SPEAKER_01 0:01

Hi, welcome back to End of Life Conversations, where myself, the Reverend Ana Luisa Armendaris, is here hosting a conversation about what we've noticed this week in her headlines. This week I shared an article from the New York Times called She Didn't Want to Live with Advanced Dementia. So why was she being kept alive? So my fellow listeners, what are we thinking about this article?

SPEAKER_00 0:29

Yeah, well, we want to invite you all to continue to share and subscribe. And so glad you're here. We uh yeah, we but we had a good conversation just before this, thinking about um all the ways this is affects people, and we've all experienced it. Um, that you know, people who are uh who even if they've stated their wishes that they don't want to be kept alive that way in a state of vegetation or whatever, vegetable or whatever, and there are now ways, and there's new ways to in your uh advanced care directives to speak to that. Um that even though that may be the case when it comes right down to it, when the time comes, and in this article they talk about it, um, it's much more difficult than just saying, yeah, they don't want to be fed anymore. Because there are rules that the organizations that you know the homes might have, um, there are legal things that could come up. Um, of course, we had somebody get um arrested or for for having given her mom the the treatment that was asked for. Um anyway, uh it that's sort of the the the uh container that we want to get into here. So so yeah, where do we go from here?

SPEAKER_01 1:42

Sam.

SPEAKER_02 1:43

Uh hi, I'm Sam Lee Zemke, editor et al. Here. Um and I've probably had the least direct contact with um dementia and and uh advanced like memory care, though um my mom was a like a geriatric fitness person uh in her career before retirement and uh taught brain fitness courses and stuff like that. So there's like an osmotic sort of relationship. You learned some stories, familiarity. She learned some stories, heard it, and and I've gone over, you know, in in my training that I'm I'm undergoing um in end of life and and death do-aying and and grief care is working with dementia and the signs of that and Alzheimer's and and all that sort of stuff. So um I'm excited to learn more and uh chime in if it comes in.

SPEAKER_01 2:46

Well, I just uh was sharing with my fellows here that when I had an uh the experience with my sister at the hospital at the end of her life, the state of Colorado allows loved ones to take their decedents, their loved ones' body once it has died, out of a hospital and you know, take it home if they need to have a ceremony or family wake. It is a hundred percent legal and safe in the state of Colorado. But hospitals can have their own uh rules that challenge the state's ability to give you permission. So I was thinking about that as I read this article because people can say, and I just worked on my father's advanced care directive plan last week, and we had this conversation about comatose. If you know he's in a coma, uh he really doesn't want to be kept alive forever. And and I was thinking about how does one advocate with your advanced care directive plan already in place, but how do you go into an industrial medical setting and say to them, what what is what's the verbiage, right? How do can I get my, you know, and I think in the movies everybody always says, can we unplug them?

SPEAKER_04 4:08

Right.

SPEAKER_01 4:09

And you know, that's kind of a the euphemism for we need to let them die. But there is pushback, I think, collectively in this culture that they don't like to hear that. So it's a fraught situation.

SPEAKER_00 4:22

Yeah, and and part of what makes it d difficult is that every one of these organizations, the elder homes, the hospice care places, um, have their own rules and their own way of doing things. And in fact, in an article, they had the people that um refused to do what they asked them to do as far as stopping eating and drinking. Um, so they said, Well, we're gonna take her home. And they said, Well, then we're gonna turn you over to um social services. Social services, which they did, which they actually did. And elder abuse? Yeah, elder abuse. And so um turned out the elder abuse folks did get in touch with them, um, never followed up with them. And it sounds like, you know, they had a pretty good, they had really good case for this is why we're doing this and this is how we're doing it. And actually, I love it what they actually came up with, which is a great new thing that I hadn't heard of before, is instead of actual VS C D, which is stopping eating and drinking, is um comfort VSCD or comfort so that um it's it's arranged, it's kind of a compromise in a way. It's arranged so that you only feed the person when they actively are showing you that they want it, you know. And I that could be, especially with dementia, that can be certain clues, but you have to know them enough about those clues to say yes. And if they're saying no, I don't want to eat, then you don't feed them, you know. Um so if they're pushing it away, you don't put force it on them. And I've certainly been in situations where family and and again, it's a cultural thing too. There are cultural and religious beliefs that say we must keep this, we must continue to feed them. It's a culture, you know, or it's a language of love, right?

SPEAKER_01 5:54

Yeah, exactly. It's yes. And you know, I I remember getting trained on discontinuing eating and drinking years ago when I was in hospice, and there was an uh a question from somebody, a nurse, I think, who was actually working with a family whose member was proceeding with this choice. And she said it's terrible because every once in a while they'll remember, like, I want some ice cream. And I really appreciated the um the panel of people, the doctors, the clinicians who were there who said it's okay to show up with a tablespoon of ice cream and offer it. Chances are they'll taste it and they'll have enough. Like, that's just it. You're not like giving them a pint. And so, you know, it is not you don't have to sit and witness your your loved one suddenly remember that they want some, you know, fried beans and tortillas or something. Like, you know, like you can actually and they won't want that much if they're actively dying. It's it's a it's food entertainment and not necessarily nourishment.

SPEAKER_02 7:00

Yeah. That that uh brings up a a question for me, which is like physiologically, do the two of you know if like if V set is has begun and then you give somebody food, like does that cause like a physiological disturbance? You know, like you're saying to just eat a little bit, right? You know, if if you've decided that what you want is at a certain point, I don't want to eat and eat and drink anymore to allow my body to naturally die. Like eating slows that eating a meal or eating a little, you know, rice and beans or a little bit of ice cream slows that process, but is it gonna cause like shock at different points in that process?

SPEAKER_01 7:50

I think it's just a contingent on what the person is actually asking for. It is not a full meal. Like once people are starting the process to die, their appetite is not gonna be like, oh my god, I'm famished. Please give me, you know, a quart of water, group beer floats, and whatnot. From what the clinician said, is like generally people just want a taste. And a taste is not going to make it like an extreme situation where your body is, you know, containing all the water and liquids and you're puffing up. Um, you know, there's it's it's not a binary, it's yeah, it's a spectrum.

SPEAKER_00 8:27

And and I like they actually in the article they said that at one point when they had started this new comfort process, uh comfort feeding thing, that the the somebody came in with a milkshake and their mom wanted a milkshake and they said, Okay, have a milkshake, you know. And they didn't say whether she finished it or not. But I love that it's like I love that way of looking at it as being not again. Somebody else in there, one of the, I think one of the statistics or the um what's am I looking for? Ethics, ethicists, yeah. Um, or doctor, somebody said, you know, when they heard about this, they um they had always felt like it was black and white. And nothing is black and white. That's that's part of our work, right? Nothing is black and white. And this is a good way of thinking about just how do we treat it in the moment with what's really compassionate and caring and loving of the person, following their wishes but not allowing, not asking them to not helping them not to suffer. Yeah, and not to suffer. And possibly if this was and it's being researched actually in my neighborhood here. Um, if the research goes on and becomes something acceptable, I think it could be something could change some of the rules in some of these organizations that it just balk uh balk against it, you know. So hopefully, I mean, again, there's gonna always be organizations, especially when they're owned by religious institutions that are gonna say, no, we will not do that. And if you take them out of here to do it, we're gonna turn you in. You know, that's gonna happen. But if you have what they did, and what I think is important for our audience to know, is if this is something you're thinking about, they had very, very good documentation of what she had wanted. They had very good documentation of advice from their um doctors about what would make sense, and they had documentation about how they were treating her and how, you know, and they weren't making her suffer, and that they were being kind and caring. And that everybody in the family, including and and their doctors, were all on board. And so I think from that, the um health, the social services kind of said, Well, yeah, this isn't an issue, you know. Hopefully, I think that's that's that would be the hope anyway.

SPEAKER_01 10:28

I think another piece of this is uh that I've been actually thinking about for this past week is, and I think about this almost daily. It's values. What do we do? Wow, we how do we talk about values? Because this culture also, everybody's willy-nilly, you know, just going daily life doing whatever, no budgets, no thoughts to, you know, what's coming. But I realized this last week I actually worked on some advanced care directives and thought about the process. And there was an article that I read that I may have shared with you about um a physician whose whose own parents didn't want to deal with our advanced care directives. And what I realized it is all so extremely difficult and fraught because language is this the the I what I want a word, uh I wanted to say like the the keen, but I want like you know, the driver. Language drives the emotional status of a space, of an interaction with somebody who's like in a power dynamic of being a hospitalist, a doctor, a clergy, a chaplain that's at a hospital. Those people are always looking to make sure that that client, that person in the hospital is safe and that their needs are being met. So when we show up with, you know, our like, for instance, when I showed up at my sister's, you know, death time at the hospital, I know I raise a lot of red flags asking the questions I did. And the the chaplain told me, he's like, Oh yeah, you were flagged, and we had to like make a bunch of phone calls because you were into space. And all I was asking is like, I would I need to drive my sister to the crematorium because that's what she and I had decided.

SPEAKER_02 12:18

And so did they tell you what like what those red flags were?

SPEAKER_01 12:24

Oh no, because I was exhausted at this point because but he did say this he was like, You created a big kerfuffle here in this hospital. We made a lot of phone calls. Uh fortunately, I found a funeral director who was like, you know, shut them down. Let's like do our thing here. We got you got this. But you you don't always get the people who are your advocates. You don't always get the people who will show up and like, we got this, back off, you know. Legally, I have every right. But going back to, you know, being in a situation where your loved one is in a hospital setting, and you know you have a document, you know that family member's values, and now you're up against the wall of you know, clergy and or doctors who say that's not gonna be okay. Rather than saying, I want to, my family wants to, needs to take our mom home, I think that it behooves us to take a moment and to stay state who mom is, you know. Uh Tracy loved her home. She has her family, her kids, her children. She wanted to die at home peacefully in her bedroom. How can you help me facilitate that in a very safe and supportive fashion? Because I think that all of us, well, me, all of me, shows up and it's like, my sister said to do this, you know, and that's all. I'm like, I don't have time to waste telling you the story. I think we do need to tell the story because words matter.

SPEAKER_00 14:00

I love that. And that's maybe something else that we could include when we think about our advanced care directives. Include that in the advanced care directive. This is the story. This is why we're making these choices. Uh maybe not as part of the directive itself, but maybe, you know, we talk about the uh ethical will idea, you know, the letters, the love letters. That might be a really good thing to have as part of your documentation. And um, and if nothing else, just something to refer to with your caregivers.

SPEAKER_01 14:26

Well, it's it's it's not, it's, I think it's the the health proxies um job to know this. I don't know that it needs to be on a specific piece of paper or marked down, but if you are speaking for somebody who is unable to speak for themselves, you are using that voice and narrating that story rather than saying, I have the you know, the legal power to do the following. And if you're met with resistance at a hospital, in this case, you know, you know, she had dementia and family's like, okay, we're done here, right? But the hospital said no. So I think it it requires, I mean, it's almost like uh getting out of your own body and being a uh a spiritual force in those moments that really tell the story of the person who you're trying to support.

SPEAKER_02 15:22

Yeah. This sounds also like a really like key point where having non-familial support would be really helpful. Because if your parent is dying to be like, I need to step away from this, step away from my experience in this and say, look, I'm gonna bring my softest, kindest, most encouraging, positive self to tell the story of why we need to do your mom home when you're like, oh my god, I have to take my my mom who's in advanced dementia home to die. Right. You know, to have somebody who knows the story. Right. And I think that's maybe we're having that that extra context documentation that you were talking about, Waquil, could be helpful is to like uh help remind like a third party, like this is why here, like read this. This is one thing you can tell the doctor, like this is what needs to happen.

SPEAKER_00 16:19

Yeah, even if it's not a physical piece of paper attached to it, just having that conversation or writing it out as a journal or whatever. Um, it's part of you know, we always talk about we need to have these conversations. I just did the minor one of my before you go classes this weekend, and somebody had there was one guy that just kept writing things in the chat. And basically I talked to him afterwards, and he had just had his father die, and um, and he had gone through all this stuff. And he's like, Yeah, even if you say these things, they aren't gonna do it, you know. Um, so I've had conversations with him since then, and I think that's the important thing to recognize that having these conversations, and oh, and he was also saying he's having a really hard time with his other his his grandfather, I think I forget some other person, some other family member that we've heard over and over again this happens, that they just don't want to talk about that stuff, right? And he really does know the value of it because he's just gone through it of having these things figured out, and then to have somebody say, I'm not gonna do that. Um, as you said, it's like having the more and more we can have these conversations, and the more we can maybe find ways, baby steps into the conversation to just um and we I've talked about that with people we've talked about, I think, on the podcast too. Just how do you begin that conversation? And maybe it can be simply, hey, tell me a story about what your values are in your life. And then, you know, do you really is that your value when you're not gonna be here anymore? I don't know. There's ways that you can finesse it, but that's true.

SPEAKER_01 17:41

But you know what? So for that, I would say you can't ask them about values because people don't think about that in a day-to-day. Yeah. I think you and I talked about it on our podcast was you to ask them a story about a time when they've experienced a death and how it went and what they noticed. Because I this country does not operate on values. This country operates on like, I'm gonna fly by the seat of my pants, I'm gonna, I'm gonna take you down if you don't do what I say. And then there's like a legal battle, and mom's dying, you know, bleeding out because nobody wants to assume that she's dying right now. It's you know, we've got to keep, you know, last-itch efforts to keep her alive. So it's I you know, I still wish I had a PhD in semiotics because I think semiotics is still really key to both communicating and articulating uh what is important to us. And I would also say, people start thinking about your values and living by them. You know, you say you have a certain value about end of life. Well, then model it for others who might be resistant, right? Talk about it. And if nobody wants to talk about it with you, be the weirdo that gets not invited to the next dinner party. Um, be brave.

SPEAKER_00 18:51

Yeah, yeah. That's so true. I really appreciate that. And I think, you know, that's the what I've talked to this guy about is you just got to um yeah, wouldn't it just tell your own stories? And that's one of the things we talked about too. You can tell your own stories, and um, and that can sometimes lead to having these conversations. And you know, we've got there's other options out there, there's death cafes and there's all these other things that are starting to happen that I think are other ways to get that conversation going. But it's so important that one of the other statistics they said on it, we've heard it before, is only like I think they said one third of people actually have advanced care directives. Right. And um, so people that's a lot of people that are going to whose families are gonna have a lot of trouble figuring out what to do at the end of life. And most of us have dealt with that one way or the other.

SPEAKER_01 19:38

Well, let me just put it really bluntly here for anybody who's listening and thinking about these things right now. Listen, you either are going to have your loved one die in a hospital uh with you know advanced life uh care given to them, trying to keep them alive. You won't get to experience a death that is healthy for you, healthy for them. It's going to be what it's going to be. You either like relinquish the right to a good death or you do the heavy lifting of figuring it out before that happens.

SPEAKER_04 20:10

Right. Yeah. Yeah.

SPEAKER_01 20:12

I'm really kind of like I've had a lot of advanced care director plan these talks this week. And I've learned a lot from from the three that I've had in the literally the last five days. And uh I'm just kind of chagrined and like confused by people's reticence to tell me what they value. Uh although in my father's case, my my dad says, I don't have a lot of money. Please just let me go. I don't, I don't want debt to be incurred for you. Uh I, you know, we went through his finances and he's like, I I'm not gonna have much to go on if I'm sick. We just have to get going.

SPEAKER_03 20:52

Okay.

SPEAKER_01 20:53

Uh so I appreciated that. He values me not having to incur debt.

SPEAKER_04 20:58

Yeah.

SPEAKER_01 20:59

Right? Not families don't talk like that. They're like, mom probably wants to stay alive. Let's like do whatever. And it's like$100,000 later and a and then a$28,000 funeral.

SPEAKER_02 21:09

Yeah. Yeah. So true. That's that's been part of my conversation with my mom also in our putting together her advanced care directive, is is looking at the finances and and how far do you push it? And yeah. And how do you go about these things?

SPEAKER_01 21:24

Well, I had surgery last year, last July 25th, and I just got another bill this last week for$4,000. And I was like, okay, I cannot. If like whatever happens to me, I have to just say no more because it's expensive to die in this country.

SPEAKER_00 21:40

It's so expensive, yeah. Yeah to do anything. And that, you know, one of the things that makes the biggest difference is having these conversations and and figuring out what you gotta do, what you're gonna afford, and how you're gonna afford it. Um, and and we just I'm got this new nonprofit that I've started specifically to address that. And one of the things we're talking about with that is create. Your community, have your little group of people. Um, and maybe, you know, I was just thinking about this the other day. And uh maybe a lot of people already have like a men's group or a women's group or a book club or a spiritual group or a church group or whatever, and that that you can grab that group and say, let's have a death cafe together and start talking about this with that group. And then those people are there and you can create this community that is ready to be of service to you. And that could be a place you find your healthcare agent, could be a place that uh the people like you were saying earlier, Sam, the people outside the family are there to to participate in the end-of-life um care. Uh so I just uh I think that this the affordability is such a huge issue in the United States. It is uh and really something that has to be dealt with. And um there's or not.

SPEAKER_01 22:49

Honestly, people are we have to deal with it. We have to plan for it. It's not gonna be covered by anybody else.

SPEAKER_00 22:55

No. Yeah. I mean, hopefully this nonprofit and its ideas, and there's a I'm not the only one thinking about this, um, can start to spread and other people can start working on how do we make these more things more affordable. Um, I just talked here's here's an interesting thing about that. I was talking to People's Memorial, which is a cooperative funeral home here in Washington State, about how they um they do that. They have a collaborative of funeral homes that everybody who joins up with them, all the funeral homes who join up with them, have to give 15% off and they have to follow a certain set of ethics about how they know upselling, that kind of stuff. And he he said his biggest fear and his biggest worry is that they the only people that they can do that with are independents. Independent funeral homes. Yeah. And the independent funeral homes are being gobbled up.

SPEAKER_05 23:41

Yep.

SPEAKER_00 23:42

So um it's just gonna, you know, maybe a little off the topic here, but in a way, um, it does pr it does address the some of the problems that people are gonna have dealing with their people in dementia because they're gonna end up in these homes that are corporately owned, all about profit, and are not gonna do anything to take to possibly um have liability, right? That's a lot big, huge problem with these guys. Is that if you know we might have liability, if we stop eating and feeding this person, stop feeding this person, we're gonna be liable and we're gonna get sued, which is likely in this country. Um, or you know, we're gonna go against the law somehow, or whatever. Um, so that again, it's a lot of that is based on the fact that this has become corporate and this has become about money making instead of about care. There's very, very few nonprofit funeral homes, there's very, very few nonprofit hospices anymore. It's just not the values. And it that's where I think you could find people that would be more likely to follow your wishes are the people who aren't into it in it for the money and aren't worried about being sued, if there's anybody like that.

SPEAKER_01 24:49

Yep. Anyhow, great conversation.

SPEAKER_00 24:52

Yeah, yeah. I appreciate you all. Any other thoughts before we say goodbye to people?

SPEAKER_01 24:57

Plan.

SPEAKER_00 24:59

Talk about it. Yeah, have a conversation, get together with your groups, start with your own start with your own stories.

SPEAKER_02 25:07

Like you were saying, that's the easiest road in, probably. And this is not an easy road to to to get into with people. That's right. Oh my god. If you can't even get rid of your own stuff, how are you gonna say, you know, there's gonna be a day when I don't even actually need it?

SPEAKER_00 25:26

Oh yeah, so true, so true. All right, thank you both, and thank you all whoever listening. And please uh subscribe, share, and come back next week for yet another wonderful conversation.

SPEAKER_01 25:40

That's right.

SPEAKER_00 25:40

Adios, adios.