SPEAKER_00 0:00

So we often ask about advocacy, and you know, we know a lot of people really uh are concerned about how do you have somebody be your advocate at the end of life and how do or how do you advocate for yourself when you're sick or you're overwhelmed or you're just trying to navigate it the healthcare system, which is so complex sometimes. And who's gonna speak for you if you can't speak for yourself? That's a hard question. So in this episode, we had a really fun opportunity to talk to Beth Trappert. She's a former critical care nurse and healthcare advocate who has decided her work is to help patients and families navigate healthcare with greater confidence, clarity, and compassion. Her journey into healthcare advocacy began with experiences in caregiving and was shaped by a powerful moment in critical care that involved a family's cultural traditions and wishes for a loved one at the end of life. That experience helped her recognize how easily institutional systems can overlook what really matters and most uh and is most important to patients and their families. So important.

SPEAKER_01 1:03

So important. And thank you for staying with us because we get to hear about Beth's journey from that moment when she noticed it to becoming the patient advocate. So we are exploring patient advocacy, healthcare navigation, healthcare proxies, advanced care planning, cultural sensitivities, and end-of-life care. All of those can be like you want them to with your family, your your familiar ways. Beth's message is ultimately empowering. You don't have to be a healthcare professional to become a better advocate. Sometimes advocacy starts with asking one more question, making one more phone call, or just making sure the right person knows what you really want.

SPEAKER_00 1:48

Yeah, so important. We're all about that here.

SPEAKER_01 1:51

All about it. So stay tuned. Let's keep listening. Welcome everybody. I am the Reverend Mother Ana Luisa Remendades. And on today's episode, we meet Beth Trappert. Beth is a healthcare advocate and retired critical care nurse with a 35-year career spanning direct patient care, clinical leadership, research operations, and patient advocacy. Beth is a founding and advisory board member of the National Association of Healthcare Advocacy, the NAHAC, and has played a key role in advancing professional credentialing for patient and healthcare advocates. Welcome. Thank you.

SPEAKER_00 2:36

So great to have you. Thanks for being here. Um I'm the Reverend Waquil David Matthews, in case you haven't figured that out after hopefully you've been watching this forever and this is another.

SPEAKER_03 2:45

Three years.

SPEAKER_00 2:48

In 2008, Beth can fo co-founded the Allied Health Care Advocates of Washington State, and we met her through that. Um, through one of our former episodes, one of our early episodes was Rebecca Crichton, a wonderful person who does a lot of work around here. Um, this that was Washington State's first independent health advocacy company. And later she co-founded the Washington State Health Advocacy Association, which evolved into the national organization, Health Advocate X, where she serves as vice chair and marita. That's probably Spanish.

SPEAKER_01 3:22

Latin.

SPEAKER_00 3:23

Latin, yeah. Beth is passionate about empowering individuals to navigate healthcare with confidence and achieve better outcomes. And of course, we are passionate about that as well. Yes. So we really are glad you're here. Welcome.

SPEAKER_01 3:35

Yes. Thank you. Yeah. So, Beth, we'd like to start out by asking all of our guests what in life inspired you to be a part of this line of work.

SPEAKER_02 3:49

Yeah, so um there's probably a personal side and a professional side. Um, my I lost my mother when I was 10, and I was the youngest of six, and I ended up doing a lot of caregiving for her at her end of life and was giving pain medications at the age of eight. And kind of learned compassion and empathy at a very young age. Um, and I think that planted a seed that I was actually good at doing that work. Um, I then did go on and become a nurse. I thought I always would once I had that experience. Um, and I loved nursing um a lot and did a lot of work for years in many institutions. But I came to a place in 1981, I was one of the assistant uh managers in the ICU, and I had to take over for someone who needed to go on a break, or no, they needed to go get someone from the operating room. And I wasn't this patient's nurse, but I stepped into it, and it was a very small little older Asian man who had cancer and had just come back from surgery, and they basically said they couldn't fix it and that he was probably gonna die shortly. And his family was a huge, huge Asian family, and they were just completely lost. Like, and so um I said to them, what you know, what can we do to, you know, what can we do? Guy, you know, you you obviously are in a very this is a tough situation. And they said, because they were I think they were Vietnamese, they said we have to give him herbs so that he can go to the next world the way our culture has taught us. And I said, fine, you know, where are the herbs? They had the herbs, and I said, okay, and he had a tube into his nose because he wasn't eating, obviously. And um, there was an order that there was to be nothing put in that tube because he was not eating and they didn't want, you know. Well, I just decided that the family should put the herbs in that tube because that was the only way they were going to get into him. And I did that. And in the meantime, the resident came around, not the attending physician, but the resident. And he said, What are you doing? And I said, I said, Well, you told the family there's probably no hope, right? That this man is dying. He said, Yeah. He said, but what are you doing? And I said, This is what they really needed to do. This is their cultural ritual, and we're that's what we're going to do for them. And he said, No. And he went and he reported me, and the nursing supervisor came and she's like, Oh, Beth, come on, really. And I said, Sorry, I'm gonna just stand right here with this family as long as they need this to go on. And when he did pass away, um, they wanted to move him out of that room and the family wanted to bathe his body and do all these things. And I said, I said, look, you can fire me, but I am not allowing this family to not have what they need at this man's end of life. And they didn't fire me, of course, but that was the day in my mind that I realized to do the kind of true advocacy for people, like their wishes, not our institution's wishes, that I'd be I'd become a barrier in that facility. And the the facility was a barrier for me to do the work I wanted to do. So I left. It's my last day of bed said nursing. Um, and it's kind of remarkable because I literally that story is still in my mind when I'm trying to help people that they should have their end of life the way they deserve to. And so I like telling that story, but people get upset and they're like, well, that's not really how our health our hospitals are. And I'm like, that's how that hospital was for that family. It doesn't mean it's always gonna be that way. But for me to do what I really felt was my passion and mission, I needed to go and do it independent of our healthcare system.

SPEAKER_04 8:15

Yeah.

SPEAKER_02 8:15

So when I started doing advocacy work, um, it was a for-profit business and we charged people because it's it wasn't reimbursable and um eventually came to the decision that people who really need us can't afford us. And so that's when we switched over to a not-for-profit so that we could provide some services outside of the fee-for-service kind of model.

SPEAKER_04 8:42

Yeah.

SPEAKER_02 8:43

So that's a long story answer to your question.

SPEAKER_01 8:47

No, it's it's exactly what we wanted.

SPEAKER_00 8:49

So Yeah, and it's perfect. And we've heard that before. Um, and we've warned people about this when we talk about planning for end of life, that they need to know what the facility they're in wants to do. Um, we had somebody whose mother had dementia who had cared for her father when he had dementia, and she'd filled out a dementia care uh you know, uh care directive. Um, the whole family knew about it, agreed to it, and were going to honor it. But when she got dementia and got to that point, the facility she was in refused to stop feeding her, right? Um and so they had to take her out of the facility. And then they report the facility reported her them to social and health services.

unknown 9:30

Yeah.

SPEAKER_00 9:30

Luckily, social and health services said, yeah, that's not an issue, you know. But but one of the things that came out of that, which I thought was very interesting, is their hosp hospice doc talked to them about it and they decided they could do uh kind of a new VS CD of voluntary stopping and eating and drinking um by doing um comfort version of it, which is offer the food, offer the drink. If they say no, don't force it, right? Yeah, um, which I thought was a good solution to that. But yeah, but we hear this a lot, and and so thank you for sharing that. It's also important for people to know.

SPEAKER_02 10:03

I just I had to move someone who refused to tube feeding in a calculation hospital, and they had they just they wouldn't allow it, which is crazy. But um, and then I also had a place where when the woman who was on hospice um decided to stop eating and drinking on her own, they wouldn't let her stay. It was like crazy. And it wasn't that long ago, right? We think this is ancient times, but it still is a problem.

SPEAKER_00 10:34

It sure is, yeah, yeah. Well, tell us more about the work that you're doing in your organization and um the kinds of things that you help people with and how it works for folks.

SPEAKER_02 10:45

Yeah, so our organization um is really quite wonderful. We have a directory of advocates who people can contact, and there are, you know, some of them have specialties and some of them are just uh senior advocates. Um but and they all can charge what they want, or they can work for bro pro bono, or there are now some Medicare um codes for navigation, but they're very poorly funded, and so people still usually charge for their services. Um and uh what I find most um interesting and fun now is raising awareness and educating people about this role because you know, I always thought that only nurses could do this. Well, no, anyone with good communication skills can do this job, right? You have to be trained and you have to understand the system because you're gonna come up against those same barriers that I came up against. But so I'm on the education committee at our organization and I help to educate all of our programs are open to the public because we're a not-for-profit. So we have to make sure when we're doing events, like today, we did a community conversation on how to love your liver and all the issues with liver disease. Um and we have to make it at the public's level, and so we work hard at that and also trying to make sure that we're providing information that's available to any level of education. Um, so I do that, and then I I am on a now a national coalition of other health advocacy organizations. And we as a group do some a little bit of policy work, and we also are um we're gonna do an annual conference this year in November, and it's four different organizations across the country, and we it's gonna be remote, um, but we try to get all of our members together, like to just keep a network of advocates who are doing this work. Um and then the other thing I'm doing is I'm on an advisory group to develop a curriculum for higher education institutions so that this would actually be a undergrad or grad program, and it would be taught to nursing programs, medical programs, social workers, community colleges, anywhere where people are learning because we learn a lot in nursing and medical school. They don't spend nearly enough time on communication skills. And honestly, this role is really truly communication skills. And so we feel like it should be part of the curriculum. So I'm develop I'm helping develop that curriculum, and we think it'll be available next year. So that's exciting.

SPEAKER_00 13:50

Yeah, that's wonderful. Yeah.

SPEAKER_02 13:51

Yeah.

SPEAKER_00 13:52

I mean, yeah, you're totally answering some of the questions we've come up with over the time, you know, like how do we provide this for people? And so I'm really glad you're able to do that. Thank you for that.

SPEAKER_02 14:02

And the other thing I think you and I talked about a little bit before the call started is it's my passion to help people choose a healthcare proxy.

SPEAKER_04 14:11

Yeah.

SPEAKER_02 14:12

Um, and sometimes I use the word choose because the hardest thing is finding, because there's not that many people who would say I do healthcare proxy work. But if someone could be trained who you trust and you think is, you know, someone who would fill fulfill your wishes, then I I really am passionate about having people understand that role, what that is, because they say, Oh, I have my I have my power of attorney.

SPEAKER_00 14:42

I'm like, mm, you know, it's not the same.

SPEAKER_02 14:46

Let me explain. Yeah.

SPEAKER_00 14:48

Yeah, and and we, you know, powers of attorney end when somebody dies. So you'd have to deal with that part of it too. Um, we we uh, you know, this nonprofit I was talking to you about earlier, I think it would be really wonderful to work together to do some education around that. Because that's really what we're one of the things, one of our goals. So thank you. Um wonderful. Appreciate you. Great to great to meet you and spend time with you. So I'm good.

SPEAKER_01 15:13

Um yeah. So what are some of the challenges that you find in your day-to-day?

SPEAKER_02 15:20

Well, I'm sure you've heard this before, especially I know I've listened to some of your um recordings that it's really challenging to get people to talk about this. And I love that you're called end of life conversations, but sometimes I try to address it as life conversations, like, you know, oh, where do you want to live when you're retired? Oh, have you thought about filling out your directives and try to make it just part of their life? And trying to get people to talk about. I mean, I have an 80-year-old sister, and she's having a birthday this year, and I've asked her, I said, Did you finalize your documents? And she hasn't. And I, you know, it's so frustrating because I want her to have what she wants.

SPEAKER_00 16:11

Exactly. Yeah. So you also spoke about a challenge before we were talking. It looks like Anna Louisa had something come up, but she'll she'll be back. Okay. Um, but um, you talked about a challenge that I think is really important to talk about, which is that when one does volunteer or become an advocate, it can take a really, really long time to deal with it. You said you had somebody who started in 2007 and you're still working with them. Um with my parents, you know, and that was that took a couple of years, even though they had done a lot of that work. Um, but it can take a long time, and that's something to be aware of. So don't talk more about that.

SPEAKER_02 16:47

Yeah, it's just if if someone hired you or asked you to be in that role, that means that you're going to be there. You're gonna show up when the time comes for them to not be able to, you know, make their own decisions. You're gonna make the decisions that they've documented that they want done. And it's it can be years. I mean, we we thought this one client would have died a long time ago, and she's like the ever ready battery, you know. But if she goes in for surgery, we're all like, okay, you know, we gotta go or we gotta be there.

SPEAKER_00 17:21

And yeah, yeah. So right. It can take a long, it can be a a big commitment. We talked about in the class one time, and I think we're gonna add this to our suggestions of having something in your trust um that pays, it helps to pay your advocate, you know, for time if they need to like change, if they need to come visit, come to you if they're far away, or so they'll need uh transportation and accommodations and maybe a s a while uh a wage, a salary giving up their work. Yeah. Yeah. So yeah, so all that is and and of course the other piece of that that we talked a little bit about is it's very expensive. Um and so again, this is where there's a need, and I think that's what our nonprofit called Grace Pathways, what we're hoping to address is is help people with that affordability issue. But um, but yeah, it's it's so needed. So thank you for sharing that. It's important.

SPEAKER_02 18:11

Yeah, the other challenge that I find is I try to talk with people about who they think they want, and as soon as they say their daughter, because that's what everybody says, right. You have to remind them that it this is, you know, this is really hard. And is your daughter the right person to be doing this work? Or your spouse, that's the other one is you know, their spouse. And sometimes that's not the best. So I do try to talk with them about, you know, is there anybody else in your life that could possibly be a better option? Because yeah, it's hard. It's a hard thing to do.

SPEAKER_00 18:50

And Dr. Matso, who we just talked to, um and will be on podcast before years probably, um, is uh was saying the same thing, really, that you know, people kind of default to a family member often, and that's not often that's sometimes that's not the best choice. It depends on the family member. Umisa has done that work and is capable, but and you know your family, but um, but it's really worth uh I think the important part of that is the part about do will they have the capacity, will they do what you've asked, will they be willing to stand up to the people who are not gonna want to do what you've asked, right? Which is hard. It's hard work, as you said.

SPEAKER_01 19:25

And also what I really took away from that last interview, Joaquil, was that let you know, yes, that family member might be the best person for that role, but that also takes them away from their grief process, takes them away from being present and allowed to, you know, just kind of mourn this process. And instead, you know, like for my like, you know, my reality was like calling the the coroner or the the funeral director and talking to doctors, and there was a lot of work to do rather than just sitting at her bedside and being the daughter or the son or the right, yeah. So that was that it that was a really interesting piece for me, actually. So yeah.

SPEAKER_00 20:08

Yeah, I agree. That's really important to think about. So yeah, thank you.

SPEAKER_01 20:11

Which is funny because uh the people that I've had for myself are not family members, and I remember saying that like I want my kids to just be present to my passing and have others, you know, be a part of it. So I, you know, I understood that for myself, but but you know, oh yeah, I didn't do that with my sister. Right, right. Yeah, you know.

SPEAKER_00 20:35

So given this work and your work as a nurse and everything, is anything frightened you about the end of life?

SPEAKER_02 20:42

Um, I guess just that I wouldn't be in control of it.

SPEAKER_04 20:46

Yeah.

SPEAKER_02 20:47

And that I've chosen the right person who then is in control. So back to healthcare proxy. But but um I I unfortunately have had two siblings die of dementia and Louis body dementia, and I was there. I was not their healthcare proxy, but I was there with their spouses when that happened. And, you know, even though you have everything documented, and you know, my brother-in-law had just the hardest time that she didn't want to be fed, same story. And I arrived at one point because I don't live in the same state, and he had the aides feeding her, and I I brought in her directives and I said, you know, I hate to bring this up, but honestly, we sat together, the three of us, and she told us this, and we really have to honor what she wants. And his daughters came in and said, Thank you, Ampa, because they were just like beside themselves. But yes, he just it's so hard.

SPEAKER_00 21:48

I mean, of course, yeah.

SPEAKER_02 21:50

He thought if he stopped feeding her, he'd lose her that day, like in an hour, you know. So so yeah, I think that that it's not a fear necessarily, but it may. Makes me want to make sure whoever I'm asking to do that, that that's what's gonna happen.

SPEAKER_04 22:07

Yeah. Exactly.

SPEAKER_02 22:08

I agree.

SPEAKER_01 22:09

Yeah.

SPEAKER_04 22:09

Yeah.

SPEAKER_01 22:10

And you never know, right? That there's like in our best case scenarios, we'll be home and people will understand the around you, or you'll be in a hospital setting with somebody carrying your uh your advanced care directive plan and being able to give it to whomever's in that space. But then there's all these other, like my biggest fear for me is like, you know, having an accident somewhere and then having like, you know, the emergence decide like we're gonna do everything we can. I'm like, oh yeah, can I have a hologram just come up and say, oh, it's okay, she's ready.

SPEAKER_00 22:45

Yeah, people tattoo their tests sometimes, you know.

SPEAKER_01 22:47

Yeah, the data.

SPEAKER_00 22:49

Yeah.

SPEAKER_01 22:49

I'm not sure that works either, but I don't think it does actually, because as soon as 911 is called, you all bets are off. It's a life preserved.

SPEAKER_00 22:58

Yeah, you have to have the pulse form so that the medics, yeah, there's we have a lot of my my friend who was a medic said they are so trained to get somebody stable that they're gonna immediately do that and they're not gonna look for a pulse form unless somebody's in their face saying this, you know. So anyway, yeah, so great, very important. Thank you for reminding us again of how important it is to have these conversations and and know who's your advocate and that they can do that for you.

SPEAKER_01 23:26

So, Beth, when you have a moment and it's also overwhelming that people are not paying attention, they're making these choices willy-nilly and just frustration. How do you get yourself resourced and back to being grounded and knowing that this is good work and you can keep going? You're asking me, what's my self-care? Right? Yes.

SPEAKER_04 23:52

Exactly. Yeah.

SPEAKER_01 23:53

Um I always try to make it a different way because I I the same question over and over again.

SPEAKER_02 23:57

Yeah, yeah, yeah.

SPEAKER_01 23:58

How can we how can we rephrase that?

SPEAKER_02 24:00

Um, so about a year ago, I went to a yoga retreat in eastern Washington. And unbeknownst to me, it was mostly meditation. And I didn't know that. And I was not really meditating, and I was, it was new to me. And it was awkward at first. I mean, it's very funny, but when you you when you're a nurse and they say, Okay, you know, breathe, you know, take a deep breath and then breathe into where you're feeling that anxiety. I'm like, no, it doesn't work that way. It goes into your nose, in your trachea, down to the alveoli. And and the instructor was like, you gotta stop thinking about it in anatomy. And I'm like, okay, okay. So I did, I learned a lot, and I have been meditating every day since it's almost a year ago. I know, wonderful, which is kind of crazy, but that I think is is a very grounding thing if you can really get allow yourself to um get into it and make it a daily ritual. Um and I also am a huge outdoors nature person. I love to I have a dog, so walk to dog hike. I I I still ski a lot. Last year I skied 52 days in the winter.

SPEAKER_03 25:23

What?

SPEAKER_02 25:24

Wow. So I love being in the mountains and on water. I'm a big swimmer, so I get a lot of if I need therapy, I go outside.

SPEAKER_03 25:35

Yeah. Yeah.

SPEAKER_02 25:37

And I love to exercise. It's it's unfortunate because a lot of people hate it, but I really I love it. I get it. Yeah, yeah. So to me, those are the things that resource me. And then I try to keep myself, you know, up to date on all the things around healthcare and advocacy. And because I've been in this field for so long, I I stay involved at, you know, a lot of um big conference kinds of talks and prepping for them. I don't necessarily need to speak at them, but I help with a lot of the prep and you know, making sure we're getting the right information to the right audience.

SPEAKER_00 26:20

Yeah. So does that come up at the conferences like self-care?

SPEAKER_02 26:25

Oh, yes.

SPEAKER_00 26:26

Is that a is that a big part of it?

SPEAKER_02 26:28

Yes, yes. And there's a a lot of information for nurses and physicians and anyone who's worked through COVID around burnout because it really is a it's a big problem.

SPEAKER_04 26:41

Yeah.

SPEAKER_02 26:42

And um, you know, everybody thought always thought burnout was your own problem. You're you're you're tired, you're not working hard enough, you're not sleeping enough. And it really is that you go through trauma as a provider when things are so challenged like COVID was. And our staffing is still not great. Our health care in the United States is not great. And it's a trauma for people that are really trying to do this kind of good patient-centered care. And there's not enough time, there's not enough resources. And so, yeah, I I think it's a big topic, and we we bring it up a lot. We're doing a our organization is doing a conference, um, not Health Advocate X, not the national conference that I was talking about. Um, and we're gonna focus on that trauma and self-care for people.

SPEAKER_00 27:40

Oh, wonderful. Yeah, well, that's such an important thing, and we really always want to emphasize to our audience that this work, this uh talking about this is important, helping is is important, and taking care of yourself is equally important because you're not gonna be able to do the work if you don't take care of yourself, right? So or do it well. So thank you. Yeah, beautiful. Um, is there anything you wish we would have asked you about before we finish up here?

SPEAKER_02 28:06

Um I don't think so. You I think in our in our call, um, in our conversation before we started the you ta you mentioned the dementia directive. And I think it's really important that people know that that is something that is out there and it people should learn about because it's different than just your regular directives. And for families, especially who are dealing with someone with dementia, I think it's important that people understand what how do I get it and what you know, is it a legal document? And you know, there's a lot of questions about it, but better to have it written down and shared with everyone. And um so yeah.

SPEAKER_00 28:54

So um on your website, is there information? I can actually put a link to End of Life Washington or some other places that have that access to that.

SPEAKER_02 29:02

Yes, and um Barack Gasper, who is um a physician at the University of Washington, has he developed a dementia directive and he has a uh a whole Alzheimer's program now that is really focused on families. Oh and we're gonna, I think, have him speak later this year on the dementia directive because there's there are many versions, yeah. Um, and he feels like you know, his is the best of his own. He's the best, of course. Yeah, but he's a really delightful person to work with.

SPEAKER_00 29:37

And yeah, he sounds like we should get him on our podcast at some point. Yeah, you should.

SPEAKER_02 29:41

He's a very busy man, so a little bit hard to get him. But great.

SPEAKER_00 29:46

Yeah, I've seen that one. That's and in fact, the End of Life Washington website has that on there. The other thing that's come up recently that I think you probably know and and could speak to is uh the um disposition um of your body uh and and the uh directives, disposition directive, which is something separate and it has to be separate because it's not our attorney or healthcare advocate doesn't have that that power or that right afterwards. So if you want something specifically done with your body and you need somebody to know and you need to have it written down, and so that's another document that we've recently been in for c telling people about.

SPEAKER_02 30:21

So yeah. Yeah, I just recently uh attended a uh I guess it was a webinar about composting your body, which you know it's just an interesting, there's lots of lots of choices now.

SPEAKER_00 30:36

I know in some states anyway, yeah. Some states, that's right. Yeah. Yeah. We've talked to people who do that, who do the natural organic reduction composting, and they some of them have said, you know, we'll we'll help you get your body to our state if you need to, you know. So anyway, it's worth knowing more about. So thank you for all of your information and all that you're doing. And we will link to your uh nonprofit in the great podcast notes, and people can keep in touch and and really appreciate all you're doing. I'm sure you and I will be talking soon. Great.

SPEAKER_02 31:09

Well, thank you for having me. It's it's fun and it's really great to meet you guys. And yeah, stay in touch. We'll maybe do it again. Yes.

SPEAKER_00 31:26

Thank you for joining us today. Thank you to Charles Heastan, the composer of the original music you are listening to now.

SPEAKER_01 31:33

And of course, thanks to you, our audience, and all of our amazing guests. Please come back next week for another great episode. Share this with your friends, family, and community. We hope you will subscribe and follow us on YouTube, Facebook, Instagram, Blue Sky, and Substack. Each guest's additional information will be found in the podcast notes. And of course, if you have a good end of life story to share, please reach out. We are always eager to hear from you.