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Summary
In this "Care Lab" episode, hosts Emilia Bourland and Brandy Archie welcome Helen Bauer from the "Heart of Hospice" podcast to discuss effective communication about hospice and palliative care. They explore the value of initiating end-of-life discussions early, how palliative care serves as a bridge to hospice, and strategies for introducing hospice as a compassionate choice rather than a last resort. Key takeaways from the conversation include practical advice for both healthcare providers and family members.
Key Takeaway
- Initiate Early: Starting end-of-life discussions well before a crisis can reduce emotional strain and allow for clear-headed planning.
- Distinguish Hospice and Palliative Care: Hospice includes palliative care, but palliative care can be given alongside curative treatments, offering comfort and symptom management without the stigma of “end of life.”
- Address Misconceptions: Many people see hospice as imminent death; educating on its focus on quality of life can shift this perception.
- Encourage Self-Advocacy: Patients and families are encouraged to be direct with providers about their preferences and seek a second opinion if they feel unheard.
- Be Compassionate: Introducing hospice requires empathy and respect; with these, there’s no “wrong” way to discuss it.
Transcript
Emilia Bourland
Hey, everyone. Welcome to Care Lab. We're so excited. We've got Helen Bauer back here with us on Care Lab today. Helen from Heart of Hospice, which if you haven't listened to the Heart of Hospice podcast, you should definitely listen to it just as soon as you are finished listening to this episode of Care Lab, of course. Helen's back here with us again today to talk about some more really important issues in hospice. But first,
Brandy Archie
Welcome to Care Lab.
Emilia Bourland
We've got to have a fun little icebreaker question. And I've got it today. Are you two ready?
Brandy Archie
I'm ready to go second, yes.
Emilia Bourland
Hahaha!
Helen Bauer, BSN RN CHPN
man, was that the bus driving over me? Okay. Yes. Thank you. Thank you. Okay. I'm, I'm, I'm ready.
Brandy Archie
Exactly. Just giving you a small bit of warning.
Emilia Bourland
Yes, that's a yes. This one is not too bad. so where, actually this is a total softball, where in the world do you absolutely have to go before you die? Where's one place that's on your bucket list you've got to make it there that you've never been before?
Helen Bauer, BSN RN CHPN
The Camino de Santiago, I can't even say it right. the Camino, it's like a spiritual pilgrimage. It's been around for centuries and you can walk it through Portugal and Spain and all these different areas from different directions. It's a hugely historic, well -traveled path and I really, really wanna do that.
Emilia Bourland
that's a good one.
Emilia Bourland
Yeah, my stepmom actually did that earlier this year. She did, yeah, she did, I think, 300 miles of it earlier this year. everyone that I know, well, I know two people who have done it, but like life -changing experiences for them. My sample.
Helen Bauer, BSN RN CHPN
Really?
Helen Bauer, BSN RN CHPN
Yeah.
Helen Bauer, BSN RN CHPN
Yes, yeah, I would love to be able to do that. Traditionally it ends in Spain. There's a basilica in a city there, pilgrims have been traveling. The Portuguese route through Portugal to Spain is a big one, but there are several different approaches you can take. I would just love to do that. And I want to do it while I'm in good health and good shape because it's pretty grueling.
Brandy Archie
Where is this?
Brandy Archie
Mmm.
Helen Bauer, BSN RN CHPN
Not like mountainous or anything, it's just the distance. It's an endurance thing.
Emilia Bourland
Yeah, that is very cool. That's a great one. Brandy.
Brandy Archie
I don't have anything as awesome as that, I don't think. Mine is, I have a whole bunch of places on my list that I need to go and I don't like to choose favorites. However, the place that was on my list the earliest in my life that I have yet to go to is Australia. And so I've never been and I really wanna go to Sydney and more places than that in Australia. And yeah, that's my place.
Emilia Bourland
Yeah, Australia is really high on my list too. And I've never, my husband's been there, but I've never been there. And I just feel like anytime you can get to another continent is pretty cool, right? I would have to say though, I absolutely am like drawn to this idea of going to Egypt someday. I just like really wanna see that part of the world. Of course I wanna see the pyramids. And there's just something that I wanna,
Brandy Archie
Mm -hmm. Yes.
Brandy Archie
Mm -hmm.
Emilia Bourland
go to lots of places in Africa actually, like Egypt just draws my imagination and I really, really wanna go there someday.
Helen Bauer, BSN RN CHPN
Very cool.
Brandy Archie
Mm -hmm. That's a good one.
Emilia Bourland
Alright guys, should we jump into this?
Brandy Archie
Bucket list before we die, hospice. That's our transition.
Emilia Bourland
Yes.
Helen Bauer, BSN RN CHPN
very good.
Emilia Bourland
Thoughtful.
Brandy Archie
So we've had a conversation before. And Helen, we really appreciate you on the podcast before and having us on your podcast. And I think the thing that Amelia and I were thinking about as a topic that we thought was really important, also because it happened in my own life, was how can we have the conversation with others about considering hospice? And this comes from a couple of different ways.
Helen Bauer, BSN RN CHPN
Mmm.
Brandy Archie
at the same time, a health care professional who might talk about it this way. And I'm also a daughter and a niece and a family member to people who might need to be on hospice. And so those two roles are very different. And even though I hold both of them, most people don't hold both of them, but they still have this like tinge of how do I bring this up because I love this person or because I really care about them getting the services that they need. In our last episode, we talked all about how beneficial it can be. And so like just, we need to know the words, give us the words.
Helen Bauer, BSN RN CHPN
gosh, I wish I had the right words that are cookie cutter that would fit every situation. I wish, I wish. But for healthcare providers that actually are family members that need to have those conversations, I think actually that puts us in sort of a good position. But the best piece of advice I could offer to anybody, whether you're a
Brandy Archie
That doesn't exist.
Helen Bauer, BSN RN CHPN
a healthcare worker or a family member that needs to talk to your person is have those conversations early.
bring it up way in advance because it's super emotionally charged when you're in the middle of a crisis. So really discussion of hospice should be part of your advanced care plan conversation, right? That should be in there somewhere. But an ambulance is a really bad place to have an advanced care plan conversation.
Emilia Bourland
Mm -hmm.
Emilia Bourland
Do you think that having that conversation early on, and maybe even like really it's a conversation we should have with people just talking about what our end of life care preferences are when we're not sick, when we're not ill, when we're not expecting it, right? But do you think that talking about that earlier on can help to decrease sometimes the fear that people have of when that specific word like hospice comes up? Because I know a lot of people are, they just don't even want to hear.
the word. It's too scary because it indicates that, you know, the end of life is approaching maybe sooner rather than later. So you think talking about it earlier kind of helps to de -stigmatize it a little bit?
Helen Bauer, BSN RN CHPN
I do, I do because when you have those conversations upstream, know, way, way distanced from a crisis or a serious diagnosis or, you know, bad healthcare news, you're taking out some of the additional emotion and grief and maybe depression and worry and anxiety and fatigue and all of these things that people are dealing with.
when a serious illness has gotten significant and you have a little space and a little mental bandwidth to be able to have a conversation and you know, anxiety heightens your fear responses. So if you have less anxiety, things are rocking along and you're just talking about what you might want at some point in your life or your illness, then isn't it so much easier to have a conversation? It just removes a lot of the
the weight of that word hospice. It also gives people some time to explore what hospice really is. When, you know, most people have a lot of misconceptions about what we do in hospice. You know, people are hanging halfway in, you know, one foot on the banana peel, one in the grave when they go on to hospice, which is not true. You don't have to be actively dying to be enrolled in hospice.
but a lot of people see it that way. So it really is, it's immediate death. When in reality, okay, so think of former president Jimmy Carter, right? He's become sort of the poster child for being on hospice for what, a year. It doesn't have to be that way. So if we have those conversations earlier on, I think we just process that information better. And it also gives us some time to
Emilia Bourland
Mm
Helen Bauer, BSN RN CHPN
explore it a little bit deeper. We don't have to say, okay, I don't have much time at all. My mother just had a significant stroke and I need the nuts and bolts, you know, the Cliff Notes versions right now so I can act. Well, you have a little, the luxury of time to be able to have conversations that are more relaxed, not as heated, not as emotional. I think there are a lot of benefits to moving those conversations upstream.
Brandy Archie
That is so simple when you say it, but so powerful. My parents and I have had advanced directive conversations. They wrote all their stuff out, and we talked about it. And we did not talk about hospice. We talked about everything around it. We talked about what do you want to happen at the end of your life, and what kind of care do you want? But we've never talked about, if this is the kind of thing that you want, then this also bodes well with choosing hospice at this point. And that just wasn't plugged in there.
and saying it in advance, or I should say like when you're planning, it makes so much sense because then when you bring it up, it's like, hey, remember, we talked about if these kinds of things are happening, you would want this kind of care and we can get that through hospice. How do you feel about me getting somebody to come over and talk about that? Then it's not like jump out all of a sudden, never thought about it before in my life and now I'm talking about now, so which means my life is over. It's like, okay, this is the next step.
that we're going to take at this point. It feels like all of these prefab advanced directive letters that we put in hospital folders and we try to get everybody to do should say, do you want to have hospice? And even though it's just like, you can just check a box, but at least it went across your eyeballs and you had to think about it for a second. It's not your first time.
Helen Bauer, BSN RN CHPN
Right, it comes to your awareness. I think that's really an important thing just to start bringing up the concept of hospice. But healthcare providers are just as bad. We don't make time for those conversations. We say we don't have time for those conversations. We don't want to document them. I think a lot of times healthcare people don't want to have those conversations because when you start talking about end of life,
all that psychosocial, emotional, family discord, disagreements, bad relationships, all that stuff comes up and then we have to deal with it, which takes a lot of skill, a lot of finesse and more time. And I think sometimes we just don't want to have those conversations because it's a pain to do it. It's more work. It's more work than we have time to do.
Brandy Archie
Mmm.
Emilia Bourland
Yeah.
Yeah, I definitely feel like I've seen that in my own practice as an occupational therapist, you know, getting in order to see someone or walking into a room for a patient and sort of it's interesting and the role of a therapist is not to tell someone when their end of life is near. Like we don't diagnose, don't, that's outside of the scope of the services that we provide or, you know, certainly ethically should provide.
So it's not my place to say, let's start getting ready for end of life. Like this is what's going to happen. But of course, as their provider, I usually know what the likely outcome of a situation is going to be. And can make it really hard to provide the correct services that a family needs at that time if they haven't already had a conversation with the physician about
what reasonable expectations of an outcome might be. there's sometimes when I can really have a great impact on doing things like comfort training, training for positioning, caregiver training, there's a lot of things that we can have a positive impact then. But then if the family is not on that page, if they're still thinking, well, let's get up and go walk 300 feet down the hall.
that it's an awkward position to be in and definitely makes it harder to provide the services that someone really needs to. So yeah, I think your point is well taken that sometimes as providers we, which isn't, I'm not trying to put this all off on doctors, by the way. I think every provider at every level, there are times when maybe someone is on hospice and.
Emilia Bourland
the therapist should be going in there and talking about, you know, comfort procedures. And instead, maybe they're thinking about, let's get someone more independent. So this is not at all to say like, this is all on physicians or there's one party that's guilty here. But I'm just saying like, when everyone can be on the same page, it really does help to create a better outcome of quality of life, which to me is what hospice is really about. It's not about death. It is about the quality of life of the person wherever they are on that particular journey.
Helen Bauer, BSN RN CHPN
It's true. It's all about quality versus quantity. But I do think it puts our therapists, know, ST, OT, PT, I think it puts them at a disadvantage when the family has completely different expectations about what the treatment should be and what the goals are because the rest of the healthcare team never had those conversations with the family or the patient before the therapy referral was made.
So sometimes, think sometimes different disciplines get kind of stuck in those conversations. And I agree with you, it's not all on the doctor. I think that is the foundational point where those conversations need to be initiated. But there's so many conversations that need to happen because advanced care planning is never one and done.
You never want to mention hospice and then just leave it there. That's not enough for anybody. It's too much for any one discipline to do. A doctor can't do all of that. A nurse can't do all of that. And I think each of us brings a skill set from the perspective of our discipline and what we do where we can talk about hospice and add value to the conversation.
Brandy Archie
Yeah, I agree with that a lot because while it's not my place to like diagnose what you're going to do or how long your life is going to be, if you have a progressive disease that we know what the outcome ends up being, that's not me. You've you've already been diagnosed with that. And so I'm just helping us figure out how we're going to deal with it from here to there. And so one of the ways I've backed into the conversation has been through equipment and
thinking about like, okay, we have this progressive disease diagnosis. You need these things at home in order to be as safe and as independent as possible for as long as possible and to make it caregiving as easy as possible as my job as an occupational therapist. And so, yes, we should figure out how to make that work for you now. But we also should think about how do we make that happen in the future because we know this is gonna change, right? This is how the words I'm kind of using. you know, it's really beneficial that hospice covers like,
basically everything that you need in order to be as comfortable as possible at home. And so I've brought it up in that context and I find it slightly easier to talk about it as a healthcare professional than as a family member and just be like, practically, instead of you trying to buy a hospital bed or get an adjustable bed or get some, all this additional care.
we might wanna at least talk to hospice and see if it's the right timing for that because they might be able to provide, they can provide those things for you too as part of the plan. And so we've gotten to that point from that incremental thinking through, okay, we know this, we're trying to do this, but we also know in the future that maybe we should also have this conversation too.
Helen Bauer, BSN RN CHPN
I really like that. That's a really neutral approach that doesn't seem overwhelming or hitting somebody in the face with it. I love that idea. As your needs change, if and when your needs changed, we have already started looking at this, helping you prepare for it, and then there's a plan in place. And I think most people like to have a plan. As much as we are death -phobic and want to deny what's gonna happen,
I do think people like to have a plan and they like to be a little bit proactive and they definitely looked their healthcare providers, the different disciplines, to be the ones who were helping them look down the road. I mean, we're the ones who are supposed to be the experts in our areas.
Emilia Bourland
So what's some advice that you might give to family members or people who are caring for someone who has a terminal illness? And it could be far in the future. It could be impending more quickly. But what kind of advice would you give them in terms of initiating helpful discussions with providers when maybe the provider seems hesitant to have that discussion? Does that kind of make sense? Because sometimes we have to, sometimes you're right, like we can't, we can't, sometimes our providers don't want to have these conversations. So how can we kind of have conversations to sort of like nudge that along and open up the door so that we can get to that space of openness in order to get the person we love what they really need.
Helen Bauer, BSN RN CHPN
Yes.
Helen Bauer, BSN RN CHPN
What strikes me about that question is it's sad that we should even have to, right? That we should even ask that question that it's there, but it's true. And there are a lot of different reasons that your healthcare provider wouldn't initiate or wouldn't bring up the topics. But I believe in person driven care. You know, my mom's generation, for them, what the doctor said was gospel.
Emilia Bourland
It's so sad.
Helen Bauer, BSN RN CHPN
If he said it, you did it. Maybe you didn't want to do that, but the doctor said, so that's what you do. I think baby boomers are different. I'm not a boomer. I'm just a year off of it, though. I think we're different. We want to drive our own care. We want to be independent and self -actualized. We're information -based. We're looking for the science and the evidence. And we want to bring up those conversations. So my suggestion is, when you're sitting with your main health care provider, tell them, I want to talk about my advanced care planning. Just be direct. I want to make time to do that. If we can't do it at this visit, because I'm bringing it up, I want to schedule a visit with you to do this. I also think that people need to do some research and some preparation on their own.
Because let's face it, if you're counting on a physician to sit down and have an hour long conversation with you, that's probably not going to happen.
that our healthcare system is not set up to care for human beings in that way, to be able to invest time. It's a shame and it's broken, but I think what we need to do is to learn how to be advocates for ourselves inside this broken system. Because if you wait for the physician to have an hour long appointment, for the system to be fixed and scheduling to be different.
That's not gonna happen before we die. mean, change like that is huge and it just takes a really long time. So be a direct advocate, communicate very clearly. And if you have a provider that does not wanna have that conversation, hear me very clearly, you probably need another provider.
Helen Bauer, BSN RN CHPN
any physician worth their value is going to be willing to have those conversations. Even an oncologist. So we hear this a lot, know, oncologists and people who work with cancer patients, they don't want to initiate those conversations because they don't want to steal the hope of people who are receiving treatment for advanced stage cancers. And I get it. There's a lot of psychological benefit to hope.
and positive mindset. However, what we have found is that the science bears out people want to know the truth, they feel more comfortable with the truth. And to me, when you're talking about making people feel more comfortable, that's quality of life. And if accurate information and deep conversations about how they feel about their own hospice care and end of life contribute to that comfort,
then that's our goal all along. Do no harm.
Emilia Bourland
Yeah, I think that's a really good point too. I also think that if, like kind of to add on to that, if people really know and understand what their prognosis truly is, they might make different decisions about the care that they're receiving to prioritize other things in their life. And that's, should, we all deserve to have that choice. Like that's a right that we,
all have is to make our own healthcare decisions. And the only way you can make a clear headed healthcare decision that is right for you is if you 100 % understand what the possible outcomes are gonna be, right? That's just what it comes down to.
Helen Bauer, BSN RN CHPN
Yeah. So I would add to that. we don't want to be, we don't want to sound like we're truth shaming because it's not for everybody. I have a friend whose wife had advanced cancer and she chose not to receive any of the information. She wanted him to make the decision. She didn't want to know test results. She wanted to be told by the physician what the treatment options
Brandy Archie
you
Emilia Bourland
Of course, yeah.
Helen Bauer, BSN RN CHPN
she wanted her husband to be told what the treatment options were and let him choose because she didn't want to carry that with her. And so here's the kicker. She was a palliative care physician. She was a doctor and an American. And in the United States, we're really big on patients' to their own information and making their own decisions. But she literally fired a physician who tried to tell her all these test results.
Emilia Bourland
Mm.
Helen Bauer, BSN RN CHPN
during an appointment and she said, I gave you specific instructions that I was not to be informed about this piece. And she stopped seeing the doctor and got somebody else who would comply. So there are people that choose and there are a lot of different reasons people choose not to have those conversations. It's cultural, there are religious and faith beliefs that people subscribe to that make those choices different.
So I do always want to say, when we talk about patients' rights to choose how the information is given, I never want to shame anybody for not wanting. If you have a reason that makes you comfortable and you can move through your treatment, through your end of life care without having all of that information, more power to you. That's entirely up to the person.
Brandy Archie
that feeds right into the same thing. It's like it's still a choice, right? And so the choice might be to not have any information. The choice might be to get all the information. The choice might be I don't want treatment for that and I want to spend my time doing other things and not be in the hospital or rehab this whole time. You know? And so like I think the most important thing is like if you don't have at least some information then you can't make a choice. So what I mean by that is like
She didn't decide that just willy nilly, all the blue. She got a diagnosis and then decided, okay, I don't want to have the test and information because I want to be whatever she wanted to do. But it still had to be a conversation. She had to talk to her husband about it. She had to think about it. I think that's like the, feels like what you're telling us is there are no cookie cutter answers to how to bring up this conversation, but that the best way is really to.
do it sooner rather than later and not in the heat of the moment, which is great advice in general, right? So I don't know why we didn't think about it applying to hospice, but like, it's something to think about at the beginning and not when you might have to need it. So I have this other question though. So that brings it up is how about palliative care? So we're talking about like the word hospice and
Helen Bauer, BSN RN CHPN
sure.
Brandy Archie
There's this other thing called palliative care, and I think it's a slight bit confusing. And I know it has a lot of things tied to it, but I really like it if you could untangle that for us and like, is it better for us to say, hey, let's talk to palliative care, even though I'm thinking that we should talk to hospice, but I'm not saying the hospice word, and maybe it goes over better, or should we just like be grownups and like say the word we're to say? Like, tell us how you feel about that.
Helen Bauer, BSN RN CHPN
I like the way you say that. Be grown -ups and just say the word we need to say. I'm a very direct communicator and I want the grown -up words. That's easier for me to process information and make decisions from. It's not always appropriate for everybody. So when it comes to hospice and palliative care, they are two different specialties and there's so much confusion not just out in the public but in healthcare. Healthcare providers themselves don't always get what hospice and palliative care.
Brandy Archie
You
Helen Bauer, BSN RN CHPN
are and how they're different. So the simplest way I can define that difference is all of hospice care contains palliative care, but not all palliative care is hospice. So palliative care can be provided in conjunction with aggressive treatment, chemotherapy, radiation, et cetera, all of those things. With hospice, it's about
comfort measures and symptom management, not so much about the aggressive looking for curative treatments. So, but it is super confusing. And I think people approach a physician and say, you know, I'd like to have a palliative care consult. I would like to talk to palliative care. And the answer they get is, well, you know, we really don't think we're at that point. And you have to have the gumption to say,
I'm not talking about end of life care with hospice. I'm talking about palliative care. But yeah, there's a lot of confusion. Palliative care is the new kid on the block when it comes to medical specialties in the United States. And I think a lot of healthcare providers don't even know exactly how to tease that one specialty out and figure out what it does.
Brandy Archie
So if it's not about end -of -life care or getting close to end -of -life care, then why would somebody say, I need a palliative care consult? What is it that you're getting just from palliative care, knowing that you're getting palliative care with hospice? But what do you?
Helen Bauer, BSN RN CHPN
Right. So palliative care on its own as a specialty provides an additional layer of care, which also includes a team that's very similar to a hospice team, an interdisciplinary team, social worker, chaplain, the nurse, things like that. They look at symptom management, but all of it is quality of life and comfort while you're still receiving your treatment. They are also really great at having advanced care plan conversations. And in a lot of ways, palliative care,
is a transitional specialty. And to all the palliative care folks out there, forgive me if that seems insulting, but it is a transition and a stepping specialty towards getting towards hospice and end of life care. It's sort of a precursor, like home health is a step in between aggressive care and hospice.
Emilia Bourland
So palliative care is also something that can be received if you don't have a terminal diagnosis too, right? if I, let's say I got in a bad car accident and I was gonna survive, but I had a lot of broken bones, it was really painful, I was gonna be in the hospital and rehab for a while, I could still receive palliative care even though I was no longer at risk of expiring from the injuries from that accident, right?
Helen Bauer, BSN RN CHPN
Right.
Helen Bauer, BSN RN CHPN
Right, because it's about comfort. So people with chronic illness can have palliative care as well. Yeah, you don't have to have an end -stage diagnosis. So even those advanced care plan conversations, maybe that's not one of the parts of the plan of care from a palliative care doctor that you would need at that moment. But they're still providing support for quality of life, symptom management.
They're looking at your psychosocial needs and it's pretty, it's well -rounded interdisciplinary care, but no, you can have it when you have a traumatic injury or an accident, a chronic illness that needs management. There are a lot of different scenarios. I think it's very underutilized as a specialty.
Emilia Bourland
But I kind of like, it almost brings it back, what you were saying before, this kind of brings it back full circle to where palliative care can be a way that this idea of hospice gets introduced earlier in a conversation for someone. So that kind of like brings the conversation almost to a full circle there saying like, well, we started by saying,
We should have these conversations early. You know, this is one way that maybe those conversations can be had actually earlier with everyone kind of being involved in getting on the same page. So it's not so scary when that time does actually come.
Helen Bauer, BSN RN CHPN
Absolutely, and that is one of the interventions that a palliative care team provides when the conversation about hospice needs to happen. They're very knowledgeable about hospice care.
Emilia Bourland
Well, I think that we care -lap the heck out of this one. I think we did some excellent care -labbing here.
Brandy Archie
I agree.
Helen Bauer, BSN RN CHPN
You guys always do.
Emilia Bourland
Helen, thank you.
Brandy Archie
Hello, we're really thankful for you, yes, coming on the show and helping us untangle that and like giving us, you didn't give us the words, but you gave us a lot of words so that we could have a way to think about this and like have a conversation when it's not so heated. So thank you.
Emilia Bourland
Mm -hmm.
Helen Bauer, BSN RN CHPN
You're welcome. The one last thing I would say is that when you need to introduce the topic of hospice, if you do it with compassion and empathy and respect, you're not going to use the wrong words.
Emilia Bourland
Yeah, I think.
Brandy Archie
Mm.
Emilia Bourland
That is amazing advice and words of wisdom to wrap up this episode with Helen. Thank you again so much for being on another episode of Care Lab. As I said at the beginning of the episode, y 'all, after you make sure to leave a review, like and subscribe to Care Lab, make sure that you go check out Helen on Heart of Hospice. It's really, really a amazing podcast. And if you enjoyed this one, I know that you will get a lot of value out of listening to Heart of Hospice as well. So thanks again, Helen, for being here and we'll see you all next time right here on Care Lab. Bye.
Brandy Archie
Bye everyone.
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