wrong with her. And I opened the door and I said, I heard that you couldn't be further from the truth.

Shalla Newton

I'm very happy in my life. I'm fine. And I said, You're missing something. And the nurse looked mortified. But in that opportunity, she didn't feel comfortable speaking up because she and I had had conversations and she was starting to put two and two together and whatnot.

Cara Lunsford

I love that it was a nurse that started putting it all together for you. I also want to touch on the fact that there was a really incredible practitioner in your life, and if I remember correctly, it was your surgeon, is that right?

Shalla Newton

He literally started kind of getting the ball rolling. He's like, Listen, I'm going to get the best infectious disease and I'm not going to get the B team here. He's like, Something's wrong. There's so much inflammation, something's not adding up here. And he knew enough to know that something like that with autoimmune auto inflammatory, something immune was going on.

So then it was like a whole bunch of people were in and out. And in the end I didn't leave with a diagnosis, but everybody kind of suspected this. The cells. I think it was the nurse in me that kept me going. They kept me fighting for an answer.

Cara Lunsford

It's so incredibly important to be your own advocate. If you can be having the level of knowledge that you have as a nurse gives you a leg up on that. As health care practitioners, it's incredibly important for us to know the value of showing up for people when they are vulnerable. Oh, coming up on the dot spot.

Monette Chiarolanza

In that moment, my heart just sank and I thought, I have an opportunity here to help him overcome this.

Cara Lunsford

Hello, nurses. I'm your nurse. Tor.com girl. Are you tired? Burned out, listless. Are you looking for peer support? The answers to all your problems are in this little website. Nurse dot com nurse dot com contains community allies, resources and education with nurse dot com you can browse your way to health. It's so easy too. So why don't you join the millions of thriving nurses who have their nurse life all in one place and check out nurse dot com today.

That's nurse dot com. Oh. Welcome to a segment we call the dot spot where you will hear more of your voice and a little less of mine. You can visit nurse dot com forward slash podcast to share stories, feedback and requests. As a valued listener, you will also receive discounts on nurse dot com courses and see use by using code nurse dot at the checkout.

Oh. We received a request from emergency room nurse Monat Share Lonza. When Monique called in, she shared with us about how she has been able to find compassion when caring for people struggling with substance abuse and how she uses this very special story as a constant reminder.

Monette Chiarolanza

So this particular patient was just such an eye opener for me. I was so glad I asked because I asked how old he was when he started heroin and he said 13. I'm sure my jaw just almost hit the floor. Like those moments where you're like, Put your face back together. Like, don't do that face. And I said, 13, what happened in your life that turned you to heroin at 13?

And he kind of looked down and he said, My dad injected me at 13 and said, Now you're old enough to do this with me. He wasn't an addict because he just went out and started doing drugs and became an addict. He was an addict because the person in his life that was supposed to protect him and guide him and care for him injected him with heroin and put him on this path of addiction.

No fault of his own. It was his parents who did it. And in that moment, my heart just sank and I thought, I have an opportunity here to help him overcome this, how I treat him as his caregiver, because he probably has zero trust and caregivers could put him on a path to becoming clean or he could leave this hospital and go right back to it.

Infection free, but still an addict. So any time I heard a nurse start saying, well, he just wants his pain meds or I'll give him is delighted when I get time, I'd ask them, Have you heard his story? Do you know how he became an addict? And they're like, No. And I would tell them his story and they would stop in their tracks and they would they be embarrassed.

They would say, Oh my gosh, I didn't know that. And at some point I would say, What's because you didn't ask? You've got to ask. You've got to get to know these patients, because whether he's a frequent flier or the next person that comes in on the floor, like there is going to be another addict. So learning how to be compassionate towards addicts and getting to know them is is so important.

It's so important to us to really, truly understand that everyone has a story. I've had times with our frequent fliers where I've had to say, picture them as that little toddler running around the front yard. There's two ways this could go. They could either have a parent who treats them with love and kindness, and now that parent's heart is broken because their child is an addict and living in a way that they don't understand or that parent was not a good parent and either abused that child or exposed that child to drugs or did horrible things to that child.

And now here they are in my emergency room. Which person am I going to be in their life? And I have to do that every night because without that reminder for myself, I'll be honest, it can be hard to not be hardened and cold because we think of sick as disease processes, not homelessness or I'm hungry or I'm high or I'm drunk.

And so those reminders just reevaluating my thought process and switching my perspective or my perception of that person really helps. Oh.

Cara Lunsford

Coming up in our next segment.

Shalla Newton

I have to be honest, I'm not sure. I'm not sure I really like the word frequent flier. Oh.

Cara Lunsford

I know that the topic of this episode is providing compassionate care for frequent fliers. And the reason why we use that term is because it's something that we all know within the health care system, that when we refer to somebody as a frequent flier, it's somebody that frequents the health care institution. Often times in the emergency room for a variety of reasons, we have a certain demographic that we may consider to be frequent fliers, and we need to be able to be compassionate towards people that are looking for a warm place to stay.

They're looking for a meal and possibly they are an addict and they are looking for something to relieve them of their withdrawal symptoms. But what we don't oftentimes think about is the people that have complex care have chronic health concerns, and they keep ending up in the hospital because of suboptimal care. What are your thoughts on just the difference between people receiving suboptimal care and the term frequent fliers?

Shalla Newton

I have to be honest, I'm not sure. I'm not sure I really like the word frequent flier, and that's common among the chronic ill community because there's this label and I am absolutely guilty of it as a nurse, as a provider, we all are. But frequent flier for lack of a better, I guess, higher level definition. I mean, it really often is somebody that comes in and out of the E.R. is what we think, you know, and that they don't need to be.

And they're there for many reasons, but always there. It could be a common person that gets readmit. And a lot of somebody like that has heart failure. And maybe they aren't being compliant. Maybe they're eating a lot of salt. It does happen. So there are some legitimate reasons that are self-inflicted wounds. But majority of people with chronic illnesses that are quote unquote, frequent fliers are there because of subchapter Mulcair, because our health care system is broke.

We all say it. It's a sick care system. We practice reactionary medicine in the U.S. versus preventative for people that have rare and complex diseases. When we say, well, they should be seeing their primary care doctors more all that well, it's not always possible from personal experience. No PCP wants me. I always joke and say that I'd be a great actress because I take rejection so well.

Don't call us. We'll call you this is where I use my nursing skills and I will get right with a nurse. This is how I got my most recent PCP. She was closed, but she had great reviews for dealing with complex care. And I literally went in, nurse to nurse said, This is the situation. No one will take my case, but let me disarm this.

Let me make it so she doesn't spook and run away. These are the only two things that we need her for. She's not going to be managing all the complexity is all the really high level, all the scary stuff. These are the two things that we need. Is she willing to do that? Absolutely. Took my case. So that's something that I often tell parents, patients and frankly, other nurses when they're trying to get a patient in that has complex care needs, utilize your privilege as a nurse, pick up the phone, call the nurse, explain the situation, explain really what the person's going to be there for.

They're not going to be there for all their health care needs, but these are the specific things that they need. The other tool or tip that I always give both patients, providers and nurses that patient should know their health care history more than anybody that includes a provider. They should know their labs, they should be engaged in their health care history.

They if they don't use a portal, they should if they're unable to use a portal, that's again, where a health care support team comes in and somebody they can help manage their care, I carry a document with me. I make copies, I update it. It first talks about who I am as a person, and then it goes into details a little bit about my disease because it is so complex and I absolutely don't don't expect anybody to understand it.

Unlike myself and my immediate rheumatology, immunology, people that are in the space and get it. But if I get admitted anywhere or a new provider, including this new PCP, it was so helpful because she understood the background. I said, these are the things that maybe may affect me. I had a hospital acquired infection recently, so this is what we need you to do is monitor to run these certain labs every week as a standing order.

We monitor that. We watch for it to make sure that there's not a multi-drug resistant infection that I need to go in to the hospital. These are the main things. So, you know, we if I have to be in the hospital, I'm standing orders for that. We do a direct admit we don't send me through the E.R. because we don't want to expose me because my immune system is so bad to pick something else up.

I go always to the same floor. Now, granted, you know, that's not always going to be possible if there's overflow in the hospital's packed. But the floor that I go to, the nurses know me. So there's a primary nursing model. They tend to generally give me the same nurses day and night. And of course there's going to be schedule shifts and all that.

But the general pool of same nurses so they know and they know what's going on. And then I was able to educate them. They have this document because what it does is they make a copy of it. It goes immediately into the front of my chart so that anybody that comes on to service, that's taking care of me there, they read it and it's not too long.

So they're not going to be like, Oh, no, no, thank you. But it gives all the pertinent stuff. It's bolded where it needs to be. It gives all of my medications morning, night in between, which ones are critical that are timely. For example, my blood thinner. Because when they ask you, when they switch shifts, hey, is there anything that you need right away?

I yeah. The only thing I don't care about the rest of my meds when they come, just the blood thinner. I bring any medications that they're course not going to have those get labeled and they go to sit in the fridge. The other thing is I'll always be prepared. I always tell patients and nurses can do this. Patients that have chronic complex diseases that are going to be in and out of the hospital to have a little extra supply, even if it's a couple days, two or three days, you know, enough that somebody can bring you more if need be.

If you have certain medications that you pretty much know, the hospital isn't going to carry because the hospital has a limited formulary sometimes. So what that means is that they might not have exactly what you're on. And for some people like myself, there's some medications that we've learned that just don't work. So we do want to continue to use the ones I have.

I make sure that I just have a few of those on hand always in case I get admitted. Most people with complex, rare chronic disease essentially have like a little to go bag. They're always ready to go at any point. That's a great little tidbit for patients when you have that document, like I said. So it has my disease stuff, it has my medication, but it also has all the doctors on my service and those that are important.

I highlight and I bold and I said, these are the ones you're going to want to contact, alert them that I'm in the hospital because unlike pediatric complex care, where the systems are generally all integrated, usually with adult care. Good luck with that. Everyone's on a different system. So that's why my core team is on a group chain, so they make sure they're alerted.

Oh, she's hospitalized. Oh, who admitted what's going on? What are we doing? Who is in charge? Who's down? Essentially project managing, right. That's what a good nurse who is trained in complex care and chronic care is a project manager. It's different than being a case manager because you're also delegating and working with a core team to be like, again, who's on first, who's on second, who's delegating, who's doing this?

Because you want to do that for medication, compliance, reconciliation, and make sure there's not any errors, that people aren't writing for the same drug and that people aren't talking. So these are all things that when people have chronic diseases, complex diseases, if it is managed better on an outpatient basis and they don't have suboptimal care, just keep in mind a lot of adults are experiencing this.

Look at the people with long COVID, and this is a perfect example. They're experiencing what those of us with chronic, rare, complex diseases have experienced forever a very fragmented and siloed health care system. And if you're not a child who has great, complex care, this is what we live with as adults. And there are ways to improve this.

And nurses can be that conduit. There are talks of fellowship, residency, complex care programs out there, and nurses need to be a part of it. It shouldn't be just for providers, for physicians. They are absolutely critical to complex care.

Cara Lunsford

So oftentimes when we think about the pandemic, it it brings up in us that it was a pretty dark time. But oftentimes out of a dark time comes a light, maybe some hope for change.

I think COVID opened our eyes for so many different reasons, right? We saw the disparities, inequities in health care. But I also see the light. And when I talked about it earlier, you know that we have an opportunity here as a health care system to get this right, that long COVID patients. Right. You know, they feel lost. They're in this fragmented, siloed.

I don't know where to go next. I have this, this, this, this, this. I have to see all these providers, but I don't know what to do. Nurses are that conduit, whether it's case management, whether you're a navigator. Insurance companies have such an amazing opportunity and they're doing a better job of reaching out for, quote unquote, you know, high utilizers chronic disease.

But hiring the right nurse, not just a body to get on the phone or call or triage, but somebody that has the training. There's academic centers that are starting these complex care fellowships that the first in their kind, they're going to allow nurses, not just physicians. There are nonprofits that I work with and organizations and legislative reform that I've done was mostly pediatric complex.

These kids that come back, the thing that we can learn from is that people with chronic complex, these frequent fliers, whatnot, a lot of them with rare disease, may represent a small fraction specialty rare disease patients like even less than 1%. But they're 30% of all health care costs, and they represent over 80% of preventable readmissions and, quote unquote, frequent fliers.

If we could train nurses to be able to understand and navigate complex care from the beginning, we would not only save a lot of lives, we would not only prevent, quote unquote, frequent fliers, but we would establish and I think, reestablish the love and the passion for nurses back in their career. I can tell you that it is an honor and it is a privilege that I always tell working in being in like the rare disease side of things.

But it is so complex, so many things. You're wearing so many hats, but in the end you're living on this island with these families when we have this ocean of resources. But they live on an island. The sooner that our health care teams learn to live on that island with these patients, the better. We are going to have less silos and be such less fragmented.

We're not going to have, I call it sick care health care system. It's secondary versus primary, Right? It's not preventative. And I think that with COVID bringing it back to the Long-Covid, these government paid centers that more and more people are coming into, we're seeing that we have to operate medicine and health care more that way. And we have to involve nurses at all levels.

Alvey In our end and he's whatnot, there's such a place more and more and more for and as well, who are so marginalized in so many states, including the one that I live in. So I think there's a place and there's a purpose also for physician led medicine to absolutely 100% often mine is because I'm so complex. But I think overall there is so much hope coming out of such a dark pandemic that we have learned so much with science.

Right. The immune system. What a crazy thing. But we have learned from people like me the medicines that they saved lives with, with COVID or something that I live with daily is hard as it was for people to get COVID, especially in the early. They were getting these weird immune responses and finding out, Oh wait, this person really has an autoimmune disease.

So you know, it helped and prevented things for them and led to a diagnosis. But there's such an opportunity for nurses to be right there on the front line and to really be navigating and steering complex care so that there is further prevention of these frequent fliers and to really practice a hand held, shared medicine, partnered care practice.

Cara Lunsford

For this has been such an incredible interview with you, Sheila. I have so many takeaways. Editing this down is going to be quite possibly the impossible. But I think what we've really been able to provide to our listeners today, and this is the goal of every episode, is that validation, resources and hope you were able to so beautifully and eloquently go back and forth between what it was to be a patient, what it is to be a nurse, how can we be better?

How can we provide compassionate care to people who are frequenting this health care system? And a little bit of hope in that we might just be getting it right or at least we're closer than we've ever been before. So I just want to thank you again for being here with me today, welcoming me into Nurse Starcom with such open arms and being just this incredible resource.

Shalla Newton

This was so much fun and such an honor. And I'm just so excited that you're doing this. This is an amazing thing. And I think it's a grassroot effort to bring the passion and the love to nursing. Oh.

Cara Lunsford

For those of you who would like to connect with Sharla, you can of course find her on the nurse dot com app. But if you want more information about Still's disease and her advocacy, you can visit SD That stands for Still's Disease. SD The 411. com. Don't worry if you don't have a pen or if you can't remember it, we will make sure to provide you with all of the resources and links from every episode at Nurse dot com forward slash podcast.

That's Nurse dot COM forward slash podcast. So if you are a nurse who enjoyed this episode and you have an idea for future episodes, you can connect with me by downloading the nurse dot com app. See you there.