Webinar: How can caregivers help when their loved one needs bladder removal?

February 5, 2024

Enhanced recovery programs can cover all stages of a patient’s bladder removal experience and have been demonstrated to help improve a patient’s health outcomes. Caregivers are the cornerstone of any multi-disciplinary team as they assume the care burden before surgery, while in the hospital, and immediately following hospital discharge. Advanced Practice Provider Navigator, Brandon Sterling, Ph.D., APRN, AGACNP-BC, CCRN, CMQ, from the University of Texas MD Anderson Cancer Center, explains how cystectomy caregivers are central participants along with patients, in enhanced recovery program education and preparation.

With Advanced Practice Provider Brandon Sterling

Year: 2024

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Part 1: Introduction to Enhanced Recovery Programs

Transcript (PDF)

Part 2: Cystectomy Caregivers in Enhanced Recovery Programs

Transcript (PDF)

Part 3: Q&A on “How can caregivers help when their loved one needs bladder removal?”

Transcript (PDF)

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Full Transcript of “How can caregivers help when their loved one needs bladder removal?”

Patricia Rios:

Welcome to the Bladder Cancer Advocacy Network Patient Insight webinar series. I am Patricia Rios, senior education and advocacy manager and your host for today’s webinar. Today’s topic is how can caregivers help when their loved one needs bladder removal?

I am delighted to introduce you to our guest speaker for today, Brandon Sterling. Brandon is an advanced practice provider navigator at the University of Texas MD Anderson Cancer Center and an assistant clinical professor of nursing at the University of Texas Houston Cizik School of Nursing. He completed his PhD of nursing at Texas Women’s University and has a research interest in caregivers and bladder cancer patient related outcomes. Brandon uses whatever spare time he has to help advance BCAN’s mission of increasing public awareness about bladder cancer, advancing bladder cancer research and providing education support services for the bladder cancer community by volunteering his time and expertise to serve on BCAN’s survivorship task force, as well as being a guest presenter.

Today Brandon is going to introduce us to enhanced recovery programs and how they’re used to improve the health outcomes of patients in need of cystectomies or bladder removal. Most importantly, he will explain the realities and experiences of cystectomy caregivers during each phase of the enhanced recovery program based on research. He will conclude by giving us insight into how patients and caregivers can be active and engage members of the healthcare team during the cystectomy journey. So without further ado, I’m going to hand it over to Brandon to begin his presentation.

Brandon Sterling:        

Again, I wanted to introduce myself again. y name is Brandon Sterling. I’m an advanced practice provider navigator at the University of Texas MD Anderson Cancer Center. And I’ve been tasked today with reviewing enhanced recovery programs, as well as going through the caregiver perspective within the context of enhanced recovery programs. And the cool thing is I actually did my dissertation research study on this, so I’m very passionate about it and I was telling Patricia and Stephanie even before we logged onto the meeting, I now have a very personal connection with being a caregiver, having had my own personal experience this past year, and most recently I’ve been a patient, so I’ve had the best of both worlds.

So I can relate on a certain level, but just having to depend on others, that’s just a whole new experience. So I’m happy to be here to go through my research and also really touch on enhanced recovery programs. So I want to first acknowledge the Beta Beta Sigma chapter of the Sigma Theta Tau, which is the nursing organization that helped to support my research as well as the Bladder Cancer Action Network- Advocacy Network, I really thank you guys for supporting me in my research efforts and helping to basically set this platform for more opportunities for research.

So again, what I’m going to do is briefly go over the background of bladder cancer, do an overview of enhanced recovery, and then really dive into the research findings in the caregiver integration. And then finally at the end, we will reserve some time for you all to ask your questions and I will answer them.

So of course bladder cancer is the fourth most common cancer diagnosis in men. Billions and billions of dollars is spent when it comes to bladder cancer and there’s actually quite a cost burden given the, excuse me, trajectory of care from initial cancer diagnosis to let’s say survivorship, billions of dollars is spent. And then one interesting factoid is of the 39.8 million caregivers in the US, 6 million of those caregivers are taking care of cancer care patients and of course enhanced recovery. If you haven’t heard it before, do not fret because what I learned actually in my research study that many surgery teams are more explicit, some are more explicit in describing enhanced recovery than others.

Brandon Sterling:        

So if you haven’t heard about enhanced recovery before and you’re like, “Man, did I encounter that during my surgical procedure? Or is this something that I can ask about while I’m doing my surgery planning for my loved one?” May this be a resource to you because again, one thing that I learned very early in my research study is that a lot of the surgery teams do not explicitly say enhanced recovery, but they do include each element within their practice. So we’ll get all of that.

So of course, radical cystectomy with urinary diversion is the gold standard treatment of muscle invasive high grade bladder cancer. So usually if you get the big diagnosis and you hear the word high grade and or muscle invasive, then typically the next question is when can we schedule you for surgery? And I’m a visual learner, so I included different photos here just so you can see the anatomy of the bladder. And when we say muscle invasive, that means it’s going through the urothelium into the lamina propria into the muscle.

And then I also included a couple pictures of different diversions. I could not fit the picture of the Indiana pouch, but do not fret. I did think about Indiana pouches while I was making this presentation, but we do have a picture of an ileal conduit as well as the making of a neobladder here.

Now, as far as the overview of enhanced recovery, I wanted to really highlight that many of the elements have been researched and shown to be effective, and it’s also been shown to decrease length of stay in the hospital and then also significantly decreased the 90-day readmission rate within radical cystectomy. And this picture of this lady here, I love it because it encompasses of the typical bladder cancer patient you will see. As you can see, she’s enjoying her cigarette and she’s an older lady, so bladder cancer is typically a cancer of the elderly population and those who have a strong smoking history. So I guess you could say that’s our mascot for bladder cancer.

Now, this slide here is busy, but the reason why I wanted to use it just to give you a general overview of the enhanced recovery program in all of its elements, and some call it the enhanced recovery pathway, some call it the enhanced recovery journey. So depending on the nomenclature that your practice uses or the practice where you’re getting your care uses, this is pretty much it. There’s a preoperative phase, an intraoperative phase as well as a postoperative phase. So the intraoperative phase, there’s minimal integration of caregivers in the intraoperative phase because they’re actually in the operating room. So the focus of that is mainly for the anesthesia teams. And again, I will touch on that.

So I will say probably the hallmark or foundational period for enhanced recovery is the preoperative period because this is when you are talking to the team about timelines you are going for your initial visit to the wound ostomy care nurse or the wound ostomy care professional for your initial counseling and marking.

Brandon Sterling:        

And that counseling can include, this is the urinary diversion I’ve chosen and this is how you’re going to care for it after surgery. Now, it’s really challenging because you get this tsunami of information, but if you’re anything like me and you’re a very hands-on person, it’s very hard to teach me something when I don’t have the actual material. So many patients have told me it’s very challenging to go to that pre-op visit and learn how to change the stoma, but I don’t have a real stoma to change it on. So that’s when postoperative, all of the real fun begins. And then also one thing that we really focus on in the preoperative period is to stabilize medical conditions. So if you’re smoking, you stop smoking. If you’re a diabetic, do we need to reach out to our colleagues to help control your diabetes?

And then of course, prehabilitation. And when I explain prehabilitation, some people are like, “Well, now do I need to go to the gym and start doing pushups?” And the answer to that question is absolutely no. So it could be a matter of just you walking to the mailbox or meeting with a physical therapist before surgery or a physical rehab specialist just to discuss some type of increase in physical activity before surgery. And what it does, it lays a foundation of what you can do after surgery. So again, this is a foundational period. This is when you select your… Well hopefully after you’ve selected your diversion, this is when you get into the nitty-gritty. But research has shown, and per my experience, a lot of this information tends to go in one ear and out the other. But if you’re in a very excellent practice, then what we like to do is provide our patients with multiple media as far as how they can access the information, whether if it’s a piece of paper, or a packet, or online videos.

And of course, we always direct our patients to go to the BCAN website for resources as well because there is a plethora of different videos and testimonials. And if you haven’t heard about it yet, of course, the Inspire platforms. So where you can pick the brains of other experienced caregivers or patients who’ve had the surgeries before. Because in my personal experience, I can always explain these things to a patient or a caregiver, but sometimes the best resource is someone who’s already been through it. And that was an ongoing thing throughout my interviews when I did my research, so we’ll touch on that a little later.

Brandon Sterling:        

And then of course, one major element to the enhanced recovery again is intraoperative. And basically like I said, there’s little to know interaction with the caregivers during this period of time because you’ll be in the operating room, your loved one will be in the operating room. So mainly it’s about keeping a normal temperature. It’s about maintaining a fluid balance because research has shown that back in the day when they used to pump patients full of fluid in the operating room, it used to cause a wide range of postoperative complications and one of the major ones being atrial fibrillation.

So if you think about it, once you’re fluid overloaded, then your baroreceptors go out of whack. And then it’s not uncommon, especially in patients with advanced age to go into these heart arrhythmias. So once they discovered that, “Hey, maybe we can be a little bit more conservative with the fluids.” Then they notice that the rate of atrial fibrillation, postoperative fibrillation decreased.

And then here is where I usually would come in when I worked inpatient is the postoperative phase. And if you see, I have this photo of this drill sergeant here because it was actually a team or a dream team of myself and the caregiver or their loved ones who turned into this drill sergeant because one of the tenets of enhanced recovery in the postoperative phase is movement, my getting you out of bed.

And then a lot of patients would be like, “Well, I have all these drains and tubes, so how am I going to do this?” So that’s when we would team up with nursing and PTOT and you would have a little ornamental gown where we would pin everything to your gown and make sure that we did whatever needed to be done to get you up and moving. And a lot of folks would be like, “Oh, I want to walk around two or three times.” And I’d like, “No, let’s try it for five or six.” Now, although we wanted to minimize narcotics, what we would typically do is start you on a non-narcotic regimen, which was scheduled, meaning that you didn’t have to ask for these pain medications because we would give it to you regularly. So in the event that the physical therapist just showed up randomly out of the blue, you would be ready because your pain would already be covered by those scheduled medications.

And when I say non-narcotics, it would either be intravenous Tylenol or oral Tylenol, Celebrex or some other non-narcotic pain medicine. And I think the strongest we would give for a narcotic at MD Anderson was tramadol, unless you had some really bad breakthrough pain. But I would always like to tell my patients, “This is an absolute.” Because ultimately for you to progress and heal, we needed to have your pain under control. And depending on different circumstances, if you had chronic pain or other aggravating factors, which cause your pain to be worse, it’s not like we refuse narcotics, but we was trying to minimize it. And I just wanted to say that every patient is different, but ultimately that was the goal. But being in healthcare, one thing that I’ve learned, there are no absolutes. So we would try our best to minimize narcotics, but if you needed that extra dose of a narcotic just to get you up and walking and to reach those discharge milestones, then that’s what we would do 100%.

Brandon Sterling:        

And then this is also when the wound care nurses or the wound care professionals would come in and do the diversion teaching. At MD Anderson the wound care nurses would have, you had a three-round rule with them. On the first two rounds, they would come and change the stoma. They would teach you hands-on literally with the stoma on the patient on how to change the wafer on the ileal conduit or do the flushing with the neobladder. And then that third round would be for you to do it yourself, the caregiver. So it was like you could not graduate and discharge without you showing the wound care nurse that you were capable of changing that pouch. And I will also add, at MD Anderson, we are very resource rich in the fact that our wound care department, it’s an entire department, meaning that they have their own outpatient clinics.

So our patients who needed an extra lesson, if you will, post discharge, then they would just schedule an appointment with the wound care specialists in their clinic maybe a week or maybe in a few days after discharge for them to follow up. And then one thing that I always would make sure my patients who are out of town, that we could find some type of home health agency that had a wound care nurse on staff or had somebody with knowledge of wound care and stoma care to come to their home and maybe do that follow up care. And then with the pandemic, of course, they were even able to offer video visits to patients. And you have this new thing that you’re doing, so sometimes it would just be the fact that, “I just want someone to watch me. I think I got it down, but I just want someone to watch me.” And they were able to offer those services even throughout the pandemic.

And then one more element of the enhanced recovery is the rapid dietary advancement. So this would vary depending on the surgeon. You would have the younger surgeons, they’ll be like, “Oh yeah, just start them on a regular diet post-op day one.” Whereas some of the more senior surgeons were like, “Okay, let’s do a stepwise approach to this and do the clear liquids and the more traditional advancement of the diet.” But one thing I had to learn living in Texas, and I think you all will appreciate this, I would have to tell my patients, “Your first meal after surgery on post-op day one should not be a cheeseburger with fries.” Or, “No, you cannot have that barbecue brisket brought in from Pappas Bar-B-Q to have as your first meal after surgery.” So I would always tell them, “Let’s keep it maybe some toast and crackers just to start out.”

Brandon Sterling:        

But again, being in Texas, you’d be surprised at… I will walk in and see this tray, it’s like a mini buffet of food. And I would warn them, “We want to encourage you to do some food intake. However, this is not the way to go with the cheeseburger and fries on post-op day one.” But what does happen, and it’s just part of the surgery, because remember with the creation of the diversion, there’s manipulation of the bowel. There’s actually a decrease of appetite. So a lot of patients would tell me initially after surgery, even on follow-up telephone calls after discharge, “I don’t have an appetite. I don’t have an appetite.” And that’s an absolute normal finding.

So that’s when, again, we would reinforce the protein shakes and just sip on those all throughout the day because essentially you will need some type of protein to help facilitate healing. So it’s just one of those things where I’ll go back to my picture of this drill sergeant here, is like, “It’s really important that you intake those calories, whether it be through liquid or the small frequent meals, but you must increase your protein intake and supplement if needed.”

Part 2: “How can caregivers help when their loved one needs bladder removal?”

Brandon Sterling:        

So, I will now segue into my research findings.

So the whole premise or the whole way that I came about to this study was I would take care of these patients post-surgery and then I would look in the research and I was like, “Huh. One of the cornerstones is missing from all of the literature out there regarding the enhanced recovery.” And that’s the perspective of the caregivers because ultimately nothing in the home works as far as care goes without the input of the caregiver. For example, if we tell you “you need to go to your prehabilitation appointment” or we’re teaching you about the nutrition shakes and you need to do this and do that, well, who’s going to do all that while you’re recovering from surgery? It’s going to be the caregiver.

So I was like, “Man, this is a great opportunity for me to explore these perspectives and then publish it and give the caregivers a voice in all of this.” And that’s what inspired me to do this study. And I’m very much an advocate for nursing research and especially nurse practitioner or advanced practice provider research because we have this unique perspective where we have a foot in the door with medicine, and then we also have a foot in the door with I would say basically the front lines in nursing. So it’s just one of those things where I was like, “Caregivers are so important, and for you to have a program that’s so structured and so regimented and follow up appointments and teachings and things, how can you be successful without the input of the caregivers?” So that is what led me to my research question, which is what is the experience of cystectomy caregivers in enhanced recovery programs?

So I ended up doing a qualitative study, and the way that I ended up getting connected with BCAN is through the chair of my department. He emailed Stephanie and then Stephanie emailed me back, and then I was provided a letter and then we moved forward. So with the qualitative study, I ended up doing a lot of Zoom and telephone interviews. And the reason why is I was doing all of this during the height of the pandemic, believe it or not. And then also my role is different, I was actually working in the ICU before I transitioned back into urology, so if you can imagine the amount of stress it was. But I thought about how the caregivers and the patients persevere through this time, I can do this too, as far as giving them a voice and help in doing this research study. So I work with BCAN and it’s physician affiliates to help and recruit for the study. So we recruited through Inspire, and then just sometimes it was just through word of mouth to get the word out on this study.

So as far as the themes go, the themes that I found throughout my study is the four major themes were partnership and feeling connected, elements of resilience, seeking and accepting knowledge, and transitional recovery thresholds.

Brandon Sterling:        

So partnership and feeling connected. So many of the caregivers had mentioned that, especially throughout the pandemic, they relied on different networks of support to help them throughout the process. And this could be friend and family support, church group support, even other caregivers and other patients that they would link up through either Facebook groups or BCANs’ Inspire program, and then also medical nursing support. So I will say it varied quite a bit throughout the nation depending on where you were located, because some had revealed we really needed that wound ostomy nurse locally because we’re in a rural community in Wyoming and there was no wound care ostomy professional within 100 miles of us, so we had to make do and make those two hour trips.

And then as far as the vigilance and devotion, man, the caregivers were just a steadfast and just supportive of their loved ones. I have a quote here where one of the caregivers said, “It’s a partnership and you and the patient need to bring forth your questions, your determination, your dedication, your belief that you are going to do well.” So a lot of the caregivers were like, “Well, no one really wanted to have surgery during the pandemic because there are limitation on visitation.” So everybody was scared. But then the next question was, “Well, what is the alternative? What do we do if we don’t have the surgery?” And nobody wanted to even consider the alternative, so they all move forward. So through the power of different social networks, whether it be virtual or in-person, many of the caregivers felt like they needed that strong support system, especially in the setting of the pandemic.

And as far as the next theme, the sub themes for the elements of resilience were the surgical necessity and urgency, fear of the unknown cancer perspective and resolve, and then COVID-19 obstacles and detached experiences. So I didn’t want to make one of the major themes, COVID-19, because it was just one aspect of the different elements of enhanced recovery or looking at the different experiences of the caregivers through enhanced recovery. But as far as the surgical and necessity and urgency, a lot of the patients or their caregivers were like, “Well, we were really impressed by the enhanced recovery program and everything that was brought to it. However, we did the initial resection or the TURBT on Tuesday, and we were back in the office on Friday, and then we were scheduled for surgery that next Wednesday.” And that’s how fast everything went.

So a lot of the caregivers were like, “Yes, the preoperative phase was great, and they had wonderful plans, however, everything just happened so quickly.” So that’s when they reinforced those resources, having the packets or having the BCAN website as a resource for them to go back. Because I don’t know how many out there have had this experience, but a lot of the patients tell me, “Before surgery, it’s just a blur. You just hear the diagnosis and then you know you kind of go blank.” And then the next thought is, “Well, how do we get this done? How do we get the surgery?” And then depending on the situation, some people were in surgery, their loved ones were in surgery that next week. And then of course there was a fear of the unknown. And I think, well, a lot of the caregivers expressed that they were relieved to have the surgery and relieved to hear that the margins were negative, but then it was that four to six wait for the final pathology to be reported to them along with this new thing they had to do at home with the different diversion care.

So there was a lot of fear, but the way that they would cope with it ties into the next sub-theme, which was cancer perspective and resolve. And many of them were like, “Yeah, we were scared. However, given the alternatives, we just didn’t want to think about that. So we just have to move forward and press on and depend on our resources and access our resources.” And as far as the COVID-19 obstacles and the attached experiences, a lot of those appointments were limited to maybe one person, and that could just be the patient. So the caregiver had to either FaceTime in or Zoom in to really get the full breadth of the information. And then unfortunately, just given the circumstances during the pandemic, a lot of them reported, “Well, I couldn’t even wait in a waiting room during my loved one surgery, so the surgeon called me while I was sitting in the parking lot on the phone with family members waiting for an update.”

So COVID-19 and the way that things were shut down, it was a horrible experience. A lot of the caregivers stated that it just added to their anxiety. And then the quote that I selected was exactly what I told you, “We found out on a Wednesday, saw the doctor on Friday, and then a week following that Monday we had the surgery.” So there are multiple factors that go into the caregiver experience before pre-surgery. And like I said, it just can depend on how expedited the process is or how long the process is. And then just you having to accept that cancer diagnosis. And then here you are at the surgery and then here’s this mountain of information that you have to digest in a short period of time. And then after surgery, it’s like you go home with this new baby and it’s like, “Well, what do we do now?” But again, the caregivers expressed it’s a partnership. They felt like it was teamwork and they did it together.

So one of the other major themes was seeking and accepting knowledge. So a lot of the caregivers detailed how they went on self-initiated education. Meaning they went to Dr. Google, they went to a BCAN website, they went to Facebook, and they reached out to any and everybody as a resource to gain knowledge prior to surgery. So they said that, “Yes, we did get the information from our outside resources, but we also got resources from our surgery team, or whether it be the wound ostomy nurse or it was the advanced practice provider. And then what I’ve learned is a lot of practices around the nation, they don’t have an advanced practice provider, so they receive a lot of their information from nurses as well.

And then finally, the diversion education. So a lot of the caregivers expressed even one of the biggest decisions they all had to make collectively was deciding on a urinary diversion. Now of course, that decision is made, it’s an individualized decision. Because they were like, “Yeah, my family member was very adamant about having a neobladder, but they have arthritis and just manipulating the different flushing and manipulating the different tools, it just wouldn’t work out.” So they ended up moving forward with an ileal conduit. So all of that education was factored into their decisions. And then ultimately it was, I coined it the home adventures. Where a lot of the things that they were taught, it was like, “Okay. Yes, you taught us the book, but the reality at home was quite different.” I’ll never forget one caregiver had mentioned, “No one ever told us the benefit of silk pajamas.” And I was like, “Well, tell me more about the silk pajamas.”

And they went on to explain, “Well, with all the different tubes and things that you go home with, it’s the silk pajamas that make it easiest for everything to move around without getting caught in your clothing.” And I was like, “Wow, that’s actually a great thought. I never thought about that.” And here’s a quote from one of my caregivers, “We read lots of materials, of course, we talked to physicians, nurses, and they explained it. Of course, internet search, and we were just looking.” And that’s one thing I always get a little afraid of is that just looking part. Because with resources like BCAN, it’s like patients shouldn’t have to go down the rabbit hole of the internet. BCAN has a one-stop shop of all of the resources that you would need to be successful before and after surgery. So if there are any caregivers on the line, just check out their resources, they’re top-notch, I promise.

And then the final theme that I discovered through my research was transitional recovery thresholds. So a lot of the caregivers attributed the success or the health status of their loved ones after surgery to how fit they were before surgery. Many caregivers explained, “I feel like they did so well, is because they worked out and they did everything they were supposed to do before surgery. They quit smoking, they started walking, they increased their activity as we were told during pre-hab. And because of that, I feel like they did better.” And then promoting independence. Now, this is very interesting because I have one caregiver who was like, they were very frank. They said, “Well, I enjoy being a caregiver, but what I really miss is going to dinner and I really miss going to lunch with my friends, so I’m really excited that my loved one is more independent because now I can get back to my regular life.”

Brandon Sterling:        

And many of the caregivers were very adamant about their loved ones learning how to do their stoma care because they were like, “Well, what if something happens to me or what happens if I can’t be there immediately to help them manage an accident with the bag or something?” So many of them, they wanted to foster independence for their loved ones. So I wouldn’t say it was tough love, but they were just instilling that trust in them that, yes, you can do this. You can do this. And as far as the urinary diverging discoveries, that’s what I was touching on about the silk pajamas. And then a lot of the caregivers would basically say they really explained how to manage the tube and the bag drainage, but they didn’t explain this certain bag. Because it’s not uncommon that patients are discharged with a bag with a window because of they have existing stents.

So typically what they do is they keep that bag on until the stents are pulled and then you just transition over to the more permanent bag. So a lot of the caregivers have mentioned, “So with that, we learned how to use the other bag and not this bag.” So again, a lot of them had expressed how they just made these small discoveries within the confines of their home, and that was little pearls that they will be willing to share with other caregivers. And I’m going to go ahead and promote that Inspire web forum again, because those little pearls are invaluable. And those are things that the surgery teams may not be privy to, whereas again, we didn’t go through the surgery, we never cared for a stoma at home. So those caregivers and patients who’ve gone through it, they can be a great resource to those who are just starting or those who are just embarking on that surgery journey.

And I pulled a quote from one of the caregivers, “Well, it makes me feel good that I know he’s doing well enough and feels good enough to where he can go and do these things for himself.” So essentially, many of the caregivers expressed in the postoperative phase, “The more independent that they are, the more that they feel they can do things on their own. I know that they’re getting better, that means they have to depend on me less and less.” But it’s not necessarily a bad thing. Again, they really wanted to foster that independence and make sure in the event that anything were to change, that they could manage their diversions on their own.

Brandon Sterling:        

And as far as the caregiver integration, just as a culmination of everything, caregivers again, are a cornerstone of enhanced recovery. They’re a cornerstone of bladder cancer care, period. You can explain everything to the patient, but again, if you have all of these expectations of what needs to be done in the home or this fancy postoperative care plan, none of that will be instituted without the aid of a caregiver. So they must be included in the surgery planning process, especially the diversion education. One of the main tenets the caregivers mentioned, “It’s a team, it’s a teamwork.” So I would say to the providers out there, if you can’t teach both, you’re going to have to teach them again, make sure that caregiver is there. It’s not uncommon during the pandemic, a lot of the caregivers would make recordings or videos of their own just to go back home and share with their caregivers.

But luckily, we are beyond that. But still, the fact still stands that you must include those caregivers in any type of education, in any type of home program, anything. You can’t do one without the other. You must have caregiver involvement. And then of course, the recovery milestones are a positive indicator of recovery. Man, when I had a couple caregivers, they were like, “Oh, man, just the fact that they ate a whole meal, I knew they were getting better.” Or, “The fact that they could make it to the mailbox and back without getting out of breath, that just made my day because that was just an indicator that they’re getting better.” Or as I like to coin it, they’re learning their new normal. So once things get settled, caregivers just express such a great amount of relief that things were becoming normal.

And then the time and experience reduced anxiety, meaning the more that they got better at changing the, or excuse me, during the diversion care, changing the ostomies, the better they got at it, the less they had anxiety. Again, once they started to see their loved one getting back to normal or getting close to their new normal, it started to reduce anxiety. And one thing that I always would tell patients and even tell my caregivers in the hospital is like, “You are the first line of defense in the home for your loved one.” Meaning that if a patient doesn’t pass the eye test, that is a great time for you to reach out to the surgery team. And the eye test could simply be, “They don’t look well today.”

Now, as a caregiver, we don’t expect you to immediately give a medical diagnosis, “Oh, I think they have a UTI.” Or, “I think this is happening, or some type of infection.” It could just be, “They’re not looking good today.” Or, “I don’t feel like something is quite right.” That is the optimal time to reach out to the surgical teams and express your concerns and then let us know so we can order the appropriate diagnosis or even bring you into the clinic for an assessment. So caregivers in that eye test saves lives. It saves lives.

Brandon Sterling:        

And then on the horizon, and when I say on the horizon, these are just different aspects of care that I look forward to exploring with caregivers is the anticipatory guide. How do we really fine tune and hone in on those personalized care plans for patients in regard to enhanced recovery? Because you can’t cookie cut any of this. A lot of this, you must look at each patient and caregiver individually and come up with a care plan to anticipate their needs. Like I mentioned, what about those patients with poor mobility? What about those patients who may have arthritis and they can’t manipulate the ostomy or the neobladder tools like they can, do we need to get an occupational therapist consult or a physical therapist consult to come up with some neat hints, tips and tricks? Do you have a ride home? Do you have resources in the home?

So these are things that we can definitely hone in on to make a more personalized experience. And as far as the virtual communication methods, I think BCAN is already advocating for telehealth on a national level. And of course it varies from state to state. And in the state of Texas, it was not addressed this legislative session, but hopefully in the next one, they will address the whole virtual care debacle. Because with us being a major cancer center basically on the Gulf Coast, Texas is a large state, so to have those patients lose that ability to connect to their providers virtually, it would be a huge loss. Because a trip across Houston, Texas where I am can be at least two hours. So just imagine having to travel from a different city around Texas to Houston. It could be quite cumbersome, especially if you’re post-surgery or if you’re having some type of surgery complication.

And then assessing the roles in diversion care after surgery. I really think we can hone in more on the needs of caregivers in regard to diversion care to either increase their confidence. Because a lot of it was, “I just don’t feel confident. I just feel like this isn’t… I don’t think I’m doing it right.” So how do we increase that confidence? How do we measure that confidence? And then I think a great item to explore is what is your measure of success when it comes to diversion care in the home? And then with that definition, how do we apply that to other caregivers and patients across the board? So the opportunities are very rich out there for us to explore these different aspects of bladder cancer care, specifically focusing on surgery. And I’ve made it my personal mission to do the best that I can to conduct these research studies and disseminate that information widely.

But like I said, for those caregivers out there who are on the call, BCAN’s resources are invaluable. And not only invaluable, they’re free. So you just have to log onto their website and they will get you hooked up with those different resources, and then they can help you navigate the Inspire platform. That way you can have access to discuss all of these things with other caregivers throughout the nation and the world. So with all of that said, I wanted to thank you for listening to my presentation. Here are my references and then I’m going to stop sharing so I can answer your questions.

Part 3: “How can caregivers help when their loved one needs bladder removal?”

Patricia Rios:  

Thank you, Brandon, for a fabulous presentation. You really took us from understanding what the enhanced recovery programs are and the pre/post, during surgery, very comprehensive to also sharing information about your research. In fact, one of the questions in the chat is if we can share a link or reference to your study because it sounds really good. So we’ll try to get that from you and send it out. So thank you for sharing that with everybody, and also for helping us promote some of the resources we have available on our website as well as the Inspire platform. For those of you that are listening, if you haven’t had a chance, please check out the chat. In the chat, we have some of those links like the Inspire platform as well as other resources. And we’ll continue to put them in the chat throughout the remainder of this webinar.

I also want to encourage you if you have any questions for Brandon to go ahead and use the Q&A feature. And with that, I’m going to transition to some of the questions that we got from the audience, Brandon. One of them comes from this gentleman who says, “What specific questions, and of whom, should a prospective cystectomy patient ask in order to find a provider and team who will follow an enhanced recovery program?” Part one. And part two is, “Is there a widely accepted set of ERP guidelines and roadmaps and assessment criteria?”

Brandon Sterling:        

Yes, that is an excellent question. So in my experience, typically it’s the larger academic medical centers, they are the ones who follow enhanced recovery. So I want to say large academic medical centers, MD Anderson, Sloan, Dana-Farber, Mayo, they all tend to follow those guidelines. Now, if you want to ask your team specifically, I would ask them, “Hey, here we are about to do the surgery, is your focus on enhanced recovery? Do you know what enhanced recovery is?” And that could be a deciding factor in you having your surgery at a community hospital versus going to a larger academic medical center, because a lot of it is just resources. You have to have the resources to really implement the enhanced recovery. And then, oh, excuse me, from a provider standpoint, not only do you have to have the urology team on board, but you have to have the anesthesia team on board.

You have to have the patient care units on board, because it’s a whole movement. Because back in the day, the nurses would just give narcotics like it was candy. So when I first started in my role at MD Anderson, that was actually an issue where the nurses would just do what they’d always done. So it was more so of me having to reeducate the unit staff like, “Before you give that narcotic…” Well, after a while, we just removed it from the post-op order, so you didn’t even have access to it. But it was a lot of education, a lot of collaboration between all of the different disciplines.

And then in regard your question of if are there published guidelines? Yes. You can actually Google scholar enhanced recovery, radical cystectomy, and there are a plethora of articles that are available to you to really examine each of the elements. Now, I didn’t go into the minute details and drug classifications. I really did a broad overview, but I will say that those patients who have their surgery at a center who does enhanced recovery, that like I said, they will tend to have decreased hospital stay, they will have decreased narcotic use.

They tend to have decreased readmissions because they already have the resources and the communication platforms in place to talk to the teams, if needed. Because in my eye, in my purview, if we can get you into the clinic before you need a readmission, that’s where I would rather you be. Do we need to bring you in to give you a small infusion of saline to stabilize you and hydrate you before sending you to the emergency room? That’s the key. That’s the goal.

Patricia Rios:  

Thanks for answering that. And I want to transition to a topic you covered around empowerment of the patient. So this question came up, “How do you encourage patients to learn to care for their own stoma or bags? And is it generally better for the patient to do it themselves?” As you mentioned, many caregivers offered to help, but what happens if a bag needs change and the caregiver isn’t around?

Brandon Sterling:        

Yes. I actually had many caregivers in my study reference this. And they were like, “Well, it’s kind of on this timeline.” So once you’re at home that first few days and they’re acutely recovering from surgery, it’s like, “Oh, yes, I’m here. I can help.” And then they slowly transition to where it’s like, “Okay, we’ve now discovered the size of the stoma and this is the size of the stoma it’s going to be for a while. So here are the scissors, and now I want you to cut it and now I want you to do this task.” And a lot of them basically detailed how it was a transition period. And it got to the point where it’s like, “Well, it is time for a stoma change, so I’m going to watch you.”

So again, it all goes back to that teamwork and just having that unsaid understanding like, “Yes, I’m here to help you, however, you have to learn it on your own. That way you can be independent.” And the patients, they said kind of pushed back from time to time, but once they got that idea of, “Oh yes, maybe there will be a day you won’t be here with me.” Or, “I have to do distance travel.” Or, “I want to go biking.” Or, “I want to do an activity independent of you, so I do need to eventually learn it for myself.” So that’s actually an excellent question.

Patricia Rios:  

Thank you, Brandon, I also liked that you talked about rehabilitation as part of the enhanced recovery program. Could you talk a little bit more about that role throughout the different phases, post-surgery and what they should be looking for in terms of patient? And what if that’s not offered? What kinds of tips can you provide to the patient so they could take advantage of that service?

Brandon Sterling:        

Oh, that is a great question, and prehab… Okay. So the thing is, once you make all your appointments, and this is very true of MD Anderson, it’s almost like all your appointments have to align perfectly for you to be seen in all one day. And maybe that PM&R professional may not be available to you. We get a lot of patients who are out of town, so it then becomes… It’s like, “Well, we depend on you to do your own activity.” And I always would tell patients, “Just think simple.”

Again, we don’t expect you to go out and get a gym membership. We don’t expect you to go start CrossFit. And when it comes to increasing activity, you can start by walking to your mailbox and back. Okay, you’ve met that milestone and you feel comfortable. Okay, well let’s do it twice. Okay. Well, now let’s go walk to the stop sign. So it’s all about your personal ability and safety. Okay, safety, safety, safety. There is no expectation for you to start doing box jumps or dead lifts, what I was doing when I injured myself. You have to use common sense and you have to do what’s safe.

And unfortunately, given again, the resources of that facility, you may not have access to do the prehab, but just keep it simple and just do things that are within your physical realm. No need to go above and beyond, or go crazy to injure yourself. And then you just continue that same program after surgery. And one thing that I would really like to highlight and I want to mention is sometimes it’s the small ones, just you drinking that shake, “I couldn’t tolerate a full shake yesterday, but I drunk a full one today.” Or like I said, you being able to walk down at the end of the driveway, “I couldn’t do that before because I was too uncomfortable.” So accept the small wins. And then like I said, just think smart, think safe, and do what you need to do to recover and make sure that you of course, consult with your team. Because again, we don’t expect you to go out running marathons pre-surgery, or post-surgery.

Patricia Rios:  

I love that. I love the celebrating those small wins and taking one day at a time. So our focus today is around caregivers, and I think those on the call are here because they have a loved one. But what about those individuals who are not as fortunate to have someone living with them or close to them? What other resources are there to set them up for equal health outcomes as those who have someone living at home with them?

Brandon Sterling:        

Oh, that is a great question and that is one of the biggest challenges we have in healthcare. Because sometimes it’s not that they can’t help, they just don’t have the time because they have to work. If I could wave my magic wand, I would advocate for all caregivers to be compensated some type of way. Because ultimately it’s a full-time job and it’s a full-time job you can’t leave because they live with you, in certain circumstances. But in the case that you are single or you don’t have support, that’s when it’s a great team, you need to voice that immediately to your surgery team. And then they can get a social worker in because depending on the benefits you have available to you, they can get someone to come to your home and check on you. Or you can have an in-person caregiver that can be provided through different resources and different volunteer organizations. So the big thing on that is just making sure you communicate that to your team. And that would always be one of my three questions. Do you have a home? Do you have a ride? And do you have food?

Patricia Rios:  

Thank you for covering that. I think that is sometimes things that we take for granted. I would say that on the BCAN website we have a list of support groups. And I want to encourage, if you haven’t had a chance to look at that, to browse and find a support group near you. We have our female focus support group once a month, and that information is there as well as Inspire. So those who are a little bit isolated, don’t feel that way. There is support and plenty of resources available to connect you to what’s available in your community. And we have run out of time, and with that, I have one last question for you, Brandon, to close us off. Are there any thoughts, last comments that you want to share with our listeners as we talk about this topic of enhanced recovery program and caregivers?

Brandon Sterling:        

I just would want to leave you with, if you can inquire about the existence of enhanced recovery program. Because remember, many teams aren’t explicitly calling it enhanced recovery, they’re calling it my outstanding surgical journey. But you can still inquire about the elements just to say, “Hey, I heard about this enhanced recovery, are you doing it?” And then when you look at it at a granular level, they’ll be like, “Yes, we’re doing this, but we don’t actually call it that.” And then as far as the caregivers, I just wanted to say be encouraged because you are one of the pillars of the care provider team. And as I was saying about the eye test, you are the first line of defense to keep your loved ones safe in the home environment. Because as much as I love my patients, and as much as I love taking care of them, I can’t be at your house, so we depend on the caregivers.

And just if your gut is telling you something isn’t right, you should definitely reach out to the team and advocate and then leave it up to us to take it from there. Because one thing that I’ve always leaned on in my experience as being a nurse for it’s like 16 years this year, is I would always ask the caregivers, “Well, how did they look to you? How do you think they’re doing?” And that was always a cornerstone because sometimes they’d be like, “Oh, they’re looking great.” And it would be my first time meeting the patient, I’m like, “Oh, well if this looks great to you, then okay, we look great.” Or they would be like, “They don’t look so good.” And I was like, “Hm, I was thinking the same thing, so let me go in my tool bag to see what we can do to figure out what’s really going on.” So just be encouraged, know that you’re not alone, and again, use those BCAN resources as you go through the surgical journey with your loved one.

Patricia Rios:  

And that is an excellent way to end today’s webinar. Brandon, thank you so much. We’re so fortunate to have you with us today. Thank you for everything that you’re doing for our bladder cancer community. Thank you again for joining us, and we’ll see you next time.