Nurse Burnout in the CHD Community Part 2

This episode of "Heart to Heart with Anna" is a continuation of the episode on nurse burnout. Part 1 of this two-part series dealt with identifying what kind of people tend to be attracted to working in the field of congenital heart defects, what qualities tend to be at-risk for burnout, and what keeps people in the field despite the difficulties. In Part 2 we'll look at what nurses can do to help themselves if they start to feel stressed, depressed or burned out. We'll learn what hospitals can do to help nurses and what members of the congenital heart defect community can do to reduce the stress their healthcare providers might feel in working with them. We'll also come to a better understanding of the role advocacy can play in nurse and patient wellness.

Other Heart to Heart with Anna episodes you might enjoy:

Nurse Burnout in the Congenital Heart Defect Community Part 1:  https://tinyurl.com/rwtuazs

Doctor Burnout in the Congenital Heart Defect Community:  https://tinyurl.com/rgtgwvn

Deena Barber's programs -- The Natural Course of Congenital Heart Defects https://tinyurl.com/w36ywtf

A Nurse’s Perspective: Changes in Care over the last 30 Years: Part 1 and Part 2
https://tinyurl.com/wrmy5rs
https://tinyurl.com/us4ac2o

Christy Sillman's program -- Rethinking Transition Care for CHD Survivors
https://tinyurl.com/vcfr7ms

Roslyn Rivera's programs -- CHDs Around the Globe - Novick Cardiac Alliance
https://tinyurl.com/rv3rcll

A View From the Other Side of the Bed
https://tinyurl.com/w7cydol

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Transcript

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Roslyn Rivera 1:29

It took a toll on my heart and so I realized with that I cannot be a nurse if I am not well myself.

Opening Music 1:34

Music from Home. Tonight. Forever. by the Baby Blue Sound Collective.

Anna Jaworski 1:42

Welcome to Heart to Heart with Anna. I am Anna Jaworski and the host of your program. Last week we talked with Deena Barber, Christy Stillman and Roslyn Rivera about nurse burnout, who's at risk, what qualities nurses in the congenital heart defect community typically have, and what keeps nurses in the field. Today you'll hear the rest of the story. In this episode we're getting to the heart of the matter to determine what hospitals and members of the CHD community can do to reduce nurse burnout and promote nurse wellness. With me today are Deena Barber. She's been working with adults with CHDS for the last 16 years and has worked in the field of pediatric cardiology for 19 years. I also have with me today Christy Sillman. She has a unique point of view as both an adult with multiple heart defects and as a nurse for adults with congenital heart defects or ACHDs. And to finish out the panel, I have Roslyn Rivera and she is an adult living with CHD whose experience as a patient in the hospital, led her to become a pediatric cardiac intensive care nurse. We have a lot to discuss so let's get right to it. Do you feel that your hospital or organization takes any measures to prevent nurse burnout or to encourage a focus on wellness and if so, what is being done and Christy , I'm going to start with you.

Christy Sillman 3:07

Yeah. I think there is a shift institutionally with many hospitals to sort of this focus on wellness programs for all of their staff members, including nurses and physicians. At Stanford there's a wellness program that focuses on both physical and emotional health - with rewards you can get extra money or little bonuses for participating in different wellness activities. Our ACHD program participated in a full-day wellness workshop together as a team and I found that was very helpful. From that we had a renewed focus on gratitude. We kept a gratitude jar in the office. We start our team meetings with a moment of gratitude and we really started to focus on personal boundaries and how to enhance our caregiving.

Anna Jaworski 3:55

Oh, wow. All of that sounds awesome. I think I should start my day with a gratitude jar.

Christy Sillman 4:01

Absolutely. Absolutely. And then I think also there's a lot of built-in processes institutionally like debriefings or what they call M&Ms , which are morbidity and mortality conferences after significant events to help staff process those experiences and hopefully lead to process improvement changes. But like I talked about before, there's more research showing that there is a level of trauma or even PTSD in some healthcare providers. The other thing that I know we offer at Packard and many hospitals offer is something called Schwartz rounds, which is like a grand-round-style event, but it's focused on the emotional impact of patient care and really sort of addresses the underlying issues of caregiver burnout or provider wellness and addressing the emotional impact.

Anna Jaworski 4:52

My husband's a nurse, so I talked to my husband about this and I said, "Hey, do you do M and M meetings at your hospital?" Now he does not work with pediatric cardiology, but he works in the operating theater and he said, "Yes." And I said, "Do you think that that helps to prevent burnout?" And he stopped and thought about it. He said, "You know, I never thought about it before. But yeah, it could because it's very easy to feel like even though you're in a room full of professionals, when something goes wrong, it's easy to worry about what your part in that process may have been or if you're at fault and when you're all talking about it together as a group, it's more like this happened to everybody, not just you." Do you think that that's how it affects you too , Christy ?

Christy Sillman 5:34

Absolutely. I am a big proponent of systems theory. We're all human and humans are going to make mistakes and we're not going to be perfect all the time, but if we can build systems of support to support the providers, then that's going to be what helps prevent sentinel events or disastrous outcomes. I think having these M and Ms, and sort of going back, it kind of puts the focus instead of on like, well, so-and-so didn't do this and this didn't happen and blah , blah . It's more, what's the system that failed here? What can we do to support everyone as a team better moving forward? You know, I've experienced that in the pediatric ICU, but even in the ACHD clinic, we've completely come together as a group and said, what was the failure here and what system can we put into place to prevent this from happening again or to make this be a better experience for the patient .

Anna Jaworski 6:32

I love that. Okay, Roslyn. Now, same question for you, Dear. What has your hospital or organization done to try to prevent nurse burnout or focus on wellness?

Roslyn Rivera 6:43

So at UCLA they actually have something that's called 'Wellness Wednesdays.' Every Wednesday they have either a musician come out and they partner with the university, UCLA, and they will play music in one of the theaters on campus. And it's during the lunch hour on Wednesday . So from 12 to 1:00 PM they're going to have someone come out who's going to play the violin for an hour so you can just sit and listen and take yourself out of your office or out of your busy day and just experience music or something else that can feed your soul a little bit just in the middle of the day. It's something I really think is powerful. It's a way to just take a break from where you are.

Anna Jaworski 7:28

Wow, I love that. But what about the night nurses who are asleep at that time?

Roslyn Rivera 7:35

(chuckles) So like there are other things at the hospital itself does. They do have like teams that come around, usually volunteers at the hospital that will bring like a little cart that has coffee or hot tea and granola bars or some cookies. They come around on night shifts as well. And that's just a little kind of pick-me-up that they like to bring around. It's not every day , of course it's maybe once a month, but it is something that people look forward to for sure.

Christy Sillman 8:01

And I wanted to add one more thing just because I think it's incredibly innovative. This new Stanford hospital that they just opened, I toured it and the entire third floor of the hospital is non-patient care floor and it's completely devoted towards wellness of both patients, family members and staff members. The entire third floor of the hospital. And so they have like a --

Anna Jaworski 8:26

So what's up there?

Christy Sillman 8:28

They have a fro yo bar, which I think is just so cool. They had a art gallery, they have these lounges, they have a whole outdoor area. They have, like at UCLA, musicians come. But I just thought it was so innovative to dedicate an entire floor of the hospital just towards wellness of everyone inside the hospital.

Anna Jaworski 8:52

I love that. I love that. I mean because as a parent, when you're there for 24 hours a day for two or three weeks and your kid is trying to get out of the ICU and trying to recover, it's nice to be able to have 15 or 20 minutes to go and look at some art or something to distract yourself.

Christy Sillman 9:12

Right.

Anna Jaworski 9:13

And if you're the patient, I mean when my son was 17 and he was recovering from his third open heart surgery, it would have been nice for him to have a lounge that he could go in that wasn't for the kids because he was in a pediatric hospital. It would have been nice if he could have been lounging in chairs that were made for adults.

Christy Sillman 9:33

Yeah. This is on the adult side. They have similar patient wellness areas on the Packard side, but on the Stanford hospital side, this was just like said, an entire floor dedicated to it .

Anna Jaworski 9:44

I love that. That's really awesome. Okay, Deena, what about your hospital?

Deena Barber 9:49

We have many of the same things. I wanted to talk a little bit about Schwartz rounds because I think Christy, I think you mentioned that you have that at your hospital, and I was actually really fortunate. The heart center was asked to have people be on the Schwartz rounds and it was about burnout and it was about frustrations. My ACHD colleague and I, along with one of the LPNs, we were able to talk about one of our CHD patients that was particularly frustrating and causing a lot of, I don't want to say "burnout," but it was just repetitive things that were really starting to wear on us as a team and it's not a place that you talk about diagnosis, you don't talk about treatment, it's how do you as a caretaker continue to deliver care in a really frustrating situation? And I found it to be exceptionally helpful not only to me and my team but the other people in the audience and I can't say enough about Schwartz rounds. I'm really pleased that our hospital continues to support it and continues to ask people, 'What are the topics that you want to see?' It's a pretty amazing thing. It's for you to share your feelings about whatever the topic may be. The most recent one was about being sued as a physician. And it was absolutely fascinating because physicians that I know and have worked with for a long, long time got up and there was a lot of tears and there was a lot of stress in that particular session because people were getting up and saying, "You know, I was sued and this is how it affected me." And there was people in the audience that stood up and said, "I'm a physician and I was sued and you know, I had some of those same feelings and what did you do about it? How did you get through it?"

Anna Jaworski 11:19

I love that. So that really, really helps people to express some feelings of frustration to other people who really understand it and who can maybe provides them some support?

Deena Barber 11:32

Yes. And provide support. How did you get through, what did you do? What did you find helpful? And it's very emotional. I would suspect it was our palliative care team that brought it to the hospital, to Akron Children's and it's done monthly. I make sure I try to go every single time because you just don't know what the topic is going to be and you just don't know how it's go affect you. And it's a community of people that you work with every day and you feel very supported and you feel like the hospital cares,

H2HwMichael 11:58

"Texas Heart Institute were offering us a mechanical heart and he said, "No, Dad, I've had enough. Give it to someone who's worthy."" "My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go." "Whatever strife or conflict that we experienced in our long career together was always healed by humor." Heart to Heart with Michael... please join us every Thursday at noon Eastern as we talk with people from around the world who have experienced those most difficult moments.

Disclaimer 12:27

This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in a podcast are not those of hearts unite the globe, but of the hosts and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Rejoiner 12:49

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna.

Anna Jaworski 13:08

Roslyn , I'm going to start with you this time and I'm wondering if you've ever participated in any professional development about wellbeing or about burnout and if you did, what you found helpful or unhelpful with that experience?

Roslyn Rivera 13:21

Well, I actually have not participated in any professional development about wellbeing, but I do have my own ways to help with my own wellbeing and to help me to prevent burnout because I do work in quite a stressful environment - not only at UCLA and my job in outpatient cardiology, but also when I do travel overseas. It's taken me a while because as a nurse I am not the best caretaker of myself. I've been able to realize that I do need to do some self care and really take care of myself in order for me to be the best nurse that I can. One of the main things that I do is go hiking. I really enjoy being outdoors. I live in Los Angeles and the hustle-bustle craziness of the city can really get to me sometimes. I commute on the dreaded 405 freeway.

Anna Jaworski 14:13

Oh yikes!

Roslyn Rivera 14:14

It can be really long, stressful days just driving into work, but I like to take on my days off. I like to go hiking with my dog and it's amazing. I've found so many great trails that are just outside the city in the mountains here that you would never imagine that I'm actually still in Southern California doing something like that - being outdoors. I enjoy going camping with friends. It's just a great way for me to unwind from all the action that's happening in the city and in my job and to just get away and to unplug for a little while. It's been very important to me and it's helped me to sort of allow myself to relax and not think about work so much and all the children out there that have heart defects and need help all the time.

Anna Jaworski 15:01

Oh right. Because that would be overwhelming. And especially with you not only your own hospital that you work at for our paycheck, but then the ones that you're also helping in these other countries. I can imagine that your mind travels to, 'Oh I wonder how this little one in Ethiopia is doing? Or Croatia.' Because you've kind of been all over the world, haven't you, Roslyn?

Roslyn Rivera 15:25

Yes, I have. I've worked in seven other countries along with the U. S. But yes, I definitely do think about those babies. And we provided their surgery but everybody knows that CHD requires lifelong care and are they going to get the care they need in five years or when they go through puberty or when they become an adult, how are they? It's actually something I think about outside of being there.

Anna Jaworski 15:49

Sure. I'm sure you do because you're a very compassionate and loving person. So was there a particular event that triggered you deciding, 'Oh, I need to have a certain number of boundaries now and I need to set myself up for some time to go hiking where I can just appreciate nature and not think about all of the stresses from work?'

Roslyn Rivera 16:12

Yes. So I worked in pediatric ICU for like 12 years and for the first seven years of that I was doing only night shifts and it was becoming to a point where I always not taking care of my own health - I wasn't sleeping well or eating regular meals. And it was because I just wanted to have to be my best at work and I just wasn't taking care of myself. So I decided to look for a new position because the great thing about nursing is that you can move around. So I did find a new position that was a shift and it was part time. So I was able to work enough to sustain my lifestyle, but also I didn't work in every single day. I had the time to travel for fun and also to do these medical mission trips. And so it was sort of, not really one main event, but just the culmination of me realizing, 'Hey, it's been several years and I'm really not sleeping and my health is going on a downline .' I guess I did actually have, I started having my own cardiac symptoms or I was having more palpitations and arrhythmias and I think it was primarily because I was too stressed, too tired and not eating well, that it just took a toll on my heart. And so I realized that I cannot be a nurse if I am not loving myself. So that was the main deciding factor for me to take a step back and give myself a break essentially.

Anna Jaworski 17:33

I'm so glad that you had that wake up call and it wasn't because you landed in the hospital, but more because, okay, you were starting to realize that your health was declining and you took care of it before it became a major issue for you.

Roslyn Rivera 17:48

Exactly.

Anna Jaworski 17:49

Okay. Christy, have you ever participated in a professional development program or a program for wellbeing for nurses?

Christy Sillman 17:57

I haven't, no. I mean outside of what is offered at our institutions. I mean I really haven't seen professional development opportunities focused on wellbeing. This podcast comes at a very good time when there is a little bit more of a focus on provider wellness and I really would love to see more sessions on this topic with usable tips on how to combat burnout and stress management at our professional conferences. Deena and I are part of a national ACHD nursing working group and we're in the process of developing a robust curriculum for nurses and nurse practitioners and physician assistants working in ACHD. So I know this is something that we might be able to also bring to the forefront as something to address in the future.

Anna Jaworski 18:42

Oh, I love that. I love that. You're going to have to keep me posted on that and what you all create because I do think this is something that's in the news right now. I think it's very topical and I do think that we need to be talking about it. The more we talk about it, the more awareness there is, the more likely we are to have some solutions. So Deena, have you ever participated in a professional development, wellbeing or burnout program?

Deena Barber 19:08

Not specifically for nurses. I do have one thing that I was involved with; I didn't do the whole course. Our hospital for Nurses Week gave each of the nurses in the institution, several years in a row, access to something called "The Art of Nursing" and it's a professional program and there's videos and there's chats and there's forums and there's books you can read and things. And I did do some of those programs. Like everyone else, life got busy and I never did finish any of it. It was really just nice to be able to have access to something like that. So I think that's probably the only thing that I've really done in a professional manner, but it was really good. I really did enjoy it.

Anna Jaworski 19:48

So do you think that this is something that perhaps some of the nursing conferences in the future will offer something on nurse wellbeing or working towards helping nurses think about their own wellbeing?

Deena Barber 20:03

Yeah, I don't know that it'll be specifically for nurses. And I just remembered something when you said "conference." I actually attended something several times now and it was called "A Patient Experience Summit." It's two days. It's all about the patient experience and it's so many different ways. There's architects there and there's business people there and there's lawyers there and there's nurses and there's doctors and it's people across all fields trying to make patient experience better and there was always some sessions that were about taking care of yourself as a professional and how you can do that and I want to quite a few of those. There was someone meditation, there was someone mindfulness, some of the buzz words that we're all hearing now, but they gave you, in a really short period of time, if you're having a moment and you need to take two or three minutes for yourself, what kind of breathing can you do? What kind of exercise can you do? What kind of at-your-chair-when-you're-in-the-middle-of-a-conversation-with-somebody and your stress levels skyrockets, what can you do in that moment? And I hadn't thought about this patient experience summit in quite the same way as with burnout. But in reality it really was very short sessions that really taught you some things that you can use, of course in your daily life, and in the grocery line or in the traffic as you're trying to drive to work. But I found that to be really, really helpful. They did some scent aroma therapy. You know, use lavender if you're feeling stressed, use peppermint. If you need to be a little more woken up instead of reaching for caffeine or sugar, take some peppermint and smell that and use that. And if you're having some stress, bring out your lavender stick and take a couple of deep breaths of that and do your breathing exercises they taught you. So in two to three minutes you deescalate from trying to pull yourself off of the ceiling to being able to go into that patient room or finish that conversation or take care of whatever it is that you needed to finish. So I'm glad you said "conference" because that made me remember that and I've not been for the past two years, but I intend on going next year because I found it so helpful.

Anna Jaworski 22:05

Wow. It sounds like a conference I want to go to. It sounds great. It sounds really, really helpful and there is such a diverse community of people that they are bringing together. That's great. That's how innovation happens.

Deena Barber 22:22

It is. The topics were quite varied as you can tell. The architects wanted to talk about how to make the space more inviting and what was actually helpful to patients and the business people wanted to know about the business end and the nurses and doctors and it was phenomenal. There were artists there and singers and painters and writers and just a whole varied group of people. But I did find it exceptionally helpful for my own personal stress level to learn some of these very quick, very easy things to do in the middle of my Workday to try and get through whatever it is that I was trying to get through.

Anna Jaworski 22:57

So on Wellness Wednesdays we can pass around lavender and peppermint. Oh , and share some tips with each other on this is what you can do. Okay. If you're really stressed out, take two minutes. I mean, I bet there are days that you don't even feel like you have two minutes. Isn't that true, ladies?

Christy Sillman 23:15

Yes.

Anna Jaworski 23:17

But wouldn't your day be better if you took two minutes and let yourself,

Christy Sillman 23:21

It is. It is better.

23:22

put some lavender in the diffuser and just gave yourself some time to do two minutes of deep breathing or write on a piece of paper, something that you're grateful for that you can drop in that Gratitude Jar. I just think that's brilliant. I think there are some things that we can do in a short period of time and I'm glad you said this Deena. It doesn't have to be a whole half hour because let's face it, we don't often have a whole half hour, but I think we can force ourselves to take a whole two minutes and sometimes that two minutes could make the difference between not wanting to walk into a patient's room and being able to bolster yourself so that you can go into that room with a smile on your face.

Anna Jaworski 24:06

Or go home and enjoy cooking dinner and enjoy facing your family without feeling like you just want to go home and put yourself to bed early. I bet happens a lot of times, you know?

Christy Sillman 24:17

Oh, yes!

Anna Jaworski 24:19

And that's not fair to your families or to you because you are a multifaceted person who deserves to enjoy your personal life without bringing home all the stress from the job that you face. So , okay, so we're going to have a new routine before we leave work. I'm going to smell a little bit lavender, write something we're grateful for , put it in the Gratitude Jar and take some deep breaths as we're on that horrible highway going home, right Roslyn?

Everyone 24:47

giggles and laughter

Home2night4ever 24:54

Home. Tonight. Forever by the Baby Blue Sound Collective, I think what I love so much about this CD is that some of the songs were inspired by the patients. Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazon.com, Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects. Enjoy the music. Home. Tonight. Forever.

HUG Message 25:33

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

Anna Jaworski 26:08

Okay, so let's talk about what the biggest stressor in your practices as a nurse. Because we've touched on a whole lot of things, but when I was doing research on different factors that can contribute to burnout, I was really shocked to see that one of the bigger contributors in the research that I read was having to do the electronic record keeping that has to be done because it feels like there's a lot more administrative work than there used to be and that nurses were happier when they didn't have to do that much and that contributed to burnout. So I want to hear from the three of you, what is your biggest stressor in your practice as a nurse and Deena, we'll start with you this time.

Deena Barber 26:48

Hmm . I don't really mind the electronic medical record. In my hospital we use Epic, which is probably something everybody here is familiar with or some of the audience is familiar with. It's not a big stressor to me. I think my biggest stressor is trying to get what I know my patients, not only need but deserve, in a healthcare environment (and I don't mean at my hospital in particular). I mean the whole health care environment doesn't understand and doesn't really care. I think it's really hard to continue advocating day after day after day for the right medicines or the right consult or the right hospital or the right treatment because the world doesn't understand congenital heart disease. Even the healthcare world doesn't understand it. I think that's my biggest stressor is trying to get cardiac rehab for somebody whose ventricle is not on the correct side so the company is not going to pay for it and trying to get people to understand. I find that very frustrating and it's almost on a daily basis, so I'd have to say that's my biggest stressor.

Anna Jaworski 27:51

Oh, I so understand what you're talking about. I have some friends who are extremely complex medically and insurance is not going to pay for certain processes for them because there's no research proving it and the doctors really just don't even know what to do with those patients anymore and it's heartbreaking. I can imagine if I were their nurse, that that would be a big stressor to me. Because like you were just saying, you are in it for the longterm . So you've seen some of these patients for years, possibly even decades. And when you see them go into decline and there's not a medication that's going to fix the problem, and rehab may, but there's no proof that it will or they've already maxed out their insurance. So there's nobody who's going to pay for it and it's not free.

Deena Barber 28:40

Yeah. It's very distressing. It's a perpetual problem. Just a different patient or a different 'thing' that's needed. And I think you can tell - I'm starting - I'm going to need some lavender because I'm starting to be a little stressed out just thinking about it.

Anna Jaworski 28:55

Oh no . Oh no. That's not why I'm doing this. Oh, my gosh!

Deena Barber 29:00

It is true though. You know, you ask the question, 'Do you think...?' Oh, you know, this is hard. This is hard. But that is definitely my biggest frustration and I try very hard to accept what can't be changed, but continue to push what might be able to be changed. And that helps with burnout, depression, anxiety, everything that we've been talking about. Sometimes you just have to stop this particular battle and pick it back up again tomorrow and try, try again. Because sometimes you just have to admit defeat when you have tried every single way that you can. And I think what really helps me in those situations is that I have never had a patient say, "Well, gee, you must not have tried hard enough." Or, "Gee, why didn't you bother?" Or... They're just always so grateful, almost to the point where I get teary-eyed I because they're so thankful. "Thank you for fighting for me. Thank you for explaining to me. Thank you for advocating for me. Thank you for helping me understand why I can't get what I need" and that's what keeps you going and coming back the next day.

Anna Jaworski 29:55

Wow. I just love that Deena. Okay. Christy, what about you sweetie? What's the biggest stressor in your practice as a nurse?

Christy Sillman 30:03

100% what Deena just described. I just echo everything she said. I think the times that I have lost it at work and bawled my head off have been when I know a patient needs something and the prior auth person, some person in an insurance company just won't even take the information because they didn't have classic chest pain or they didn't have whatever fits into a box. Well all of us congenital heart people are zebras and unicorns. It's very, very challenging to get the insurance companies and other medical professionals to understand that we're not going to fit in the box and I do see my work as very personal. Just like Deena said, you have these longterm relationships with people. Sometimes my patients are actually literally my friends. They were my friends before they came my patient and so I've had many a times where I am just bawling my head off with frustration because I can't stand the red tape or the barriers that are put in front of congenital heart patients and just patients in general in the United States . I will give a tip, Deena, that has really helped me is I got a very fun bell that I ring and do a little dance to whenever I get something approved. I call it 'The Prior Auth Bell' and when I get something approved I ding the bell and dance and everybody in the office laughs.

Anna Jaworski 31:42

And laughter is great medicine.

Deena Barber 31:45

I like that. I'm going to have to get a bell.

Anna Jaworski 31:45

That sounds brilliant!

Deena Barber 31:48

It is brilliant. It is brilliant. Love it.

31:51

Okay. Roslyn, what about you? What's the biggest stressor in your practice as a nurse?

Roslyn Rivera 31:57

I hate to be the third bearer of bad news, but it is the exact same thing. So yeah, congenital heart defects are the number one birth defect, but there are so many barriers to get just the care that they need, these patients need and it's insurance companies denying it because like Christy said, it doesn't fit in a certain box. This medication isn't for a pediatric patient, so no, we won't give it to them. Even though it's proven that it would work to help them with their symptoms. They still deny it and it's trying to get an appeal for it and sending all these research articles and it's actually expanded my knowledge about several things. But it's still the work behind just getting something that's simple for one patient and that's happened over and over and it is extremely frustrating. And I actually got something similar to Christy 's , I bought a trophy of The Hulk and when I get a prior authorization approved, I bring out the trophy from my cabinet and hold it in my hand up like I won .

All 32:58

Laughter

Roslyn Rivera 33:03

So a little reward for myself for providing essentially basic care for a patient. But not only that, I mean with my travel , so the developing world, it's just frustrating and disheartening. The lack of care that's there. It isn't any of their faults, it's just the lack of education. There's not specific medical schools that even teach pediatric cardiology in so many countries. Some countries don't even have echocardiogram machines, so even getting properly diagnosed is something that's foreign to them and it's those babies and those families who -- still worldwide, it's the number one birth defect -- but they can't even get a proper diagnosis or the care that they need. That's also just as frustrating to me because I have been to so many places and seen the lack of health care really. This is sad .

Christy Sillman 33:51

Do you feel anger, I mean from the three of you just described to me, I could imagine really , really angry at certain times. Yeah. I think we're... (One) other thing is that as the nurses were the front line so our physicians don't necessarily have all the time to make the phone calls and do sort of the leg work and sort of can get escalated to the point where the physician will step in. But I think the majority of this battle is actually happening on the nursing or NP or PA level and so we get bombarded with this and I think it does cause anger. I definitely have felt anger from it myself and also motivation to want to get more involved in the advocacy and legislative process to advocate on a different level for my patients.

Anna Jaworski 34:44

Oh my gosh. All three of you would be awesome advocates. I'd feel sorry for any congressmen that got in your way. I just mean you are so articulate. You would really be able to explain to them why we may need to change some laws or why we need money to help us with certain things.

Deena Barber 35:02

It's interesting that you would bring that up, Christy, because I never even thought about this, but sometimes you just don't think outside the box. Clearly I wasn't thinking outside of the box. That is something that I have been involved in for the past -- this'll probably be my ninth year, maybe? That every spring, the Pediatric Congenital Heart Association, and it was the Adult Congenital Heart Association (although I don't see them coming this year) sponsor an Advocacy Day on the Hill and it's a two-day conference, if you'll call it that. The first day we learn about what we are asking about, what are the things that we need from our congressmen and senators. We have education, and then the next day we actually go to meetings with our senators or their staff, the representatives, so from who I can vote for or not vote for, and we have a chance to sit down with these people. Sometimes your actual member Congressman might be there or your U. S. Rep might be there or their staffers and you actually get to sit down and talk to them, and I've had some amazing experiences on Capitol Hill. I've seen some politicians change their mind on certain things based on hopefully what we've been able to bring to the table and Roz and Christy, I know you would be hugely effective in that environment.

Christy Sillman 36:15

I think we've both done it. I think I've done it. Yeah, I think Roslyn's done it, too.

Deena Barber 36:18

Did you guys both go? Do you not find that one of the most powerful things? And you talk about helping burnout and to help about the community is to be able to go and be that voice. I find that to be an exceptionally powerful experience and it keeps me going all year long, emailing these people back and forth and sending them notes and making phone calls and saying, you know, I remember you saying that you would support this and I don't see your name on that bill. I was in that room. I remember you saying that I'll be waiting, especially at the next election and that has a lot of clout.

Christy Sillman 36:52

I agree . That experience really changed me as a patient, learning how to advocate for myself and then also as a provider, just like you said, it sort of lights a fire under you that sort of carries you through the year.

Anna Jaworski 37:08

You know, I wouldn't expect something like that to help with burnout, but that really does make a lot of sense. You are so right. That's very empowering and I love that. That that could be something that would help maybe to diminish some of the burnout that you feel because it's empowering you and it's empowering your entire community. And I love how, you're so right - when we all come together, it really was awesome to sit in that room full of other doctors, nurses, heart patients, parents of heart patients. I mean we ran the gamut. The number of people that were there, we spanned all different parts of the congenital heart defect community and it really did feel good to know that we were all unified and doing something together to try and change laws, which is not an easy thing to do or to try and provide money for laws that had been passed because it doesn't matter how good the law is, if there's no money behind it and nothing is going to get done. So I love that. So that answers part of what my next question was, which is what can we as a heart defect community do to prevent nurse burnout? We need to get all our nurses to go to the, to the Hill to work together and to take a little break. We'll bring some lavender or do some yoga together, but I'm going to ask each of you in turn if you have another suggestion for something we can do to work as a community to prevent nurse burnout and Roslyn , I'll start with you this time sweetie.

Roslyn Rivera 38:39

So I think that I became a pediatric cardiac nurse because of how I was born with the heart defects . So for me, being a nurse isn't just me taking care of another person, another child, it's actually because I wanted to take care of a child who was just like me. And so therefore it's very personal to me. And I think that I , sometimes I'll talk about it with some of my patients and their families about my own heart story, but usually not. And I think that we touched on why medical professionals choose pediatric cardiology or adult congenital cardiology. And it's because it's a unique field and I think that as the heart community, just understanding that your medical providers your nurses, your doctors, they chose to work with this population because of something special that sparked their interest. It may be something, like me, where I actually was a patient myself and a patient still, or it could just be that pediatric cardiology is just ever-changing and it's changed since I've become a nurse 15 years ago. And I think for the heart community to recognize that the nurses that are caring for their children or their family, we really share so much with them and we share their emotions, we share their frustrations at the system or as things don't work properly and we really truly care. And just having that understanding that we're not there just for a job and to make money. I think most congenital heart nurses that I've met across the board really truly empathize with their patients and the families. So to just recognize that we're in this fight with you and we want the best for all congenital heart patients.

Anna Jaworski 40:24

Okay. I love that. So to view you guys as an ally and more as a team member and not just the person who's in the room, filling out the paperwork and getting the paycheck. I totally get that. Okay. Christy, what about you?

Christy Sillman 40:41

Yeah. So as a community, I think the advocacy that we discussed , and then I'm kind of thinking also on an individual basis. So my best insight comes from the shift I've done in my own personal life as a patient, since I started working in CHD field, whether that was the pediatric ICU or ACHD, I have taken so much more ownership of my own healthcare . Part of it is I was out of care for 10 years and didn't really get transition education. So I've had to figure this out on my own and really focusing on my own organizational and management skills. So I try to really focus on returning those phone calls promptly, getting those lab drawn when they're due, and keeping a symptom diary when I have symptoms. Because all of that organization helps to set up my providers to do the best job they can do. So I recognize that I'm a major part of my own medical team, and if I'm not doing my part to take care of myself or to communicate my needs and concerns, then they're not going to be able to do what they need to do.

Anna Jaworski 41:45

Oh, I absolutely love that. And there are so many apps now that can be used to help you with keeping track of your symptoms and even good things like keeping track of your weight or how many steps you're walking every day or any of that kind of information

Christy Sillman 42:01

And from a provider's standpoint. I mean, and patient's standpoint, because I wear both hats -- it's much more powerful if you go into a doctor's appointment and you say, how have you been feeling? "Oh, sometimes I get some pain; it's here, I don't know." Versus "Three days a week, when I'm going upstairs I have felt this and I'm doing this at the time and I have felt this associated symptom and it lasted for this long." That is so much more powerful for your providers than it is then this sort of like, "I don't really know, it just sort of feel blah."

Anna Jaworski 42:33

Right. So the more specific they can be, the more empowered you are as a nurse to make a difference.

Christy Sillman 42:40

Right. And that sort of takes a lot of the legwork of trying to pull stuff out. I mean I understand, but there's sometimes you just can't keep track of it all, but I think the more you can and the more organized you are, the less legwork that takes off of your providers and the more they can just dive in and start helping you .

Anna Jaworski 42:59

I love that because that's something everybody can do. Okay, Deena, you get to round us out, sweetie. What can we as a heart community do to help prevent nurse burnout?

Deena Barber 43:11

I really agree with what both Christy and Roslyn said, but I think mine boils down to one word and that would be 'honesty.' I really can't help somebody if I really don't know what's going on and boy, I wish all of my patients were like Christy and I'm sure Roslyn is the same way. But honestly, I need you to just be honest with me. If you have no idea when you get your pain, don't sort of go with my leading questions, which I know better than to do, but just tell me and if you are smoking or you have used a substance (maybe you shouldn't have) or if you are going to get that tattoo or if you have no intention of taking that medicine, it's okay. I think probably most people have a shared medical decision-making model in the adult world in particular, where if we don't know what you're going to do or not do, we can't really help you. So if you could just be honest with us, if you have no intention of returning my phone calls when I call you about your Holter results, just tell me, "Hey, I don't really care what it is. Send me a letter if I'm going to have a problem. I'm not going to answer you" or "Yes, I'll respond but I love the idea of that medicine, but I'm going to have to think about it for a couple of weeks" instead of us getting a notice from the pharmacy that, 'wow, they never picked it up. They never get the refills' or whatever. We really push that, that it's not our life to live. I can't make decisions good, bad, or otherwise for my patients. I can educate them, I can inform them, I can support them, and I can be a sounding board for them. If they could just be honest with me and I'm really amazed, happily, and thrilled that that has been one of the reasons I think I enjoy my patients so much, is I can be honest with them. They can be honest with me. The good, the bad, the ugly, and I just think it makes for better patient care all the way around. That's what I want my patients to know. Just be honest with your team. Just tell them .

Anna Jaworski 45:05

I think it would be so much more empowering if my patients were honest with me. Like what you're saying, Deena I like the way that you said. Just be honest with me. Even if it's not something that you think I want to hear, I'd rather know the truth then to be denied that information that could actually help you to be an advocate for that person.

Deena Barber 45:27

Yes. Yes.

Anna Jaworski 45:28

I don't think most patients are thinking, 'Well, I really need to be honest with my nurse to help prevent her burnout.'.

Christy Sillman 45:35

No

Deena Barber 45:39

No, it does. Very much so.

Anna Jaworski 45:40

I think it's important for people to know that and I'm glad that you were brave enough to say that on the air, Deena. Because that's a certain amount of vulnerability that you have been willing to share with other people that just may help -- who knows how many nurses out there?

Deena Barber 45:57

I hope so. I sure hope so.

Anna Jaworski 45:59

I just love that. I love this whole show. This has been really empowering for me. I feel like I've learned so much. Thank you, Deanna , for coming back on the program and sharing so much information with me today.

Deena Barber 46:11

Well, thank you for having me. I really appreciate it.

Anna Jaworski 46:13

And Christy , you were amazing. I learned so much and I always appreciate listening to an adult with a congenital heart defect talk about their experiences. I think it's really good to hear what other adults are feeling.

Christy Sillman 46:28

Right. Right. And I just echo what Deena said. I think from the provider standpoint, I need you to come to me with honesty and openness so I can meet you where you are. And then, as a patient, I want you as a provider to explain to me what y ou're thinking and what your rationale is for certain things so I can understand and have some i nvestments in my care plan, because now I understand why it's important.

Anna Jaworski 46:56

Right, right. Oh, I just love that. Thanks so much for coming back on the program today, Christy.

Christy Sillman 47:01

No problem. Thank you for having me.

Anna Jaworski 47:03

And Rosalyn! It's been so good to talk with you again, my dear. It's been a while since we've been on the air together.

Roslyn Rivera 47:11

It sure has. It's been great though, coming back and talking about this. Now, I feel much more empowered, too, as a nurse.

Anna Jaworski 47:18

Oh , I love that. See, just doing a podcast we've worked a little bit towards preventing some nurse burnout. I love that. Well , thank you so much, ladies. That's it for this week's episode. Our episodes are archived on YouTube and Apple Podcasts, as well as iHeartRadio, Buzzsprout, Spreaker, Stitcher, just about any place where you hear podcasts you will find Heart to Heart with Anna. And if you did enjoy this week's episode, please consider becoming a patron. Just go to www.patreon.com/hearttoheart and pledge a monthly amount to support our program. We really do appreciate your support. We will have show notes with lots of different links to the previous episode that these wonderful guests were on so that you have even more great listening experiences. So thanks for listening today, my friends, and remember you are not alone.

Conclusion 48:14

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your Host, Anna Jaworski, can be heard every Tuesday at 12 noon Eastern Time.