Helen Bauer is one of those people who makes connections and disseminates information in every way she can think of! With 500+ podcast episodes of The Heart of Hospice, and 15+ years as a hospice nurse, Helen is dedicated to helping people answer the questions they have about the end of life – especially when it comes to hospice care. What kind of choices do I have at this stage? What are my options? How can I get the ‘big picture’ to help me orient myself to this new landscape? How can I talk to someone impartial? Who has fast answers to my questions for myself or my loved one?

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Transcript:

Diane Hullet: Hi, I’m Diane Hullet and welcome to the Best Life, Best Death podcast. I’m here today with Helen Bower of the Heart of Hospice. Hi, Helen. 

Helen Bauer: Hi, Diane. So good to be with you. 

Diane Hullet: I’m excited to have this conversation today. I think that Helen and her team have got so many good things going on. The Heart of Hospice podcast, if you’re not familiar with it, they just hit their 500th Episode and episode number 500 was with none other than Barbara Carnes.

And so they’re just, you know, going like crazy, putting out information and resources and sharing good tips with people about how to have conversations about end of life. Tell us, tell us a little about yourself, Helen, just orient us. How did you get into this work and what is the heart of 

Helen Bauer: hospice? I got into this work about 15 years ago.

I had already been a nurse. Practicing for 15 years in community based care, a little bit of hospital nursing, but all the rest of it community based care, and it was one of those accidental jumps. that became this wonderful thing that I never knew was out there. I needed a full time job after being a stay at home mom working part time and my kids were grown and didn’t need me like that anymore.

So I had a friend that said, Hey, I work with this fantastic team. You should just come and, and apply for this opening here. She said, we do hospice. And I thought nursing is nursing, right? It’s all nursing. And of course it’s not. It’s absolutely not. So I fell in love with it. I absolutely did. And I’ve been working in it for the entire 15 years in different capacities, bedside, nursing, directing, consulting, regulatory and compliance work, which is not quite as fun. 

And then of course, the podcast for the last eight seasons. 

Diane Hullet: Amazing. Amazing. And your podcast is weekly, yeah? Yes. Yeah. So you can catch that anywhere you like to listen to your podcasts. And it’s, it’s really just a wonderful listen. Today we wanted to kind of focus on a new service that you’re offering.

And so let’s, you know, describe that for people. This new service is called Hospice Navigation Services. And I think it fills a really unique niche in the U S. 

Helen Bauer: I think so too. That’s my hope anyway. The podcast started off with The reasoning being, I got so tired of hearing people say, I wish we had known about this sooner.

So Hospice Navigation Services is a service that’s built to give them those, that information ahead of time. When they need it, or even urgently, because sometimes things happen. That you have to to get information right away, but it’s designed to be convenient. It’s designed to be affordable. It is an information and educational and supportive service for anybody who needs end of life care.

Anybody who just needs information about end of life care, either for themselves or someone that they love. 

Diane Hullet: I think it’s so powerful in part because it’s so isolating and people are doing so much of this kind of in isolation or, or I want to say like in a fragmented way, like they don’t know how to get the big picture.

They don’t know how to say, what are my options? What, what kind of choices do I have at this stage with? I’m going to say it’s like with my loved one, right? So my loved one has turned a corner in some way and I’m concerned and I want information about what are the best medical choices. Perhaps the person is having medical situations that keep sending them to the ER or perhaps the regular physician has made some comments about there’s nothing more they can do.

And, and you, you’re isolated and you want some answers and some information, but maybe. Making phone calls to your local hospice doesn’t quite give you the big picture that you’re trying to get. And so I think hospice navigation services, just with a simple phone call, is that possibility of help me orient myself to this new landscape.

Because that’s what I’ve been, that’s what I’ve been struck by recently. It’s almost like you step into this new landscape that you haven’t traveled in before, and you don’t quite know the language and the customs and the, The the lingo of the locals and it is something you have to learn and kind of navigate, which is why navigate is such a great word.

And so to have someone there on the other end of the phone who can say, this is what it sounds like. Here’s what I think you might want to do next. Here’s the big picture of how it all ties together is such a valuable resource. 

Helen Bauer: I think so too. I think a lot of times people who want information are hesitant to ask their medical provider, their physician and which actually I think is a good thing because a lot of times doctors are not familiar enough with hospice care.

Not all doctors know all the ins and outs, what the qualifications are, and what the services are. Also, I think people are hesitant to say, we may be interested in hospice because they’re concerned that the care that they’re getting currently might change. Well, if you’re interested in hospice, then we’re not going to pursue treatment anymore.

You know, if you don’t think it’s a goal for you, then we’re not going to pursue it for you. We’re not going to push the treatment. And they’re worried that their medical team will give up. So they want to talk to somebody impartial. And I think that’s one of the really great things about the navigation services is I am not a hospice agency.

I am not selling you patient care. I’m selling information that can help you get a better experience. Out of end of life care. 

Diane Hullet: I think that really sums it up so well, because again, if you call your local hospice, you’re going to get certain information, but is that the information you need? Or are they trying to say?

Yes, we’re the best in your area. Come to us when really you just want an overview of what it is. I think, you know, I think it’s so fascinating that there’s still so much misconception about what hospice is and what it isn’t. And I think that’s partly because hospice is shifting and changing and it depends on the region in which you live and the city in which you live and what’s available.

So I don’t know, is it, is it possible to try to articulate some of those changes that have happened that you’ve seen in your time in years with hospice? 

Helen Bauer: In 15 years, I have seen for profit hospice grow drastically. Even during the pandemic, you know, when the economy was so chan was so different, was so changed, and so volatile, mergers and acquisitions for hospice agencies continued at a pretty high rate.

And that’s, that’s very, important even when it comes to patient care. Because there are studies that show that agencies that are not for profit provide more visits, more supplies, there’s a better satisfaction from the consumer. But It’s super important to remember that not all areas have access to not for profit hospice.

You were saying this a second ago, rural hospice is a big issue. We’re challenged to serve everybody that’s out there. So again, going back to the navigation services, that’s a piece of information that people would need to know. If, do you need to shop for a hospice agency? Here’s what you should look for.

And here’s how it might be affected. But I think those changes, the growth that hospice As an industry has had in the last few years, I think that’s one of the biggest changes that affects our patient care. 

Diane Hullet: Yeah, that makes total sense. And I think that’s just a trajectory that’s going to continue, don’t you?

When you look at the demographics of the baby boomers aging, I think we’re going to see more hospices open and almost like chains, franchises, in order to develop the services to meet the needs that are out there because of the numbers. 

Helen Bauer: Yeah, I think that’s absolutely true. There’s so many of us, this silver tsunami, and I say us, but I’m, I’m just one year behind.

I’m not actually a boomer, but I think like a boomer. My kids will tell you I’m a boomer. 

Diane Hullet: Same here. I’m exactly in the same boat. I’m not a boomer, but I’m 

Helen Bauer: kind of a boomer. Yeah, my philosophy is probably a boomer’s. When you look at the volume of people, and we’re supposed to be providing care for human beings, but we’re using a business and an industry, a model, algorithms, processes, to take care of human beings, it’s almost like apples and oranges.

Diane Hullet: Yeah, it’s really interesting. I was reading another little snippet in a book just yesterday. I think it was in the Sally Tilsdale book. And the description was that a program took some men and women, like 500 men and women, and separated them into two groups. And one group continued to receive their regular physician care.

And they were told that this was a high risk group. These were elder people. And the other group received geriatric care, specialized. Careful care for elders that was just a little bit more nuanced than the typical physician care. And what they found was that something like six months later, a year later, 10 percent of both groups had died.

But the group that received the geriatric specialized careful care were happier, more active, more physically active. And not depressed and not isolated the group that had received regular care had really gone downhill quickly and died in a much more distressed state and or were living in a more distressed state than the other group.

So then, as the author says, so what was learned from this study that was so crystal clear, the numbers were very clear on one which was better, because the geriatric care in part managed medicine differently. They got people off medicines they didn’t need, they took a more conservative approach, they were not aggressively treating, they were managing life so life was better.

So what was the conclusion? That department got axed from the university because they said it didn’t pay enough. So this, this format, this formula that we know makes a difference for people doesn’t make money. And so this kind of slow medicine approach doesn’t make money. And so it doesn’t fit into our typical model.

And I think, I think we’re going to have to see that turned on its head somehow with the silver tsunami. 

Helen Bauer: I think so, but so what I know about boomers is we’re information driven. We love our autonomy. I mean, that’s why we have so many people that are choosing to solo age, you know, and I like to think that the boomers are going to use their voice, collective voice to make a change.

I think so 

Diane Hullet: too, because I think they’re going to really want different models that make a difference. 

Helen Bauer: Yeah, I think so too. I mean, so I’m not a boomer. Like I said, I’m just one year behind, but I’m interested in human composting for myself. I don’t want to be embalmed. I don’t like the environmental impact even of cremation, which is actually the same.

The carbon footprint for cremation is the same as it is for embalming. I want something different. And I talked to my family about that. My kids think it’s gross, but my siblings and their spouses. You know, they think it’s interesting, and so they’re pursuing that for themselves, and we’re all in the same age group, approximately.

I 

Diane Hullet: remember learning that there was a book in the 1960s about cremation, that a lot of people read, and then subsequently, many years later, when they were dying, those are the people who began to choose cremation, and really, Turned our country towards more cremation. And I wonder if the same thing will be true of green burial and human composting, that we’re learning about it now, but the people who are liking and embracing it are 40, 50, 60.

So it’ll be in 20 years that it becomes the norm or 40 years, something like that. Right. I think these trends sometimes take time to build. 

Helen Bauer: Well, and when you talk about such deeply entrenched traditions and rituals, Funerals in a funeral home, death in a hospital, you know, the family completely removed from the way the body is processed afterwards.

And what a terrible way to refer to how your loved one’s body is taken care of to talk about it being processed. Wouldn’t it be amazing if all of those trends turned around? But it has to take years to undo that. We’re so deeply embedded in those things. 

Diane Hullet: Right. Right. This, especially, I mean, what, what you just said really is relevant to this hospice navigation services, this piece about, we assume the medical model that when we have a problem, we go to the hospital and then that at the end of life, that can mean you’re in the hospital and therefore that is where you are going to die.

And there’s a great quote by Katie Butler that I saw recently where she said, you know, People say they don’t want to die in the hospital or they. They don’t have the death that they want, but that’s because they don’t acknowledge that they’re going to die. And so there’s this discrepancy between talking about it intellectually, not quite taking it in and making plans, setting things in place, coming to terms with hospice, finding out about hospice before you’re at the end, end, end.

Helen Bauer: Advanced care plan conversations are so hard to have. I’m not judgmental about people that haven’t done them because, so full confession, my advanced care plan is not finished. I don’t have my documents done. I talk about it on my podcast incessantly. I own, you know, death decks, end of life decks, I own go wish cards, all of these different things.

But when I really intentionally started to talk to my children, my children are grown, I have two daughters, it became a very emotional event for me, and a little bit funny because I have one daughter, my older daughter’s a firefighter. And she’s like, Oh, I will never unplug you. We will prop you up on the couch, you know?

And then my other daughter, who’s much more soft hearted she’s a school teacher, so maybe she’s not that soft hearted. She’s pretty awesome. But she’s like, that’s never going to happen to you. We can’t talk about that. It’s too sad. And then I had two grandchildren. And now I have a third one on the way.

So when I began to think about my advanced care plans and what that would look like for the end of my life, it became a very emotionally heavy event. So to say, you just need to do your advanced care planning. Here are all these tools and resources. I don’t think that we should overlook the impact. I’m a perfectly healthy.

older middle aged person, but man, had no idea it would affect me or my family like that. 

Diane Hullet: Yeah. Yeah. I remember, I mean, I think my husband and I got ours really completed maybe 10 years ago, something like that, 15 years ago, and it’s dated at this point and we kind of need to go back through it. And I remember one of the things that was helpful to me was listening to him because he was very clear about a desire for pain management and a desire to not be machine kept alive.

And he was very clear if it won’t return me to a quality of life, I don’t want that. So his clarity was really interesting. I could kind of borrow from that and say, okay, maybe. Maybe I see where he’s going with this, because of course, our ICU and our modern medical is is so incredible. If you’ve been in a car accident, and you’re 40 years old, and it can keep you alive and keep you moving forward and restore you to a quality of life that’s real.

But if you’re of an advanced stage or an advanced disease process stage, then some of those advanced medical practices might not be really what you would choose if you thought about it ahead of time. But I think if you just live your way to that moment and then make a choice in crisis, often the choice is to be kept alive simply out of fear and having not thought it through except in this heat of a 

Helen Bauer: crisis.

Oh, I think so. And the navigation services can be helpful in situations like that, too. I don’t want this to sound like an infomercial, but I come back to these conversations. When you have guidance from an unbiased expert, if I can use that word about myself, somebody who’s very skilled and experienced in end of life care, sometimes those conversations need to happen in a very urgent way.

Mom’s had a massive stroke. Well, we haven’t had those conversations or she’s younger. So we haven’t had those conversations. And now we’ve got to have all the conversations right now because every single one of those decisions, every single one of those questions is coming at us. Makes my 

Diane Hullet: heart beat fast.

You know, you kind of go, 

Helen Bauer: Whoa, can you, can you imagine if you got a phone call today and they said, you have to make this decision? Absolutely. Right now, right now, this is where you are. No, no chronic illness, no trajectory that you can understand and you can see happening over years or months. But now this happened today.

You have to come here and we have to make these decisions. 

Diane Hullet: And here’s my first thought. My first thought is who’s on my team, right? Like I immediately think who’s on my team. Who can I bounce this off of? Who can I trust to help me think this through? And I think having a sense of that team ahead of time, whether that’s beloved partners or Grown children or dear friends or impartial experts, I think is really important 

Helen Bauer: to know.

I think that’s a good thing to keep in mind when you consider your medical team as well, because those ICU docs, those emergency room docs, we love ’em for what they do. If I’m in a car accident, that’s who I want. But if I have a chronic illness and my quality of life is gone, or there’s no hope of recovering it, then their mindset of aggressive care and healing and recovery is not necessarily the appropriate one in that situation.

But I think when we get put into hospitals, and long term acute care facilities. That’s the work that they do. We as advocates for a beloved or for ourselves have to be able to say this is not a good fit. And I think that’s very hard to do. I think it’s very hard to do. My mother’s generation, she’s 91.

The doctor was the god. The doctor told you what to do and you did it. He said, here’s a pill, you take it. Here’s a treatment, you have to have it. And even to this day, she’ll tell you, oh, the doctor said I have to do this. I’m like, no, you don’t. And she doesn’t understand that. And I tell her, you have a choice.

You are the coach. The doctor is just the quarterback on the team. That’s me. Oh, good 

Diane Hullet: metaphor. Good metaphor. Throw in a sports metaphor. 

Helen Bauer: That’s all I know about sports. That’s as far as it goes. That’s it. The quarterback. I think that’s true though. The patient should be the one that calls the shots. 

Diane Hullet: Yes.

Yes. Yeah. So if someone wants to access Hospice Navigation Services, like what are the layers? How do you do that? Is it an 800 number? Do you make an 

Helen Bauer: appointment? It’s super easy. They can go to my website, theheartofhospice. com. There’s a page there for the Hospice Navigation Services. I offer a free 30 minute complimentary call. 

I ask that people fill out a quick questionnaire so that. I come to the call, the navigation session with information about their situation so that we don’t waste the 30 minutes you know, just getting demographic and basic information so that we can have a conversation about stuff. I also offer a 60 minute session that’s 95.

And that’s a little bit longer and you can have more people in either one of these calls can be either phone or video, you know, just like we’re having now on a zoom call or a team’s call, whatever is convenient for people, but that way you can have more people in. They’re getting the same information.

You can have sort of a family conference. help people to do some advanced care planning, troubleshoot an existing or an occurring hospice experience because sometimes hospice doesn’t get it right. Sometimes hospice folks make mistakes or it feels like a bad fit. So the, the one hour session is a great time to troubleshoot and ask questions about, Transferring or the kind of care that you’re receiving.

I also offer a concierge level for the navigation services, which is an hourly paid service fee for service where I will do anything from consulting conferencing via phone. via video or all the way across to researching agencies for someone for a client and boots on the ground interviewing and having a look at facilities if that’s what’s needed.

Diane Hullet: So interesting, I think that’s a fantastic, that third level really is a fantastic kind of Gatherer of information level that I think could be really helpful. So I love that that that’s even a possibility that you could make phone calls. You could ask questions and you know what questions to ask.

There’s a level of let me set the expert loose on these four hospices in my city and figure out what the differences are. Because when I. Talk to them. I don’t even understand why they’re different or how their services differ. I think it’s interesting that we still, many people still have this idea that hospice is 24 7 care.

Can you talk a little bit about that? 

Helen Bauer: Man, I wish hospice were 24 7 care. So, the first thing hospice patients and families used to say to me was, when, when do you put somebody at the house? Especially during a death. Will there be somebody here with me all the time? And the answer to that is no. The way we run hospice agencies right now, we do not function to stay in the home for extended periods of time.

That’s just a fact. We are not staffed to do that with the short staffing and the staffing shortages in the US. We couldn’t possibly do that if we were able to, but people always have access to talk to a hospice nurse. 24 7. And maybe that’s where some of the confusion comes in because we do say we’re available 24 7.

And yes, we can make a visit. But as far as caregiving and being at the bedside 24 7, that is not part of what hospice does not hospice agencies. 

Diane Hullet: Was it at some time? 

Helen Bauer: I think maybe when it started way back when, and that’s way before my time in hospice, you know, that’s, that’s the, the Barbara Karnes of the world, because it was all staffed by volunteers back then.

And I think hospice care was provided very differently. But wouldn’t that be a wonderful thing? So one of the things I noticed when I have a navigation services session with someone is they usually have two issues. two areas where they have challenges. One is the medical care. Do we need to elect hospice?

Is this the right time? Is hospice a good fit? What’s the disease trajectory look like? And, and what is hospice care in general? And then on the flip side, they have a caregiving issue. Mom’s been in a rehab facility for eight weeks and she wants to go home to die, except she lives by herself and her two children live five hours away.

And so you’re looking at a caregiving problem. Hospice can help with the medical side of things. That’s exactly what we do, but we cannot be replacement caregivers. Hospice never takes the place of family. That’s a 

Diane Hullet: big piece. You just said a mouthful. And I think that kind of scenario that you laid out is common with families living all over the country, all over the world.

And then if people really with a strong desire to be at home, if they want to be at home and how to make that work. And then it becomes, of course, an economic issue, right? Can you afford help? Can you find help? These situations are so individual. That’s what I’m always struck by. Every death has Similarities, but the, but the trajectory and the what’s possible in the who lives nearby and what is the timeframe is all so individual.

So having someone to help navigate that and see it just seems so useful to me. Well, 

Helen Bauer: I, I hope so. I’ve been on the receiving end as a caregiver for hospice, and so having a lived experience lets me know what people need, in addition to caring for people through the last 15 years. I think that in the modern world, you know, children don’t live on the family farm.

You don’t have everybody around you. We’re mobile. We’re mobile these days. And we get so far away from each other and then all of a sudden we realize maybe this has been happening for the last six, seven, eight years that the loved ones declined. And yet all of a sudden we realize the caregiving situation has to change.

Diane Hullet: And that realization really has to happen on multiple levels, right? It has to happen for the person who’s maybe living alone and aging and maybe not safe in their home. And it has to happen for the children who live far away. And how do you make sense of that? 

Helen Bauer: Yeah. And it’s hard to see for on both sides, I think, because we are so distanced.

It’s hard for us to stay connected in. That’s one of the reasons video chatting is so great. One of the reasons FaceTime looks so good because is mom bathed? Is her hair done? Is she dressed? You know, when I call her at, at noon, she tells me she hasn’t eaten anything since yesterday, things like that. But then for the person who’s experiencing the decline in health and function, You know, on a day to day basis, they probably have these coping mechanisms or habits that they’ve developed so that they can manage things, or they’ve left off things that they used to do.

But you can’t see the forest for the trees because it’s just the way I live my days out. 

Diane Hullet: Right? Yeah. And something about it’s hard to know. Oh, you know, this balance between autonomy and caretaking, right? It’s so, so delicate and so complicated. I mean, that’s a whole other conversation. I’m, I’m keenly aware that my parents are still alive and they’re in their eighties and they, you know, they don’t want kids to swoop in and tell them what to do.

And my brother is very committed to not doing that. You know, so it’s, it’s this balance of, of watching them and, and caring for them and being aware that they’re aging without sort of swooping and telling them what they have to do. They’re, they’re autonomous people. They’ve, they’ve lived a long time.

They’ve got a lot of wisdom and they, you know. know what they need. However, my parents are also kind of, I think, exceptional in that they’re willing to have help. They’re willing to have people help them. They’re willing to, you know, build their little village, so to speak, of friends and people who can give them support when they need it.

And they know how to ask for help. And I think a lot of people of that generation don’t, and they don’t want to. They’re sort of fiercely autonomous and they’re pissed about it. So we all have so much to learn in this aging game. 

Helen Bauer: Yeah, my mom is the same. My mom is the one that she’s going to be autonomous and and she’s going to get pissed if we interfere.

Yeah, I have two siblings and my mom now has dementia. We have realized and her memory has changed drastically over the last year or so. And she’s her biggest issue is problem solving and logical thinking. Which is a horrifying thing to watch, because my mother is a very intelligent, well educated, well read person.

So this is a huge chunk of her identity. And she’s also lived independently since I was, I don’t know, 18 or 20. Which was a long time ago. So for us to quote unquote interfere, trying to help her, she’s, she’s not stupid. Yeah. Yeah. Yeah. She’s like, you don’t need to be talking about me. 

Diane Hullet: Yeah. So I think the thing is, if you’re older and you’re listening, then the question becomes, so how do you set up your situation so that it goes the way you’d like it to, right.

And, and so that you’re not. Taken over by some annoying out of state children who come swooping in. 

Helen Bauer: Exactly. But that’s where the advanced care planning comes in because estate planning, all of that, you know, planning for where you will live and live out the end of your life, because not every living situation when you’re younger is going to be appropriate when you’re getting closer to the end of your life.

And that includes Locale includes safety issues, you know, mobility, all of those things, but that, yeah, that should all be part of an advanced care plan. 

Diane Hullet: Well, Helen, we’re just diving in here at the end of our time to whole other topics. That’s what we love to do. Let’s just go back to telling people again how they can find out about hospice navigation services.

They can go to the heart of hospice website. The heart of hospice. com and there they’ll find a page for hospice navigation services and give you a ring or set up an appointment. And I think there’s a lot to be gained by pulling on the experts to help us when we need a village to make decisions. 

Helen Bauer: I think so too.

Thank you so much. Just thrilled to be able to do this and looking forward to connecting with clients to help them out. 

Diane Hullet: Awesome. Well, I’m just thrilled to be able to share another cool resource that I think is made possible by things like Zoom and FaceTime and phones. And right, like the fact that this is even possible is, is really, really neat.

So you don’t have to find somebody in your area. You can just reach out. Work with people who are all over the country who can bring this level of expertise to help when decisions need to be made, whether it’s in advance or in crisis. So I thank you again, Helen, for your time, and as always, you can find out more about the work I do at Best Life.

Best death.com. Thanks for listening.