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Summary
In this episode of CareLab, hosts Emilia Bourland and Brandy Archie interview Helen Bauer, a nurse specializing in hospice and end-of-life care. Helen shares her extensive experience and insights into hospice care, addressing common misconceptions and emphasizing the importance of early involvement and personalized care plans. She also highlights the benefits of hospice services and the flexibility patients have in choosing the type of care they receive.
Key Takeaways
- Misconceptions about Hospice: Many people mistakenly believe that choosing hospice care means giving up control or hastening death.
- Patient Rights: Hospice patients retain their rights and can make decisions about their care, including opting in and out of services as needed.
- Benefits of Early Hospice Care: Early enrollment in hospice care allows patients to fully benefit from the range of supportive services offered.
- Individualized Care Plans: Hospice care is tailored to the individual needs of each patient, allowing for adjustments in services as the patient's condition changes.
- Common Aha Moments: Patients and families often wish they had known about and accessed hospice services sooner.
Transcript
Emilia Bourland, OTR, ECHM, CFPS: Welcome to Care Lab.
Brandy Archie, OTD, OTR/L, CLIPP: It's Care Lab Day, I'm so excited!
Emilia Bourland, OTR, ECHM, CFPS: Always excited for Care Lab Day. We need a new, we need a new adjective, adverb, adjective. No, verb, straight up verb. Right? Excited? I know am is the verb there. Someone out there can probably help me with this. I apologize. Okay. All right. Okay. I'm, I am super jazzed today because we have a really, really
Brandy Archie, OTD, OTR/L, CLIPP: Don't ask about English, I don't know anything. Yes.
Brandy Archie, OTD, OTR/L, CLIPP: I'm still going to be excited about CureLab Day.
Emilia Bourland, OTR, ECHM, CFPS: Awesome guest as you know Brandy. So we have Helen Bauer here. Helen Bauer has been a nurse for over 30 years, which means she's seen everything. And she specializes in huh?
Brandy Archie, OTD, OTR/L, CLIPP: And also that she started when she was five. And also that she started when she was five.
Emilia Bourland, OTR, ECHM, CFPS: Yeah, also because she looks insanely young. There's no... Yeah, we'll have to get into that a little bit, what your skincare secrets are and whatnot. But Helen, I do want to get through this intro because it's really good. Her bio is very impressive. So Helen's been specializing in hospice and end -of -life care since 2009. She's a certified hospice and palliative registered nurse with experience in patient care, nursing management, quality and compliance.
Brandy Archie, OTD, OTR/L, CLIPP: Exactly.
Helen Bauer: Man.
Emilia Bourland, OTR, ECHM, CFPS: And her passion for advocacy at the end of life can be heard on the Heart of Hospice podcast, which you should definitely check out just as soon as you finish listening to this episode of Care Lab. And she talks all about hospice philosophy, how to get the most from your hospice experience, and advanced care planning. Over the years, Helen has helped hundreds of families and hospice professionals navigate their hospice journeys by providing support, education, and encourage.
Encouragement and Helen thank you so much for being here with us today on Care Lab.
Helen Bauer: Well, thank you for the invite. I feel a lot of pressure to live up to the bio. I feel like maybe that was a little bit inaccurate, right? Made me sound a lot better than I am.
Emilia Bourland, OTR, ECHM, CFPS: I mean, listen, it's your fault for having all of that experience if you feel pressure from it. It's...
Helen Bauer: With age comes experience. What can I tell you?
Emilia Bourland, OTR, ECHM, CFPS: Yeah, yeah, no, I have no doubt that you're going to live up to it and more because you are one, totally amazing at what you do, incredibly knowledgeable, and also Heart of Hospice podcast is huge and amazing.
Helen Bauer: My gosh, over 500 episodes now. Yeah.
Emilia Bourland, OTR, ECHM, CFPS: What?
Brandy Archie, OTD, OTR/L, CLIPP: How long ago did you start it?
Helen Bauer: We start season nine in August of 2024. So in just a few weeks, actually, we're finishing season eight. So we've been doing this for a while.
Brandy Archie, OTD, OTR/L, CLIPP: Mm -hmm. Yeah.
Emilia Bourland, OTR, ECHM, CFPS: How do you denote, this is a dumb podcast question probably, but how do you denote the difference between seasons? Because I feel like it just kind of keeps rolling. Do you have defined times when you're recording and you take a break between seasons?
Helen Bauer: No, we actually record year round, which is a little grueling. We try to take December off, you know, just to give a few weeks during the holiday season, but we started August 1st was season one and we go through, you know, it's just a regular calendar year from August to August.
Emilia Bourland, OTR, ECHM, CFPS: Mm -hmm.
Emilia Bourland, OTR, ECHM, CFPS: Mm -hmm.
Brandy Archie, OTD, OTR/L, CLIPP: Get it.
Helen Bauer: And it's, yeah, it's a lot of work. People, at least the way we do it, the way I do it, it's a lot of work.
Brandy Archie, OTD, OTR/L, CLIPP: What made you decide that you wanted to start a podcast? What is it that you wanted to be sure to share in this format?
Helen Bauer: I had a friend who also works in end of life care and he said, you know, there aren't any good podcasts out there about end of life care. And what we know about people that are working in end of life care or need information about end of life care is they're tired. They don't necessarily have a lot of money to throw at getting resources.
They need to be able to access the resource 24 seven. They need to be able to listen to it in pieces and then come back later on and pick up another piece. And there would be, they should be able to hear resources from all these different experts. And a podcast is perfect for that because you can listen to it so many different places. It doesn't cost anything. And you can listen to it while you drive from patient to patient or while you're doing 10 minutes worth of laundry.
Brandy Archie, OTD, OTR/L, CLIPP: Mm.
Emilia Bourland, OTR, ECHM, CFPS: Yeah, that makes sense.
Helen Bauer: So that was, yeah, that was what our thinking was.
Emilia Bourland, OTR, ECHM, CFPS: I think that's actually my favorite thing about podcasts in general is I can consume them in pretty much any place doing whatever I'm doing. Like I can be on a run and listen to a podcast. I can be doing the laundry and listen to a podcast. I can be driving to appointments or to work or, you know, carpooling my kids around, whatever. And it's just a great way to either be entertained or get a lot of good information, especially when the podcast is hosted by someone. You know, if you're looking for education.
Finding a podcast that is hosted by someone who really knows what they're talking about and is kind of an insider. It's like one of the best formats you can get to get like just really good real world stuff. And so again, I'll just plug one more time. Guys, you have to check out Heart of Hospice if you haven't yet. It's really, really good info. We, oddly enough, we're not supposed to just be talking about podcasts here today though. I have. So.
I do have a fun question to ask you before we do start to talk about hospice. And I know we wanted to dive into some kind of myths about hospice today. We're gonna get into that. But first I have a fun question for you both. Are you ready for it?
Helen Bauer: Probably not.
Brandy Archie, OTD, OTR/L, CLIPP: Ready as we'll ever be.
Emilia Bourland, OTR, ECHM, CFPS: Okay, what is one thing that you have done lately, like you personally have done that you always tell your patients or clients not to do? And you know there's something stupid that you've done that you tell other people not to do. Maybe that's just me, but you know what I'm talking about.
Brandy Archie, OTD, OTR/L, CLIPP: That's a hard question, I think. Helen, you got to answer. good.
Helen Bauer: Yeah, I do. That was an easy question. I mean, I'm
Emilia Bourland, OTR, ECHM, CFPS: God, I'm so glad I'm not... And now I'm so glad I'm not the only one. I was like, I'm the only one doing stupid stuff I tell people not to do.
Helen Bauer: Nurses are notorious for this because it's always do as I say, not as I do. We are terrible role models. So I'll go ahead and true confess, I have chronic hypertension and I don't monitor my blood pressure. And I nag patients all the time to do it.
Emilia Bourland, OTR, ECHM, CFPS: Oh, no!
Helen Bauer: I know, I know.
Brandy Archie, OTD, OTR/L, CLIPP: Oh, that's a good one. That's a good one.
Emilia Bourland, OTR, ECHM, CFPS: Brandy, are you as bad as Helen or worse?
Brandy Archie, OTD, OTR/L, CLIPP: I don't know if this is better or worse, but I'm a fall prevention expert and I'm also clumsy. And sometimes I will trip and fall over nothing and be like, this is exactly what I tell people not to do. I also have almost none of the things that I recommend people do to make sure their house is safe. Like I don't have any grab bars, I don't have any tub benches or any of that stuff. So.
Emilia Bourland, OTR, ECHM, CFPS: It kind of doesn't make sense for me to ask you then Brandy. I'm not coming over to your house to get any ideas.
Brandy Archie, OTD, OTR/L, CLIPP: Exactly, you should come to my house for what not to do. But that's the thing. But that is why people should listen because I know exactly what to tell you not to do.
Emilia Bourland, OTR, ECHM, CFPS: That's hilarious. I'm going to go with it's not like a super safety related thing. This is like probably really dumb. But I am a huge like skin care advocate for my clients. I'm like, you got to wear sunscreen, especially in the summer in Texas, you have to wear sunscreen every single day, face, neck, chest, hands, like don't miss a spot. And recently, my family went to the lake. And in our like, like day prep, we're packing, we're getting all the things, we got all the sunscreen, we got all the stuff, we're ready to go.
And I like ran out and completely forgot to put sunscreen on my face. And then we're on the lake all day long. And I got like the most gnarly sunburn I think I've had since I was a kid. And I was like, what is wrong with me? I was so bad.
Brandy Archie, OTD, OTR/L, CLIPP: Oh my gosh, you know better. That's so bad.
Emilia Bourland, OTR, ECHM, CFPS: Yeah, that's what I get for like, you know, running out, being the pack mule, getting everything ready. Yeah, you know, the mom life, getting all the things in the car and making sure everyone else has their sunscreen on and then I'm out there frying my face off. So, so dumb. So, so dumb. But yeah, there's lots of stuff that, I guess we all do it. I guess we all do it. Even when we know better. So, awesome.
Okay, so getting into the, the reason why we invited Helen on to the podcast today, is to, you know, talk a little bit about end of life care, talk a little bit about hospice. And I think one of the things that really, I know, bothers you and concerns you about hospice, Helen, is the fact that people have a lot of misconceptions about it. They kind of don't know what it is. They don't know when to access it.
They don't really know the value that they're going to get from it. So can you just start by telling us a little bit about like, what is hospice? What do people need to know about it?
Helen Bauer: Sure. So the simple definition is that hospice is care for people with a life expectancy of six months or less, if the disease follows a normal course. It's simple as that. And you can self -refer to hospice, which I think a lot of people don't know that you can do. And the benefit to hospice is it's a team that focuses on quality of life.
So you've got a doctor, a nurse, a social worker, a chaplain, a nursing assistant, and sometimes volunteers that will go in and help with patients who can't leave the house or need companionship, family support, that sort of thing. So the team is really focused on comfort, quality of life and support. I think one of the biggest myths about hospice is that if I choose hospice, I'm giving up. You know, that it's giving up on treatment or giving up on care. And it's actually just the opposite.
Hospice is very aggressive care. It's focused on symptom management and comfort and quality of life, but it's very aggressive, very proactive. And a lot of people just don't understand that. They don't understand that it's not about giving up. It's not about hastening death, because a lot of people think that hospice does that too. And that's really not what we do. Hospice is very patient centric.
Brandy Archie, OTD, OTR/L, CLIPP: Yeah.
Emilia Bourland, OTR, ECHM, CFPS: And I think that's, that's like so sad too, because you, I hear a lot, you know, oh, so and so has, you know, finally entered hospice care. And then a few days later, they passed. And I, and it's like, oh, well, hospice must be just like, you know, the moment before death. And the way I see it, and I'd love to hear your perspective on this too, Helen, is that people, they access hospice far too late. And so they can't get the benefit from it because they think, oh, it's like when I know I'm dying. But, but that's, that's not, that's not the case. Right?
Helen Bauer: You're absolutely right. People wait too late to come into hospice. And I think that's a direct result of how hospice is portrayed in movies and TV. You know, it's always a deathbed scene. And the reality is, I mean, people come into hospice sometimes within hours of dying. And so they can't really get a good benefit from that. And that, that's not really a good picture of what hospice is.
So we tell people, we do education all the time. When you sign up for hospice, it doesn't mean you're signing your death warrant, and it doesn't mean that you have to stay in hospice forever. You can discharge from hospice if you don't need it. If you have an improvement in your condition, and we have patients that that happens with, they get better, and they don't need hospice anymore, or they go into remission and they don't need hospice anymore.
And I think the worst thing is people just don't know that. And it's a benefit that's available 100% covered by Medicare, all the hospice agencies are for profit and nonprofit, but we're all providing the same benefit. And it's a shame that people don't know that they can access it when they're going to get the most benefit from it. And that means enrolling early enough to take advantage of that full team of support.
Emilia Bourland, OTR, ECHM, CFPS: Right, right. And, you know, what are some of the services that are provided under hospice that people might not even realize? Because I think when we think about healthcare in general, we think about, okay, doctors and nurses, right? But you mentioned a whole bunch of other things like chaplain, social worker. What are some of those other services that, that might be a little bit different than the way people experience traditional healthcare?
Helen Bauer: I think one of the things that's surprising to people is that when you go into hospice, the hospice team is available 24/7. So after hours, when your doctor's office is closed, you call the hospice team. You're going to get a nurse on call or the chaplain can talk with you after hours or weekends, holidays, that sort of thing. And the other thing is it's not only the patient that gets the benefit. The family also gets the benefit.
So it's caregivers that need assistance or education, that sort of thing. That's provided by the hospice team too. That's not, that's not something you get from regular healthcare.
Brandy Archie, OTD, OTR/L, CLIPP: Hmm. You know, it's so interesting that you mentioned that, because it does, it is a big difference, like that 24 hour thing. I think about how often we have patients call us and say, oh, well, what do we do now? And we're like, well, call your doctor, you know, or they, or, you know, they can't reach their doctor. And so they're asking us what to do because we're there, but like we're not a 24 hour, you know, type of service, you know?
Emilia Bourland, OTR, ECHM, CFPS: And they're kind of left with no answers, which is tough.
Helen Bauer: Right. Or they think their only option is to go to the ER or go to the hospital. And they don't want to do that. They don't want to be hospitalized again. And the reality is there's a team that can take care of that for them.
Emilia Bourland, OTR, ECHM, CFPS: Right, right. What do you, what are some of the reasons you think that people wait so long? Like, you know, I mentioned earlier that it is, it is so sad that so many people wait. Like, do you think it's the misconceptions? Do you think it's fear? Like what, what do you think is the main reason people don't access it when they, when they first need it?
Helen Bauer: So the number one reason that we hear people say when we interview families is I didn't know what hospice was. Nobody ever explained to me what hospice is. I didn't even know it was an option. And so that's an educational piece that's missing in the healthcare system. We as providers aren't doing a good job of making sure that patients and families are informed. And part of that I think is because of the misconceptions and the myths that people have about it.
People think that it's just going to hasten death or they're not going to get the care that they need. And some of it is the emotional piece of it. There's a lot of fear associated with end of life. People don't want to talk about it. They don't want to think about it. And the reality is when we start having those conversations, it demystifies it, it makes it not as fearful and it helps people understand, hey, this is really, this is support. This is something that's going to help me.
And I think the way we talk about it, that plays into it. Hospice is associated with death and dying. And the truth is, it's associated with care and living well at the end of life. And I think that messaging is something that we need to change as a society. And even the way we talk about end of life care and advanced care planning, that all ties into it.
Emilia Bourland, OTR, ECHM, CFPS: I was just thinking that exact thing, Helen, that this is, this sounds like kind of a whole cultural shift we need to have. And I think the shift, you know, I see it a little bit, right? It's sort of like little waves where there's a little bit more talk about it and a little bit more information coming out. And then it kind of goes away again. And I'm wondering, you know, do you see things kind of progressing as a society in the right direction? Or do you think we still have a long way to go before this conversation is more comfortable and more people know about it and can access it?
Helen Bauer: Oh, I think we have a long way to go. There has been a little progress. And the reason I can say that is because of the referrals that we're seeing, the hospice providers are seeing. I think there's a lot more awareness, especially since COVID, because that brought a lot of death and dying issues to the forefront of people's minds. But we're not where we should be, not at all. And so podcasts like this one, and like mine, that provide education, that's one way to do it.
I think having those conversations at the dinner table, as uncomfortable as they are, I think they make a difference.
Emilia Bourland, OTR, ECHM, CFPS: Right.
Helen Bauer: But we're not where we should be. I think more education, I think having more professionals in the field that are knowledgeable about end of life care. And that's a big one. A lot of times physicians don't know how to have those conversations. They don't know when to refer to hospice. And it's not their fault. You know, there's not a lot of education out there.
I mean, you guys know, how much education did you get in school about end of life care?
Brandy Archie, OTD, OTR/L, CLIPP: Oh, probably none.
Emilia Bourland, OTR, ECHM, CFPS: Like one lecture.
Helen Bauer: Yeah, right. So we need more professionals that are knowledgeable about it. And I think when we do that, then the conversations will start changing and people will start being more aware. But it's a long road, and we need a lot more education to make it happen.
Emilia Bourland, OTR, ECHM, CFPS: Helen, what do you see as some of the most common aha moments? You know, when people do access hospice and they start to see how it really works, what are some of the things that people most commonly say, like, oh, I wish I had known this sooner?
Helen Bauer: Oh, the number one thing is I wish I had known about this sooner. That's the thing we hear the most often. And then, you know, I think that just kind of underscores the fact that people don't know. They don't know what they don't know. And it makes it a little harder to talk about because they're not informed.
But another thing that I think is really interesting is a lot of people think that they're going to have to give up their own physician. And the truth is, your attending physician can follow you through hospice. They can remain your attending physician. You don't have to give up your doctor to come on to hospice care. And I think that's a big one because people have established relationships with their physicians. And it's important to them to keep that going.
And I think another one is people think that they're going to have to give up all their medications, all their treatments. And that's not necessarily true. We have patients that stay on chemotherapy. They may stay on dialysis. You know, it's just a matter of what are we trying to accomplish? And what's going to keep you comfortable and support your quality of life?
Emilia Bourland, OTR, ECHM, CFPS: So they don't even have to change. I mean, they don't even have to stop doing like regular aggressive treatment. They can continue with whatever treatment they want to.
Helen Bauer: Right. And it's, and that's the thing. I mean, it's, we call it aggressive treatment, but there's also the terminology aggressive symptom management, right? So if it's about keeping you comfortable, then it's about keeping you comfortable. And if that includes radiation therapy, chemotherapy, dialysis, it could be a lot of different things. So it's very patient specific.
And that again is another thing that I think people don't understand. It's, it's not a one size fits all sort of thing. It's about what's important to the patient, what their goals of care are, and how do we support that.
Emilia Bourland, OTR, ECHM, CFPS: Right. I mean, I think this whole conversation has just been fascinating. Like I've even learned some things about hospice care that I didn't know. So I mean, it's, it's just been amazing to get to have you on the podcast today. I want to wrap up by asking you a couple more fun questions, just because we can. And because the serious ones sometimes get me in my feels and I need to do something fun before I wrap the whole thing up.
Helen Bauer: I'm ready.
Emilia Bourland, OTR, ECHM, CFPS: You're ready. You're ready. Okay, Helen, this is a great one. If you were going to write a book, what would it be about? What would the title be? And can we write it together?
Helen Bauer: Oh my gosh. Okay. So this is funny because I've actually thought about this and a lot of people have said, you need to write a book. You need to write a book. And I would write a book about hospice myth busting. You know, people love all those myth busting TV shows, you know, where they debunk all these crazy things, urban legends and stuff.
I would write a book about hospice myth busting. And I don't have a title for it yet, but it would be something really catchy. You know, all those things you thought you knew about hospice, they're wrong. It would be something like that. And I'd love to write it with you guys. I mean, you've got a lot of experience with this too, and it would be a blast.
Emilia Bourland, OTR, ECHM, CFPS: That would be awesome. So we are down, we are going to, we're going to write that book. So I was going to say, when you think about myth busting, what are some of the, I know we've talked about a lot of the misconceptions today, but like, what's the one, what's the one big myth? The one thing that you want people to know that maybe they don't know or have a misconception about hospice. Just the biggest one.
Helen Bauer: Oh gosh, there's so many. It's really hard to pick one. I think, I think the biggest one is that hospice is about giving up. It's not about giving up. It's about living well at the end of life. And we see that over and over and over again with our patients that if they come on early enough, they really do get a good benefit from it.
They get that support from the team and it makes a difference in the way they live. They live longer. There are studies that show hospice patients live longer. It's about quality of life and it's not about giving up.
Emilia Bourland, OTR, ECHM, CFPS: So good. I love it. I love it. Brandy, any other last fun questions you want to throw at Helen before we wrap up?
Brandy Archie, OTD, OTR/L, CLIPP: Oh gosh. I don't know. All the things, you know, it's really funny because I had no idea that you were a podcaster. So I'm just like a little bit obsessed with that part of your story now. So I want to know how long it took you to get your groove with that. Like, do you feel like you were just like a natural from the beginning or did it take you a minute to like really be like, Oh yeah, I got this.
Helen Bauer: It definitely took me a minute. I think my very first episode that I recorded, I probably rerecorded the same three minutes about 10 times. And I still don't feel like I'm very good at it. You know, I'm just, I've learned that it's a little more natural if you just let it be conversational. And that's something that people enjoy more than reading from a script.
And you know, I, I still, even after all this time, I still get very self conscious when I listen to myself. So I just don't, I don't listen to myself.
Emilia Bourland, OTR, ECHM, CFPS: Helen, I feel like that is like the best place to leave this off. Don't listen to yourself. We're going to, that's what we're going to call the podcast, Don't Listen to Yourself. It's awesome. Thank you so much for joining us today. It has been an absolute pleasure to get to talk with you. I have learned a lot. I'm sure our listeners have learned a lot too.
Helen Bauer: Thank you so much for having me. It's been a blast.
Emilia Bourland, OTR, ECHM, CFPS: All right, everyone. Thanks for tuning in to another episode of the Seniors Flourish Podcast. We'll catch you next time.
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