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Who Speaks for You? · The Long Run

• speaker-0: All right. So my mom's birthday is coming up and it's it's kind of like a big number. And we're having a lot of family conversations about what to do, what does she want? What does she not want? Everything from a concert to theatrical production to a scavenger hunt to a magic show has kind of been thrown out and everyone has different opinions. I think we're landing in a good spot and hopefully it'll be a joyous birthday for my mom. But I think it ties in nicely to the conversation we're gonna have today because if we're struggling so much to plan a birthday party, there are much more important and heavier topics to to talk about. So Anna, I I I think we've spent a lot of time thinking about this, but who do we have coming on today and speaker-1: What are we going talk about? Yes. So we have Dr. Brian Carpenter coming out today. And I'm really excited to talk to him because we're talking about that conversation that nobody wants to talk to. Who would speak for you if you couldn't speak for yourself? Which most people can answer that question in under a second. And then when did you last tell that person anything about what you want? Which most people can't answer at all. And you're right, the conversations that we have in Planning and celebrating big events like your mom's birthday can be challenging. And thinking about those conversations that nobody wants to have are that much more. And it's a tough conversation. I and I'm excited to hear what he has to say and excited to learn more. We've navigated these conversations within our own family before my father passed and when he passed. And we're having them again now with my mom. But again, it's It's hard to get right and I'm not quite sure what is the right way. speaker-0: All right, well maybe Brian can help us today, so we'll we'll see what we learn and excited to have the conversation. Well, really excited to be joined today by our guest. Our guest today is Dr. Brian Carpenter. He is a clinical psychologist at Washington University in St. Louis, where he co-directs the Friedman Center for Aging. So Brian studies conversations with families about what matters in later life, who gets asked, who gets heard, and what helps those conversations all go well. He came to this as a clinician first, training in VA hospitals and geriatric centers. So his questions start. in real rooms with real families in them. We tend to think about this kind of planning as something for the end, but today we're going to ask the question if it belongs at the start or much earlier while you're healthy and the choices are clearly your own. So with that, Brian, pleasure to have you here today. Thanks for joining us. Thank you for inviting me. I'm excited for the conversation. Great. Well let's start. there's lots of tough conversations that families have, and talking about aging seems Especially complicated and challenging. And curious, what got you into that field? what drew you to taking on that challenge for your work? Well, I've always been interested in older adults and aging. And one of the things that's great about working with that group is that they tell great stories and you learn a lot about history, you learn a lot about a change. And you learn a lot about what's unexpected in life. And if you listen to enough stories by older adults, sometimes they will tell you about things that went well in their life and things that maybe they had wished had gone differently or that they had done differently in their life. And sometimes those themes focus on regrets. Decisions that they wish they'd made, conversations that they'd wish they had, plans that they wish they had put into place before their life took a turn in an unexpected direction that brought to the front the lack of preparation, lack of planning, lack of comfort talking about difficult things with people. So I think over time I heard enough of those stories that I got curious and interested in trying to figure out were there ways to help. people think about and have these kinds of conversations sooner rather than later, would we be able to help forestall some of the difficulties that people have later in life by helping them feel better prepared? speaker-1: So Brian, we've been saying the word conversation a lot. What is actually involved in these conversations? What conversations are we talking about when we say end of life, advanced care planning? speaker-0: We are talking about how you would want to be taken care of if you ever had a serious illness and couldn't express your own wishes. And by wishes wishes for health care, but maybe also wishes about how your finances and assets will be handled, what will happen to your body after you die, your wishes for those practical things. And more broadly, a conversation about your values. what drives those wishes? Why are these things important to you? Those are more abstract and a little bit more broad, but they lead to specific preferences and wishes. And that's what we're hoping people will talk about. speaker-1: So it's more than just I wanna be cremated versus I wanna be buried. speaker-0: Yes, it's that, but more because we we want people to have a deep understanding of what drives those kinds of very specific wishes. Like, well, why do you want to be cremated? Why do you want to be married? Tell me more about what's behind that wish. speaker-1: Amazing. And when we think about those conversations and what we learn from people as they talk to us through stories and their life and their experiences, the topic surrounding death and how they want to go through it, as it is the great equalizer, it's always slightly different. And When we talk about those decisions that get made in a hospital at the end of life, anytime we ask anyone who will speak for you, if you can't speak for yourself, almost nobody can tell me the last time they said anything to that person, but they can immediately tell me who that person is. And that's really the prompt for this episode. Why is that gap so consistent? even in people who are otherwise completely organized. speaker-0: Well, you you led with the with with the the primary reason and that's because people don't like to think about the end of life. People don't like to think about dying, you know, the process of the process that we all go through, because it can be uncomfortable. and they also don't like to think about the outcome. Yeah. We talk about dying the fear of dying vers being being different than the fear of death, because some people have a really strong fear of dying. They don't like imagining what it will what the process will be like that they go through. And other people are fine with that, but what they fear is non-existence. The fear for them is the fear of not being alive anymore. But both of those things can be at work for people and both of those things can be a barrier for people being willing to to to talk and think about death. Just the idea of it is hard to get your head around. People don't want to Think and talk about it because they're afraid it will be depressing to them or people around them. Some people think in a morbid way, well, I'm not going to be around. They'll have to deal with it. So why do I need to worry about it? But for a variety of reasons, I think the underlying theme is that people have a hard time thinking about it and accepting their mortality. Yes, you're right, Jana, it's going to happen to everybody, but somehow people have the ability to think to themselves, well, it's not gonna happen to me or it's not gonna happen to me for a while. speaker-1: And it's interesting you speak about the stress of it because even as we're talking about it, I myself am starting to feel a little bit of stress rising in my body, which, as we know from psychology, is often a protective factor. But in some cases, that's a burden or can be a detractor from doing things that you really should be doing. From your research, what are the drivers that can expand or even minimize that gap? between knowing who you want to speak for you if you can't speak and actually having a detailed conversation about what you want. speaker-0: Well, I hope we'll have a chance talking about that that choice that people make about who the person is, because there's a whole lot of important things to think about around that choice. I think in terms of the factors that can make it easier for people to to contemplate those things, one is simple experience that once people have had the opportunity to see someone with a serious illness or know someone with a serious illness or hear about somebody with a serious illness, it can bring it to the fore, it can make it more apparent to people that this is an important conversation to have. And, you know, I mean, the full spectrum of that experience. Sometimes it's people who watched a grandparent at the end of their life or another relative or family member or a close friend. And they saw an either an experience that was admirable that they thought, yeah, that that went well. Or they see an experience that was not what they would wish for themselves. and they want to avoid that. So it's those kinds of experiences. But also sometimes for people, it's like hearing hearing a a story in the news about a famous person, a celebrity, athlete, or somebody else who's famous, who went through an end-of-life experience. And we learn from that too. So I think experience is good for all of us because it reminds us that this is true, reminds us that it happens to everyone, and that other people managed to get through this. So maybe I can do the same thing. Yeah, absolutely. A a word we often hear and when thinking about having these types of tough conversations is like, well, I don't want to be a burden. I don't want to be a burden to my kids, to my family. I'm planning my retirement to kind of avoid all of this. So why do I need to have a conversation? My job as the parent is to to protect everyone. So I'm curious your perspective on if that's fair and true. Like does not having the conversation actually reduce burden, or is there another unintended consequence of that type of mentality? It can reduce burden. You know, if people are taking all of the steps that we think are important, then yes, it can mean that that that you've got your ducks in a row and that you've thought things through and Your wishes are clear and so that when the time comes, there will be plans in place. And that can certainly reduce the burden on people, both the psychological and the practical and financial burdens on people. But sometimes people think that all of their planning really is enough to account for every unexpected situation that might arise. And that's where people get into trouble because they as as As much as you can plan for every possible eventuality, there's going to be some surprise around the corner that you didn't anticipate. So I think it's more useful for people to think, not in terms of, you know, can I nail down every possible thing and plan for it? Do that to the extent that you can, but also have conversations with people so they know what's important to you. in the off chance that some situation comes up that you didn't anticipate or didn't talk about directly or didn't plan for. You want people around you who know you well enough to be able to guide your care or the end of your life or after your life in a way that's consistent with your values. And the only way to be sure that that's more sure that that's going to happen is to make sure that there are people around you who know what you want. Yeah, absolutely. that's great perspective. I I think there's another related kind of emotion that factors in here that, I I'd love to get your take on, which is fear. I think about and tough conversations or even big conversations that I've had in my own life, thinking about when I asked my father-in-law for his blessing before I proposed to my wife, I procrastinated on that conversation for a number of days, if not weeks, and missed opportunities. And and once I had it, I felt great. It was Good conversation. Everything that I thought would go wrong did not. And I'm curious, like in your research, what happens when people actually have these conversations? What is the outcome? What it what do you typically see? And specifically accommodating that kind of question of the fear that goes into this? First of all, the fear is real and true and honest. And so we, you know, you don't want to like squash that or pretend it doesn't exist. And in fact, that fear can be important. It can be a signifier that, Yeah, there's something here that I should be paying attention to, or there's something about this topic or this issue or this conversation that's meaningful to me in some way. Yeah. So it's worth acknowledging and respecting the fear. On the other hand, you don't want that to get in the way of you moving forward and having the conversations that are important to you. And in my experience, most of the outcomes are not what people expect. That they the The fear of about the conversation being dark or unproductive or depressing or sad or upsetting, that mostly doesn't turn out to be true for people. Not that the fear was unfounded because it's real, but I think in retrospect, people will say, yeah, I was a little afraid to bring this up, but once we had the conversation and got into it, it wasn't as bad as I f thought it would be. And by the end of it I really learned something valuable. speaker-1: So something that I've heard frequently when I've tried to broach these conversations with different family members, my own in-laws, is the phrase, well, you know what I want. And sure, I know how Uncle Pat likes his beef sandwiches. I know many things about my mother and father-in-law, but I'm not sure I do actually know what they truly want towards the end. of their life or if they can't speak for themselves. And I know you've done some work comparing what older parents say about their family with their adult children and what their adult children would say about their same family. How much do their accounts actually agree or disagree? It is you've known me my whole life. We don't need to have this conversation. Is that a valid argument? speaker-0: Well, people are human beings. They're not singling anybody out because this is a f universal phenomenon. And people tend to be overly confident in what they know. They think they know a lot of things. And but then when presented with the evidence, it turns out that they don't. And that's the case in this scenario as well. The people assume they have some degree of knowledge about the people in their lives. But time and time again, when we actually look at real data and compare what you think you knew with what the other person might tell you. People are sometimes no better at chance at guessing what the people in their lives are would say. So we like to think that we know these things, but the reality is that we often do not. And that's not true across the board. There are some people who are very knowledgeable about each other who've been having conversations or very sensitive and kind of read people and have gathered information along their live to know people fairly well. But for the most part, I wouldn't count on it. Yeah, I agree. And and I think the the question isn't like, you know, how well you know someone, it's it's how do you kind of navigate these conversations. So I'm curious getting more practical, what type of advice do you give to families when around how to conduct this? Is it a single conversation? Is it multiple conversations? Is there structure of how you start, how you finish? Would love to kind of know what you've seen most successful when people are recognizing that there needs to be conversations. How do you get started? Yeah. First piece of advice is go slow. you you want to maybe pitch the idea and then let it sit. Cause not everybody's going to be even open to the idea when you first raise it. So we often advise people, just bring up the idea of the conversation and then just let it sit. And then maybe come back to it, especially if you feel like you're getting some resistance from people up front. sometimes you can start that conversation by saying, pointing out something that went on in your family, I was just thinking about how Uncle Fran, Unc Uncle Francis died. And I wouldn't want that to happen to you or to me. And maybe we should talk about that sometime. Or, you know, gosh, there was a story in the news last week about this person who had a really beautiful end of life experience. Would really want that for me. Can we talk about that sometime? Or or even sometimes people will say, Hey, I listened to this, this it's interesting podcast where this professor told me we're supposed to be talking about end-of-life stuff. I I don't know, but he said it was important. Maybe you can blame me, basically, is what I'm telling you. So start out slow. And the other important point you brought up, Andy, is that these these are not supposed to be one and done kinds of conversations. this is And you don't have to tackle the conversation like whole hog and get it and imagine that you can get everything settled in one conversation. These are the kinds of things that you should talk about a little bit at a time and it should unfold over over time. In fact, people's preferences and wishes and values, they can change. And so even if you've done if you've had good conversations and even put your all your important documents in order, it's important for people to revisit them from time to time because you learn new things, you have new experiences, your perspective shifts in life. And so things might change. And you should expect that things might change in other people people's minds in your life too. So don't assume that your wishes are going to stay stable. And don't assume that their wishes are going to stay stable either. Yeah. As you're as you're speaking, I think there's like there's so many kind of annual rituals that we have kind of ingrained in the way we kind of navigate big things. Like We're supposed to see the doctor once a year or meet with a financial advisor if we have one once a year. And there's all these things that are built in as rhythms. And I I as you're speaking, I'm thinking about how that could be applicable to even these types of family planning conversations. We we might have our family reunion once a year, but we're not having these types of conversations like embedded into that. That might be a really interesting way to approach it. Yeah. And speaking of those rituals, You wanna be judicious and thinking about whether those family rituals are the right time to bring up this particular topic. some people will say, well, my family's all gonna be together for Thanksgiving. Let's all sit down at the table and talk about our our deaths. That might be right for some families, but maybe not the right context for most families. So you gotta fair point. speaker-1: Yes. It feels like a bit of a sitcom. But as you were talking about thoughts changing, that really resonated with me even just 10 years ago. I remember being younger and being like, Yes, I find a lot of security in the hospital, but now my wants and desires have changed and I'm very much more comfortable in my home. So if you have this conversation with your family, how often Do people's wishes actually change? How often should we go back in and update these conversations and plans? speaker-0: The markers where we see the most change in people's wishes is a when there's been some sort of life experience or life event. You know, that there's been a they they've had a change in their own health status, change that they've observed in somebody else's health status or health experience, life change like maybe change in your marital status or partnership status. Those are important life moments that sometimes trigger a shift in people's preferences and values. So those are all good times to reflect, you know, hmm, what did I write in those documents? Or what did I tell people? I think I think I feel a little bit differently about it now. Or or maybe those people that I wanted involved in those decisions are different now than they were when I first thought about those people. So those kinds of life transitions, shifts, are usually a good cue that, hmm, maybe I want to revisit this stuff. Yeah. There's an there's another kind of life transition or shift that is less able to be predictable, right? It's a moment of crisis. And, you know, my observation is that often these types of conversations, when not had in advance, come up in these moments of crisis. There was a a fall or there was you know, some other kind of incident or diagnosis. And now you're having all these conversations. And I'm curious from your both experience and your research, what does that additional pressure of kind of having those conversations in a moment of crisis have on on the families and the decisions that they're making in that moment? It makes it more difficult for two reasons. that you that you alluded to, Andy. One is that there is some time pressure. So n often these are decisions that need to be made relatively quickly. So there's not a lot of time to reflect, to slow down, to gather information, to think and muse and pray and journal and all the other ways that we try to clarify things in our minds. So time pressure is one disadvantage. And the other disadvantage is the emotional intensity that often accompanies the crisis and We know that human beings are, we try to be rational, but we're not the best at weighing pros and cons, taking in information, coming up with a solution when we're distracted by strong emotions. And so those two factors make those decisions particularly more challenging for people. People still do it because the situation demands it. But there's I think some greater risks of misalignment because of those things. speaker-1: It's interesting that you bring that up because it's something that I've experienced myself a few years ago. My husband was diagnosed with cancer. Suddenly we were in our early 30s. And all of a sudden we had to have all of these conversations within the span of a week before he went into surgery. Happy to say he's now cancer free and we've since gone back. But I I think back to that week where we were making all of these decisions and I come from an occupational therapy background. I'm familiar with these conversations, but it was still very stressful. And, you know, we were only in our early 30s. So, you know, that brings me to the question sooner rather than later. Is there ever such a thing as planning too early? Like how early should we be having our com these conversations? Should we be in our twenties, our thirties, our forties. speaker-0: We should be doing it right now. In fact, you should just I should just log off this podcast and we should just all go do our advanced care planning right now. Joking, but not joking, really. Death can come to people at any age. Serious illness can befall people at any age. Life accidents can happen at any age. So in that sense, I don't think it's ever too early to to have these conversations and do some planning because Why not? Why not have the security and the comfort knowing that if anything happened to you, and it's unlikely, but on the off chance that it does, you've had the conversation, you've put plans into place. I often teach first year college students about end-of-life issues. And my message to them is hey, you know, you're not. You're not a superhero either. I don't want to scare them. And they're gonna have a good long life, I hope. Sometimes they need a little a little fear put into them though. speaker-2: the speaker-0: So yeah, I think it's never too early to be thinking about these things. speaker-1: So getting to the nuts and bolts of the conversations that we're talking about, you did some intergenerational work where families are going through these conversations together on their own, not in a clinic. What did you actually find that helped? speaker-0: Providing a little bit of structure is what helped. And so we put together a little guide to help people through the conversation, giving them some tips about like, okay, how do you plan for this? How do you bring it up? Who d how do you think about who you who should be in on the conversations? Where should it happen? When should it happen? What do you need in front of you to make it easier? So providing a little bit of structure can be helpful for people. And there are several really good organizations around the United States that have resources available to help people have these conversations. So providing that structure, I think, is very helpful for people and reminding them that it doesn't have to be this hours-long, deep, dark conversation, that it's okay to break it up into chunks. And it's important that after you've had the conversation, that there's some follow-up that we recommend. So kind of laying out the structure for people is is helpful for people, but also reminding them that this isn't this doesn't need to be dark and it doesn't need to be final because you can come back and talk about these things in the future. You know, our goal ultimately is to just to make sure that people have plans in place and conversations had. But our our other equally important goal is just to help make people feel more comfortable. feeling like, yeah, I can talk about these things and it's not gonna freak me out or wig me out. Yeah. And so building that skill set, building that sense of confidence and competency i is another important goal. Like reminding people, yeah, you you can have these conversations and they'll go speaker-1: So what's that opening line so it doesn't feel like you're getting terrible news from your physician? How how do you sof soften the blow is not the right phrase, but how do you make it a positive experience? speaker-0: I want to sit down and talk with you about what's important to you because I care about you. it's it's really about, you know, you care about people, you love people, you you they matter to you. And so I think that's the lead. You know, that's the message. Like I I I love you and I wanna make sure that I that if I'm ever asked to take care of you, I can do it in a way that's gonna feel good to me and you. Or if you're ever in a situation where you need to take care of me, I want both of us to feel good about that. speaker-1: Hard to argue with that. speaker-0: people will, but but harder, yes. speaker-1: What if it's the reverse? What if it's the parent coming to the child? Or even the reverse and there's deflection? Don't talk like that. We don't want to risk anything. How how do you navigate that deflection? speaker-0: I think a a similarly disarming perspective is to say, I I will you do some will you do something for me? I value our relationship and here's something that's important to me. And will you join me in in having a conversation because it's important to me? That's powerful. How how do you advise like, you know, everyone in families has roles, right? And sometimes it's associated with kind of your birth order, like the oldest child or the daughter or or this and that. But but I'm curious like how do you Help prepare families to have high friction conversations, acknowledging that those roles may be in place and may have come deep rooted emotional attachment tied to them. what's the general structure that you'd provide there? Mm-hmm. First, acknowledging that everybody is going to have an opinion. And all those opinions are valuable and they're an important part of the mix. And so you want to make sure that your conversations are as inclusive as possible. You know, we try to encourage people. to have when you're gonna have this conversation and let's say you've got relatives who are overseas or, you know, not close by, think about how do you include them, you know, either on the phone or virtually. Everybody needs to feel like they're they've been they've been included in the conversation. So that's the first important step. But then I think it's fine to acknowledge that some people have certain skills in the family or certain roles in the family and and kind of talk about them out loud, if you've got a if you have a relative who's a financial planner, why wouldn't you choose that person to be your power of attorney for your finances? Well, maybe you wouldn't because you don't think they're a very good financial planner. But maybe they have some skills and some backgrounds that that would help them take on a role. Or in a more abstract way, you know, if you've got somebody in the family who Who is everybody recognizes is a little maybe maybe more level headed, can kind of like not get too emotional. Maybe that's the person who should ultimately make final decisions. So acknowledging those roles is important, but in the same context, letting everybody know that their that their their opinion matters and that they need to be heard. Because if you haven't done that groundwork, then at the d time that a decision needs to get made. those dynamics will come out in spades and it will be much more complicated for families to navigate the decisions in front of them. Yeah, absolutely. You you mentioned power of attorney, which just got me thinking about paperwork and documents that can sound super scary and people don't know what they are. So maybe we could just spend a minute and you could help us in plain English define a couple of these like what is a advanced directive? What is a healthcare proxy just so we have a A an understanding of those things, not maybe not being so scary. That's great. Yeah. There's a lot of kind of jargon that gets thrown around. So the the what we've been talking about so far today is a process that in the healthcare field they talk about as advanced care planning. Advanced care planning. Basically what that means is that you're getting ready for the possibility someday that you may not be able to make all the decisions for yourself if something happens. So we're we're encouraging people to engage in the process of advanced care planning. Part of that process is the conversations that we're having about. It's reflecting on your values and what's important to you. So being clear in your own mind about what's important to you, and then communicating that information to your family members, your friends, your physicians, whoever might be involved in taking care of you if. you ever were in a situation where you couldn't direct your own decisions. That's an important thing to to to point out is that what we're talking about are plans that will only go into effect if you're in a situation where you can't speak for yourself. Some people are worried that they fill out these documents and what that means is that they've given up control of your body and your finances. And that's not true. These are documents that only come into place when you're not able to speak for yourself. Those documents, there's there's a set of documents that are important. One is called an advanced directive. And that's used to be called a living will. We don't really call it a living will anymore, but sometimes you'll still hear people talk about a living will. And that's a document where you can explain how you want to be taken care of if you couldn't make your own healthcare decisions in the future. So it allows you to talk about specific treatments that you would or wouldn't want. And it also gives you an opportunity to talk about things you value in those decisions, how involved you want to be in decisions, how much deference do you want to give to your healthcare providers versus other family decision makers? It really lets you kind of spell out here's how I want you to make decisions for me in the future. A companion piece of your advanced directive are some legal documents that let you choose the person or people who would make those decisions for you. So if you were never, if you weren't able to make those decisions for yourself, who would step in to make those decisions for you? And those documents are called powers of attorney. And there's two of them. There's a power of attorney for healthcare. That's the person or people that would make your healthcare decisions. And there's a power of attorney for finances. That's the person who would make decisions about your financial resources and your assets. They could be the same people. They could be different people, depending upon, as we talked about earlier, maybe somebody has one s set of skills in one area versus another. So those are the documents that need to be filled out. It doesn't require a lawyer to fill out any of these documents. You can fill them out at home. The thing about the power of attorneys is that they do need to be witnessed and notarized in most states, but otherwise you don't need to involve a a legal professional to fill out these documents. So those are the kind of that's the kind of bare bones in terms of the documents. Yeah, super helpful. And they are sometimes very they fluctuate from state to state. But there's also some versions of these documents that are accepted across all states. speaker-1: So digging into a little bit on these documents in terms of the purpose, something I've heard frequently is, well, I don't need to fill it out. I don't want to go anywhere at the end, just put me under a tree and give me a blanket and I'm good to go. Why isn't that good enough? Why do you need the structure of these documents? speaker-0: Two reasons, well, at least two reasons. One is that you nobody can really predict what circ the circumstances of the end of their life might look like. So you're without articulating your preferences and the people to make decisions for you, you're kind of leaving things wide open for a lot of unanticipated possibilities. And that might mean that if the if you you know, if your true wish was to be left under a tree, and you know, that that could be reasonable. Even that might not happen unless there is some written documentation that you want to be left under a tree. If you want to be left under a tree, fine. But you better write that down so that and talk to people about it so they know that you want to be left under a tree. You have me thinking about Shell Silverstein and the giving tree right now. That is what popped into my head. Yeah. So I this I think that's one of the reasons why it's important to have these things filled out. And the other the other important reason is that. Even though you hope the people around you would cooperate and collaborate and play nice when these decisions need to be made, that doesn't always happen. And so if you have not expressed your own wishes, then you're setting up the people around you for potential really uncomfortable disagreements. Because, you know, then who gets the final say? Not you if you haven't expressed your wishes. So if you really if you really want people to do what you want, you need to write that down. And that that means that you've basically told people, Yeah, you can't fight over this because look, I I this is what I said I wanted. so do what I said. Cool. Yeah, as we as we kinda wrap up this conversation, we we've covered a lot of of ground here. And I'm curious to hear your perspective or maybe even a story of what it looks like when When things go well, right? Is there a a family through your research or experience that maybe started with some of these challenges we've talked about? And and what was the outcome? I think it would be great to hear such an experience. Mm-hmm. Yeah, I can think of one family in particular where the the family was a widowed mother and her two sons. And they were probably in their forties when the sons were in their forties when we met them, and the mother was in her seventies. Her husband had died several years prior. And the family was interested in trying to learn about how to be better prepared because they'd seen the husband in the in the in the family go through a really difficult time and they realized we had we didn't know what we were doing. The problem for this family is that one there was an older son who believed that he knew how to take care of everything, knew what his mother wanted, and was pretty confident. in his knowledge and the younger brother was not so sure about his own knowledge and his older brother's knowledge. And the mother was kind of hands off. She was, you know, very deferent, deferential towards her son. So they'll take care of me, they'll figure it out. I don't need to worry about we shouldn't I don't need to talk about this 'cause I trust them. I'm sure they'll do the right thing. But it was the conversation was kind of advocated for most strongly by the younger brother. who was like, things didn't go so well with dad. I don't want us to have to go through that again. So he really pushed for this conversation with the family and and they kind of, you know, using some of the tools that we have available, we kind of pointed out to them that maybe you don't know as much as you think you do. And that the mother really did have some opinions about what was important to her and what she wanted to have happen to her. When she was given the space to talk about them openly. And so that family, walked out of that conv that initial conversation with a new degree of insight. They also felt more confident in their ability to have subsequent conversations about this. And they had a plan to move forward in terms of kind of filling out these documents that they realized were important to have into place. speaker-1: So before we wrap up, I know you had mentioned there are quite a few tools and even questionnaires and packets that can help support families in this. Are you able to share what some of those tools and resources are so we can share them with our listeners today? speaker-0: You bet you bet. You bet. I have a couple that are my favorites, but these are just my favorites. There's many, many out there. And that the the you can find a lot of all of them on on the internet and more. One of my favorite resources is put out by a nonprofit called the Conversation Project. And you can find their website easily by searching for them online. They have a great starter kit, which is designed to help people start the process of having a conversation. So they have lots of tips. about things to say, things to think about, how to organize a conversation with people, how to get your own head straight about what's important to you before you have those conversations. They have tons of great resources. So I wouldn't encourage people to check those out. Once you get to the point where you're ready to kind of put pen to paper and document your choices, there's a great website that I send people to called Prepare for Your Care. And that's a website that allows you to enter information online into a document about what's important to you. And then you have the ability to print that document out, sign it, have it notarized. And in depending upon the healthcare system, there are some systems that will allow you to fill out that form online and then have it automatically loaded into your electronic medical record. So another great development to help reduce the barriers. Finally, I'll say that AARP also has a collection of s resources by state for people who are interested in doing their advanced directive. And each state's bar association will also likely have copies of these forms that you can fill out. Great. Yeah, that's awesome. We'll we'll definitely have links available in the podcast according to our listeners to kind of be able to access all these documents and more. So thank you for that, Brian. speaker-1: And our last question, so this is one we ask everyone. So you've spent twenty-five years studying how families actually do this. What does your long run look like for you from here? And what do you do differently because of what you know? speaker-0: My friends and family members probably think I spend too much time thinking and forcing them to talk about the end of life and death. I don't mind being known as that guy, you know, who's talking about these kinds of issues because I think it's important. I think recognizing your mortality brings a lot of benefits to your everyday life. So I don't mind being that guy. And I think moving forward, I'm looking forward to Exploring more ways to help people feel comfortable having these conversations. They can start out small. One of my favorite new developments on the scene, perhaps you've heard of the Death Cafe Movement. These are meetups that happen in almost every city around the country and around the world. They're informal, you know, organized by just everyday people who get together because they're interested in. Talking about some aspect of death. They usually meet up, there's no agenda, no speakers. Whoever shows up at the coffee shop or the bar once a month just wants to talk about this really interesting phenomenon that we're all gonna experience someday, the pinnacle of our life in many ways. So it's grassroots initiatives like that that that I think are really gonna move things forward. That's a very cool note to end on. Brian, we appreciate you spending some time with us today, sharing all of your experience and thoughts and advice with us. Very practical, very important conversations to be had. So thank you. You're welcome and thanks for the invitation to to talk about the thing I like talking about so much. Alright. speaker-1: Well, I definitely feel better about having that conversation. I was definitely nervous coming into this, but I feel much more relaxed and ready to have these conversations that are just that much harder to have. speaker-0: Yeah, absolutely. I think something that stuck with me and it's it's so intuitive when you hear it, is just like the idea of taking it slow and and letting it breathe, letting being able to be comfortable kind of seeding a conversation versus you have to tackle everything at once. Cause I think all too often with any type of conversation, I I get stuck in this world of thinking I have to kind of accomplish all my goals in one short amount of time. And so that really stuck with me as having a structured process, one kind of navigating any challenging conversation, but specifically conversations around end of life, family dynamics really stuck with me. So hopefully you can take something away from this episode. There's gonna be a range of topics that we cover as we get further along the long run. And we'll keep going. speaker-1: Yes, no, I totally agree. And I think something that also brought me a lot of comfort that I didn't know was all of the tools that are out there because going in and having these conversations at your kitchen table without support seems very daunting. So it's nice to have a little support system to bring with me. speaker-0: Thank you again for listening to The Long Run, a Neverstop Podcast. You can learn more about Neverstop at Neverstop.com, and we will keep bringing interesting conversations your way. The views expressed by hosting guests on this podcast are strictly their own and do not represent the official position of Zured Inc. Content is for general information purposes only.