Podcast #96 How Is the End of Life Deck a Conversation Starter? – Lisa Pahl and Lori LoCicero, Co-Creators of The Death Deck

Lisa Pahl and Lori LoCicero met when Lori’s husband was dying, in his 40s. Together, they realized they could create a tool to help families and friends start conversations before it was too late. As Lori notes, “Why are we waiting until that [last] moment to talk about it… that’s when we don’t want to talk about it, that’s when it’s hardest to talk.” We need simple tools to get conversations going earlier in our lives and in ways that don’t feel overly heavy or overwhelming. That’s where the Death Deck and the EOL Deck come in. These two decks, designed with both multiple choice and open-ended questions, can help when we aren’t sure where to even begin.

Learn more at: ⁠Thedeathdeck.com⁠

Transcription:

Diane Hullet: Hi, I am Diane Hullet. Welcome to the Best Life Best Death podcast. Today I’ve got another two guest episode, which I think is really fun. I’ve been having a few of these lately, and today I’m talking with Lisa Paul and Lori Lucero of the Death Deck and the e o l deck. So hi, welcome. Hi. 

Lori LoCicero: Thank you for  having us.

I thought we’d start with just you know, both of you introduce yourselves and talk about how you got into this work and how you came to create this game, the death deck, and then we’ll talk about your new deck of cards as well. 

Lori LoCicero: Perfect. Well, I’ll start. I’m Lori Los Cero one of the co-creators of both the games with Lisa Paul.

And Lisa And I actually met when my late husband was at home on hospice, something that we weren’t expecting in our early forties, but something that, you know, as we know, life throws us curve balls. So we ended up with. The last two weeks and two days of his life on home hospice. And that’s where I met Lisa Paul, who was the hospice social worker that, that came in.

And she was the one that really sort of shepherded me through all of the questions and the oddities and the que this, all of the chaos that comes with that and what we weren’t expecting. And Lisa and I she became my bereavement support person. One of many actually, but one of my favorites.

And kind of guided me through that as well. And during the course of that, we realized that, you know, I was not alone in what had happened and what, you know, what it looks like at the end. So we ventured out to do something about it to create a game, and now games that can help people talk about this stuff so that they’re not so shocked when it happens and 

Diane Hullet: they are better prepared.

Hmm. I love that. How about you, Lisa? Yes, 

Lisa Pahl: so Laurie, Laurie did a great job with our origin story there. And so just a little more background on me. I had my master’s in social work in 1999 from University of Michigan and have worked for over 15 years in hospice. I’ve also worked eight years in emergency medicine, and in both of those positions I.

Have found time and time again that people just aren’t prepared for death. Whether it’s a sudden death or even with a life-limiting diagnosis, we, we tend to push away the thought of death and, and not prepare. And when, when we don’t prepare, it not only leaves kind of a mess for the grievers left behind, but it also limits.

Us being able to have the death that we want because we haven’t had conversations and our family members don’t know what to do. And like Lori’s husband Joe, many people towards, at the end of their life can’t speak anymore and they can’t speak for themselves. And family members end up making quite a few decisions in those last couple weeks of life about things related to How many visitors should be there, how much pain medicine should be present, what they wanna see and hear and taste and smell and all of these wonderful things.

So we created the death deck to help people get the conversation going. And then we created our e o l deck in March to, that’s a little bit more of a specialized deck, 

Diane Hullet: say more so for people who are listening, like by deck we mean literally a deck of cards. And what’s the e o l deck? What does e o L stand for?

So our EOL 

Lisa Pahl: deck is the end of life deck. And so the e o l deck is 52 questions, specifically targeting people with life-limiting illnesses and people of advanced age. So we, we took. Some of the same topics from our death deck and some new ones, and created the questions to be a little bit more sensitive with the thought in mind that these people are approaching the end of their life, and we’re gonna talk about the topic a little differently when we’re close to the end of life.

Then when it’s an abstract. It’s never abstract. We’re all going to die, but it feels more abstract when we’re younger or before we have a, a life-limiting illness. And so the ol deck is, is designed for end-of-life professionals, like hospice professionals, palliative care professionals, people working in senior centers boarding cares, assisted living, and as well as family members.

So you don’t have to be an end of life professional to use the deck. They’re, they’re questions that family members can talk about as well. But we really wanted a tool for the hospice professionals and people coming into the home to be able to help people have the death that they want. And it can be hard to start those conversations.

I know as a hospice social worker, it can be difficult to have those conversations. And and so this is a, a tool to help everyone. 

Diane Hullet: One of the things I love about it is it, you know, it’s like it offers some optional answers and we’ll give an example, but within those answers, there’s quite a range. And then you might find yourself like, no, none of those answers apply.

But this is my answer. So I, I think you’ve done a, an amazing job of just what you’ve said, creating a tool that creates conversation. For example, I loved this one when I was looking through it. On special occasions, how could your family honor you? And I thought this was such a great question because it’s just a way of thinking about our legacy and our family and what we leave behind and what we people will do after you’re gone.

We are gone. So, as you said, a life-limiting illness. So the answers are a lighting, a candle, and sharing a memory. B, visiting the location of my final resting place, or C, bringing family and friends together to partake of my favorite meal. So, you know, someone could be having this conversation and go, well, no, no, none of those.

But it gives them something to react to and respond to. Right. And I think that’s a big way that you’ve designed this. Exactly. 

Lori LoCicero: We love the d answers that aren’t on the card, but people often come up with like, well, it’s none of those, like what you were saying, it’s, it’s actually this. But by having those choices and by asking that question, then it allows to open the door for people to, to, to say those very things.

So yeah, that’s, we, we, we love that. We love 

Diane Hullet: the D answer. I love the dancer, the d e F answer. Another one I thought was super relevant in this day and age was those pesky passwords. Where can we find them all? A says, I have a password manager, but you’ll need the password for that too. B says, oh, grab a pen.

We better write them down now. And C says, oh, I don’t know. My computer remembers them. I don’t. All of which create really good conversation and it’s so important, right? In this day and age I was, I’ve heard some really difficult stories of people who can’t get into their loved one’s phone, and it becomes this really big deal that you can’t open a phone after someone has died.

You lose all those pictures, all the emails, everything that’s stored on there. So love the password, one for spurring conversation. Yeah. 

Lisa Pahl: And the other thing that I really like about the multiple choice questions is it, it does give people these prompts and it gives them a chance to, you know, when, when, when you’re in school, you’re in high school.

Let’s say you have an essay test or you have a multiple choice test, right? We all know what you were hoping your teacher was going to give you. It’s that multiple trace test because you can’t, it’s, it’s very hard to come up. With these open-ended answers, we do have some open-ended questions because we do see a lot of value in, in some of the questions being that nature, especially legacy questions.

There’s not necessarily multiple choice options for everything, but but you know, this is a difficult topic and it’s really hard for people to think about their mortality and their end of life. And so the multiple choice does help. Break some of those barriers and say, okay, we’re gonna make it a little easier of a test for you, a little easier of an activity for you.

We’re gonna, we’re gonna give you some choices and, and you picked the best one for you. Well, 

Diane Hullet: let’s talk about that resistance piece, cuz I think that’s such a huge component for people. And there was a really good quote on your website that I grabbed, which said, From sample questions to poignant stories, they explained the reason they created the game and how they use humor and lively gameplay to break down resistance and open up communication.

And I thought, like if I had to put one phrase on the death deck in the e o l deck, I think that’s what you’re trying to do is to break down resistance and open up conversation. But you’ve both experienced a huge range of this. Why? Why are we so resistant? Well, I think 

Lori LoCicero: part of it ties into what we were just saying about the open-ended and multiple choice.

I mean, I think people are resistant when you say, okay, let’s talk about your final wishes. And it’s like, oh, that’s just so, it’s this big kind of topic, you thing. It’s like, how do I even start? So, you know, I think it’s, if you. If you break it down into those bite size pieces, it makes it easier. But we resist, you know, even sitting down and, and talking about this.

And I think too, we resist it when. We’ve been given a diagnosis when it’s too close to home when a family member is dying. And that’s really why we created the original deck is, you know, why are we waiting until that moment to talk about it? That’s when, when we don’t want to talk about it, that’s when it’s hardest to talk about.

So, you know, we’re very resistant in that moment because it curses it or it’s, it’s, it’s too emotional. So, you know, breaking down resistance with. A tool or a game is what we’re trying to do and trying to break into those moments when it’s not in that crucial moment, like when we’re just talking about, you know, well, a game night, we’re not even talking about death, but let’s talk about it in this, this setting.

Or, you know, when you sit down to do, okay, well we’re gonna get married, so let’s, you know, do our paperwork. So now is a good time. You know, it’s, it’s off in the future hopefully, but now is a good time. So it’s just trying to find those avenues and those places to talk about it when the walls aren’t up.

Lisa Pahl: And, and I’ll add, I think as a culture we prioritize youth and we tend to avoid death. As a topic, you know, often there’s phrases uttered of. Let’s talk about something more pleasant, right? Why are we on this dark topic? This is depressing. Why are we talking about this? And so we’re reluctant to talk about hard things, I think as a culture.

And we don’t wanna accept the fact that we’re mortal. We wanna pretend like if I get this. Nice anti-aging cream. I’m gonna look this way forever and I’m not going to get old and I’m not going to lose my parents, and they’re always going to be alive. And if we just push it away, I won’t have to deal with it today.

But we know that that like most things, it doesn’t work to not just talk about something. There’s consequences when we don’t deal with the things that. That we need to, and whether that’s in a relationship, if you never talk about money that’s gonna be a problem, right? You never talk about your sex life with your partner.

That’s probably gonna be a problem at some point. And and the same is true. You know, we have death, sex, money, as kind of these taboo topics in American culture. And I would say a lot of the world. And Each of those has consequences when we don’t directly deal with them. And we all know that it’s natural to avoid hard things, but, but usually what happens is, one, you feel great when you finally get something done that’s been.

Nagging at you. It occupies this brain space. When we, when I have something on this to-do list that I know I’m just putting off and putting off, off, I, I feel that, you know, and so there’s something really satisfying about checking off the thing that, that you can then feel good about, that you actually dealt with.

And, and I think the other nice thing that happens when we finally have these important conversations is you feel really connected with the person that you’re talking with, because these are meaningful, deep conversations. And while they’re hard, the, the benefit is usually this, this really lovely connection and, and strengthening of that relationship once you get through these type of conversations.

Diane Hullet: I love that, Lisa. I think that’s such a beautiful outcome of this kind of playful deck, is really the intention, is really connection and truth telling and getting to know someone’s wishes. And I think about Barbara Karns, you know, who loves to say classic Barbara Karns end of life educator, and she loves to say people don’t die like they do in the movies.

And I, I, I reflect on that a lot. Like every time I see a death in a movie, I think, yeah, that looked a little too simple. Like really, they were speaking and looking pretty good right up to the end. And in fact, for many, many deaths, it’s quite a process. And as you said, we lose the ability to speak, to communicate, and so it can be too late for these conversations.

So I love that. The death deck is really trying to be upstream, right? Really like, let’s have these conversations when it’s a little more playful and. Easier and just like introducing the topic and then the e o l deck is really, as you said, for someone with a life-limiting illness diagnosis, sense of time, really shortening that.

Then there are these questions that can still be asked and discussed and bring us closer as family members and friends. So the death deck is really active on social media, which I think is so interesting and neat, and I think it brings it to a younger audience, as we said, like upstream. Why do you think that’s important?

Well, our social media 

Lisa Pahl: also brings in education and resources. We, we. Typically post every day and try to bring in, like I said, education additional resources. We use both the E O L and the death deck questions to, to get people involved and engaged. I, I love reading people’s responses and, and hearing how different people have very, very different.

Responses sometimes based on their own experiences, their beliefs, and it’s it, we’ve created a little, a nice little community of people who regularly are commenting and posting, telling their own stories. And so I think one of, one of our purposes of the. The social media aspect of our business is really being part of the E O L community, the end of life community.

You know, we wanna support other people who are doing great things as well. So we try to share a lot of what other people are doing. I. We like to also let people know about the events we’re hosting. We’ve been doing quite a few events here locally in Los Angeles, and so that’s been really fun to be out in the community with people and bringing death into breweries and coffee shops and.

It’s so fun to me to, to be in the presence of other people within the end of life space, and we’ve found that, that other people really crave that connection too. Yeah, 

Diane Hullet: it’s, it’s been interesting for me too. I’m, I’m one of those odd birds who was actually not on. Any social media before starting Best Life, best deaths.

So I wasn’t on Facebook. It’s kind of the height of Facebook, but now I’m really involved with it. And just like you said, I think one of the most interesting things to me is the sense of weaving a community of people who really work in this field and are supporting each other in. Kind of working with death with their clients in new ways and just kind of softening the whole experience.

And so I love both the interactions with other end of life workers and also the interaction with the general public and kind of their surprise and their kind of astonishment that there’s this whole positive feeling or I, I don’t know, I don’t love the word positive death movement cuz I feel like it’s a little too light, but like Sarah Kerr, a wonderful Canadian death doula, says We can do death better, you know, and I, I just love that kind of phrasing.

It’s like I, yeah, I think we can, I really think we can, and I think these tools you’ve created are such an interesting, like, it’s like they’re a crack into a hard topic. And somebody on Instagram the other day had a great metaphor, and I’m kicking myself because I would like to credit the person, but I don’t remember who it is.

And she was having a conversation with hospice nurse Julie, and she said, you know, it’s like death is this ocean that we’re all facing. So do you wanna walk down that beach and be sucked in by the undertow with no preparation? Or do you wanna step off the shore in a boat that you built with your friends and family rowing across to this other shore?

And I thought that was such a good, good, good metaphor. Let me see if I can find real quick who it was. Give her credit. This was Distant Shore’s deaf care who put up that metaphor, and I just thought it was beautiful. Hmm. Yeah. Great. Well, 

Lisa Pahl: distant Shore, that’s a great. That makes sense. Like using the, the beach metaphor with just ensure That’s lovely.

Diane Hullet: Totally lovely. Yeah. I 

Lori LoCicero: love that. That’s a great metaphor. I haven’t thought of it that way, but when you were talking about that too, you know, isn’t, isn’t that a delightful way to build that boat and to, to be able to go off, but for the person who’s transitioning, but then also for the family members that are experiencing or watching the transition.

Is it, is it. So much easier. It is to watch that beautiful boat take off than to watch someone get sucked in by the undertow. So it’s, it’s both for the person that’s dying, but also all of those people around them. I love that that visual. So, 

Diane Hullet: I love the visual, but you know what I mean. It’s like, it’s a great way to explain it.

Yes. It’s an apt visual. Yes. And I think, it seems like, you know, Laura, you had that experience with Lisa. Like Lisa was helping you build this boat for your husband, even if it was too fast, too young. Too unexpected. All the terrible things that make it so, so difficult. The fact that you had someone helping build that boat for you and for him.

Yeah. Is, is just, it changes the whole experience. Indeed. 

Lisa Pahl: Yeah. And I would say that when I, when I go into a hospice patient’s home that has had these kind of conversations where, First of all, they’re talking, they’re acknowledging the fact that they’re dying and so is the family. Step one, which, which there’s quite a few hospice patients, that that first step is not in place when someone comes onto hospice.

Maybe, maybe they’ve come onto hospice, but they they don’t want us to talk about the fact that the person’s dying or the person themselves is reluctant to have those conversations. So, When there is, when people do acknowledge, both the person and the family acknowledges that this person is dying, and there’s been some preparation in place, myself, when I walk into the home, I can feel the difference.

It is not chaotic. It is, it may still be very stressful because there are symptoms to manage and this person is, is dying. However, there is. A much greater sense of there being a plan in place and people being more comfortable and at peace with that plan because they’ve had some time, they’ve done some work already in that way.

And when I walk into a home where they aren’t, haven’t had these conversations or they’re don’t even wanna talk about it There’s, there, there is a lot of chaos and there’s typically a lot of anxiety. And, and that part is really, I mean it’s, it’s, it’s tangible how, how strong the difference is between those two scenarios.

So my, my dream, you know, and my, I wanted to create these decks with Lori is, is getting more and more pupil in that. In that we’ve done the work stage before, before I meet them. 

Diane Hullet: So huge. I’m just so struck because if the acknowledgement is there, then the education can come. Right. Education sounds like such a big dry word, but like the information that helps them settle into the experience and understand more of what’s happening.

Mm-hmm. That can’t be shared if there’s no acknowledgement. So the acknowledgement is really key and then, and then other pieces can follow. Mm-hmm. Let me read one more of these. I loved this one too. I’ll read one that’s very practical and one that’s more mystical regarding your important documents.

Living will, advanced directive, power of attorney. A. My family knows exactly where to find them. B, they’re done, but I’m not 100% sure where I filed them. C they aren’t finished or were never started. Right. That’s so key. On a practical level, do you have your paperwork in place? I know for my husband and I, perfectionism really got in the way of completing documents for a long time, and finally we were like, these don’t have to be perfect.

They just have to be good enough. Mm-hmm. That’s my advice. And then I love this one. If you could communicate with loved ones after you’re gone, how would you show yourself? A as a bird, butterfly, or other special animal B, with specific numbers or objects like pennies or feathers or C with music sense or something else unique.

How did you develop that question? That’s 

Lori LoCicero: the signs from beyond and I get so many of them and I love hearing people’s stories about them, so I love that you could Maybe even talk about it ahead of time. I don’t know how it works, but I just, I love the variety of ways that, that people have that acknowledgement in their lives of signs that people have passed and, you know, if you could choose it.

I love, I love the fact that talking about that, like, if you could, how would you, so 

Diane Hullet: I love it too. It really jumped out at me. Go ahead Lisa. And 

Lisa Pahl: how sweet. I mean, I. If, if, if we, if Lori and I have a conversation about how she’s gonna show up for me after she dies and then not to kill you off, Lori.

Sorry about that. Yeah. Ouch. Yeah. 

Lori LoCicero: I’m gonna haunt you,

Diane Hullet: but let’s 

Lisa Pahl: say she tells me, you know, I’m gonna show up for you in in, in, in pennies, let’s just say. And, and so I, I have, I carry that, that idea around with me and then, you know, after Lori dies and who knows, right? Who knows? So maybe, maybe there is a way. And so a lot of our questions are, have an educational piece, but then some are just like, like this one, right?

This is just beliefs. This is just. Magical, mystical, what we don’t know, kind of questions. And I think they’re all, it’s, it’s always so interesting to me to hear where people go with those kind of things, because usually when I ask someone that question, they start talking about the signs they’ve received from other, their loved ones, right.

Which people typically love to share. But then they, but then we usually get into a greater conversation about their beliefs, about afterlife and if they can have a hand in putting things in front of people. And then it just goes in and then it’s an hour later and we’re still talking about that 

Diane Hullet: question.

Totally. That’s what I was thinking with that question. I thought that in of itself would lead to so many stories around a dinner table. For sure. For sure. And 

Lori LoCicero: how often do people ask about that? Like, that’s the other thing. So it’s, it’s something that people, I think, want to share. A lot of times they don’t know how to break into that conversation or, or share something like that.

Maybe they’ve experienced it, but with a question like that, then it’s, it, it opens it up. It’s like, here, here’s a, here’s an open forum. Here’s some space and share 

Diane Hullet: away. Right. And here it’s in the deck. Like this is part of, this is part of the lexicon, part of the language around end of life if we let it be, or someone could say, oh, I don’t wanna answer that question, you know?

Okay. You get to go back to the will question and answer that, you know, drive 

Lori LoCicero: Right something for everyone. 

Diane Hullet: Something for everyone. I love that. Well, thank you so much Lisa and Lori. I just love, you know, my whole. Shtick with Best Life, best Death is just how do we have conversations about this and how do we have them before?

We need to have them, before we have to have them. And I think that’s where we just, you know, really enjoy each other’s approach to this conversation that more and more people, I think, are stepping forward to have and could be having more frequently and earlier than they do. I can think of like six more questions, but I think we should probably stop.

Thanks so much for your time. Like my brain went off on these tangents when I said that. Thanks so much again to Lisa and Lori, founders, co-founders of the Death Deck and the E o L deck, and tell people where they can find out more about you and get hold of your decks. You can 

Lisa Pahl: find out more about **@th********.com and you can follow us on all social media at the DEF Deck.

Diane Hullet: Awesome. Thanks so much for your time. You’ve been listening to the Best Life Best Death podcast, and I’m Diane Hullett, and you can find out more about the work I do at Best Life. Best death.com. Thanks for listening.