Why Conversations About Death Matter

Episode 15 August 21, 2023 00:28:15
Why Conversations About Death Matter
Purposeful Planning Podcast
Why Conversations About Death Matter

Aug 21 2023 | 00:28:15

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Show Notes

Lori LoCicero and Lisa Pahl are the creators of The Death Deck, a card game that explores
death and dying using multiple-choice questions and a dose of humor. The two describe their
personal and professional experiences that led them to create a tool to open end-of-life
conversations. They share why conversations about end-of-life preferences can be just as
important as the paperwork. Lisa and Lori provide tools participants can use to engage their
clients in these meaningful conversations.

Introduction to Our Speakers:

Lisa Pahl is co-creator of The Death Deck, a lively and humorous card game that inspires
meaningful conversations on what matters most in our lives and in our deaths. As a Licensed
Clinical Social Worker with over fifteen years of experience in hospice and emergency medicine,
Lisa helps people cope with illness, dying, and grief. With a passionate belief that peace at the
end begins with meaningful conversations over time, Lisa engages people in talking about and
preparing for this important stage of life.

Lori LoCicero is a freelance writer and co-creator of The Death Deck. A creative storyteller and
eternal optimist, Lori combines her personal stories of loss with her innate sense of humor to
write about life and talk about death. She has written and directed independent films,
documentaries, and a variety of live gala events. Her upcoming memoir offers readers an intimate
look at loss and her discovery of post-traumatic growth and was the catalyst for creating The
Death Deck.

You can find out more about Lisa, Lori, and The Death Deck at thedeathdeck.com.

View Full Transcript

Episode Transcript

JOHN A: I want to welcome everybody to the Purposeful Planning Podcast. This is John A. Warnick, founder of the Purposeful Planning Institute and joining me today are Lori LoCicero and Lisa Pahl. Lori and Lisa have been with us before. We're very grateful to Stephanie West Allen for having kind of found them and made me aware and then kind of brought them to the PPI world. They did a webinar for us about three years ago. And Lori and Lisa, before we dive into today's topic, I'd love to let each of you share the journey that you've been on. We call them professional or purposeful Odysseys about your stories of how you've been attracted to this work and where it's been taking. LISA: I'll go ahead and start. So I'm a licensed clinical social worker. And initially, in my work, I was working with community mental health and domestic violence, and I found myself going to get burnt out in that field and decided to try something new. And that's when I stumbled into a home hospice where I have been for over 15 years. This is where I found my passion in life helping people to live and die well and helping guide people on their final stage of life. I also was fortunate enough to have about eight years of Emergency Medicine, social work, kind of concurrently with my hospice career. Which has helped me understand medical crises and sudden death in a different way which I think continues to give this wide range of understanding of how people die and in the struggles that we have when we don't prepare. And that's how we began this project. And this purpose of ours with the death deck and our new ELL deck is through the idea that if we can get people to be better prepared.. There will be not only a more peaceful death but also the loved ones left behind will have an easier time picking up the pieces. JOHN A: Thank you, Lisa. And I should have mentioned the death deck — I know you're going to talk about the new kind of product you bring into the market as well. Laurie — let's hear your purposeful Odyssey story also. LORI: Well, this was not a place I ever thought I would be in the end of life space as a game creator. I come from a background of film and television production. And this all came from the unfortunate death of my husband who had pancreatic cancer and ended up in hospice. But before that, we were on a track of creating shows and books together. We had just started a family who have fairly young children and you just never know when life will throw you that unfortunate curveball, which was, of course, a pancreatic cancer diagnosis in his early 40s. So that sort of changed my complete life trajectory. It threw me completely off. And was actually where I met Lisa because she was the home hospice social worker that came to our house and helped guide me through and it really was from that experience of feeling like we were prepared. We had basic paperwork coming into it but we never had conversations around what we had written down and what he would have wanted in the final days. And it just was something that really took me by surprise after he had passed and after at least said I had these conversations about how common it is for people to feel unprepared. As Lisa was saying and not knowing what to ask or what to do. From that many conversations we had, we decided we wanted to do something about it and to help people like me know and prepare and have conversations early and continue to talk about these things so that when something like this happens, it's not so incredibly difficult and chaotic. JOHN A: Lori, thank you for sharing that. So I'd love to hear: Do you have a few lessons about your experiences as well as your service to others? And just the positive energy you've seen flowing from your collaboration together? What lessons have you learned that you could share with us around the importance of advanced care planning? LISA: Well, as I mentioned, I've worked within the emergency room setting as well as hospice. And what I'll say is that if someone comes into the emergency room with a massive cardiac arrest and the family, there's a couple of sons at the bedside. Typically, they don't come in with their advanced directive. And these two sons are being peppered with questions from all of us about what their dad would want in this situation. And it isn't that piece of paper that is even involved at that moment, quite often, we don't even have time to look in the chart to see if that person has an Advanced Directive. It is a second kind of conversation. And people remember with confidence the conversations that they've had with their family members. So you can take those two sons who have never talked with their dad about what he would want and in a catastrophic medical situation and they're just deer in headlights and they do not know and maybe they'll argue back and forth about what they think. But in that situation, we're going to do everything because no one knows the answer. And that is the default. Now conversely, we have another sons who come in and who've had those conversations and their dad has said, “I never want to be on a breathing machine. Don't do that to me. If I'm gone, I'm gone. Don't do anything to try to bring me back.” Those kinds of comments and those kinds of conversations, we have such an emotional attachment to those intense conversations that we remember them. And again, that's one of the goals of our Death Deck and even if you take away our wonderful tool and just have conversations about death and dying, it's those conversations that help give us the confidence when we're faced with needing to make a decision for our family member. JOHN A: I also realize that Stephanie West Allen, who introduced the two of you to us, taught me 15 years ago about a branch of research being done in the world of psychology called mortality salience which studies how our cognitive functioning can be affected by being confronted with death or tragedy. And I do find that these conversations are perhaps some of the most difficult if not the most difficult to have with family members and clients. What suggestions do you have to kind of help us increase our comfort level and to be able to spark these conversations that need to take place? LORI: Well, I think one of the things is to just acknowledge the fact that we know we need to have these conversations. It's coming. We're all going to have a situation where a loved one is going to die. We're all gonna die. So we know that we have to have these conversations. I think sometimes from what I've experienced is to sit down and do all the paperwork all at once is incredibly overwhelming. It's like trying to do your taxes in a day. Don't do that. It's very stressful. But we know that we have to do that. But fortunately (or unfortunately for taxes), there's a deadline. We know we have to get it done by a certain date. But with these conversations, we don't. We don't actually ever really have to do them at all. We all should be doing them. But there is no sort of date. We have national healthcare decision day which we just had in April, that is helping to set that tone of, “Here's a day that we should start talking about this. Here's a day we should start preparing for this.” But just knowing that it's not to just get in there, fill up paperwork, and go. It's gonna take a little time. And starting softly and starting slowly, getting just a couple of basics down. And I think one of the hardest things is sometimes just having that icebreaker. And that's one of the reasons why we created this game with so many cards and so many questions. It doesn't just go right into the, “Let's sit down and do a will.” There's other questions that more gently ease you into the conversation and get you to start to think about answering some of these questions. So that's my long-winded way of saying, “Knowing that it's a huge task, starting to divide it into smaller pieces, and doing it now before you're in the moment of having to quickly do it. So take your time, do your homework, and be prepared.” JOHN A: Beautiful advice. And I think I'd love to have you guys share a little bit more about the Death Deck because I think there's not only an intentionality around the questions and the conversations are going to lead to, but you've tried to inject a little bit of levity and humor into this right. Which I think, there's some lubrication, perhaps for the conversation there. Could you tell us a little bit more about the Death Deck? LISA: Well, I'll first start with just piggybacking a little bit on what Lori said. And practice makes perfect. Practicing talking about that increases our comfort. And so being able to have multiple ways that we can have conversations about death and dying can help increase that comfort level as well. So moving on to the Death Deck itself, so we have our Death Deck is our initial product. It is 112 cards and around 80 are multiple choice and the remainder open ended. And we designed them to be multiple choice for a couple of reasons. One: so we can insert humor into the cards. We wanted to add a little humor to make it a little bit lighter, a little more engaging, take away some of the full seriousness of the topic, and make it more accessible. We also used the multiple choice questions so we could treat it as a game. And as a game, you can partner up and guess each other's answers. And this allows it to be a more lively type of interaction. And what we found is that people are using the Death Deck to start conversations and advanced care planning. They're using them in community gatherings to normalize conversations on death and dying. And then we have a new deck that we just launched, called EL Deck or End of Life Deck, which is a little different from our death deck. Instead of having the little skull that I'm using the word death that our Death Deck has, we have a koala bear. EL deck is a little bit more sensitive and is to be used with people with serious illness and who are at an advanced age. Basically people that are closer to the end-of-life. This is our new deck that asks more specific questions about end-of-life preferences. But our Death Deck is the tool that we play in bars and restaurants and all sorts of settings to normalize these conversations about death and dying. JOHN A: Lisa and Lori, let me ask you, and I love the fact that you've now been led to create the ELL or end of life deck because I do think in a sense, there's two dimensions here. There's the dying and the impact of death, and the wishes that follow. I'm troubled right now with a situation I'm facing in my own practice where a single individual blind, brilliant, apparently, by all of his friends' descriptions, well-organized, had multiple conversations with lots of people. But none of it ever really got recorded and documented in a way. So now we have this huge disagreement. So I think having cards that lead the conversations, which then can lead to action helps there. But I also realize there is a big need on this end of life side of it as well. I'm curious, how do advisors help out as the prototypical PPI member? How can they help extend the positive impact of the work that you, Lisa and Lori, have done? And what suggestions do you have for them? LORI: Yeah, I think it would go back to what I had said earlier about doing your homework and being prepared. I think maybe providing information ahead of time, I'm not sure how often that's done. I know when Joe and I went in, we just basically were handed the paperwork in the office and started filling it out. We didn't want to talk about it before and we hadn't. So we were sort of put on the spot to make some decisions, which then got put in a binder on a shelf and never seen again. So I think having some documentation, having some Death Deck cards, having some other things that people can preview, and start to think about because these aren't big decisions. There are decisions you can always change as you grow and maybe have different opinions on things. But to be able to have some a little bit of prep, I think is hugely helpful. JOHN A: Yeah. Go ahead, Lisa. LISA: Yeah. I agree. And I think we're coming from a slightly different vantage point. But when we think about the grief experience for individuals, we think about how much their grief is impacted both by how the person dies and as well as how prepared they were in what kind of mess they left behind. I work with a lot of different hospice families and first of all, I can tell when I walk in the room, if they are open and have had conversations about death and dying because there is a peace and there is a comfort level that typically results in a more peaceful ending which then results in a more peaceful kind of grief process. And then we have the other experience where a death is avoided, even while the person is on hospice, they'll tell us to not even tell them that they're on hospice and the whole topic is avoided. And if there is some paperwork, it hasn't been discussed with people and oftentimes, those deaths result in the grief stricken person having years of work to do to unravel their estate, to unravel their accounts and all of these natures. So I think for their client or for your clients, the people that you're serving, they are going to have an easier time in their grief process and be able to kind of make you continue working with them as a client in a positive way, if they get this work done on the front end. And so, we have our Death Deck as a tool. There's also some great more TV and movies coming out. Our friend, Elizabeth Coplan, is a playwright and she wrote a play called Honoring Choices. And, then they turn that into a film. It's only about 15 minutes but it's a really great advanced care planning film that I think gets people thinking and talking as well. So, one idea I would have is to give your client some resources in addition to that binder or those paperwork that Lori was sent home with. This is what you can give them to help them be more prepared and which will, on the back end, help you when the person dies, and you're left helping them try to navigate the mess left behind. JOHN A: I think Lori and Lisa, I love the combination of your answers here. I think Lori, from your experience, there was a shock. You are just kind of forced immediately to confront something with no preparation. And it's a difficult subject. And from that mortality salience research, we know that when we're forced to think about death, our minds tend to freeze; they don't function as well and that there's a cognitive impairment of sorts that takes place. And the antidote to that is to lubricate the mind. And I love the suggestion of this film that's coming out. I will use it with clients who are trying to help them think more kind of long term. And it's sometimes very difficult to see through a glass darkly in the future. It seems so unsure. But I'm not speaking just of planning for death or end of life decisions, all aspects of estate planning. And I found that there's a video that's 13 minutes called, I think, Turning Points. And it's just a very touching story, but it gets the heart and the mind lubricated to then have more deeper conversations around legacy issues. I hope this film will do the same thing. And I'd encourage those listening with us to the podcast to think about how you can incorporate and integrate the Death Deck and now the End of Life Deck into this and as Lisa was suggesting, prepare your clients. Give them these resources. Don't just thrust this upon them as happened to Lisa. I'd love that we're getting close to the end of our time together. I'd love to have each of you kind of sum up and wrap up. Share final wisdom or thought odds with the hope that this conversation today is going to stick with people and not only help them do a better job, but assist their clients. And I love the thought that through these efforts, we can reduce the difficulties of grief for people as well, that's truly meaningful. LISA: Thank you again for having us. My final words are: we are all going to die. And all of our clients are going to die too. And so I propose that it's helpful for yourself to get comfortable talking about death and dying, if you're trying to talk about it with your clients as well. So I encourage people to practice having these conversations themselves and outside of a serious advanced care planning process. The more we talk about death and dying, the more comfortable we are asking questions about people's end of life preferences, or what they have in place. The more our clients feel that, the more effective I think we can be. So I'll just add that you can find us at DeathDeck.com and on all social media. We'd love to hear from people if anyone wants to reach out and talk with us about any additional ideas, we're happy to support. And we'd love to hear from people. LORI: Yeah. I will add, you brought the word legacy, John, and that just reminded me of such a wonderful thing that happened when I redid my paperwork and had someone help me guide me through that. And what they did, in addition to the paperwork and updating, was to do a legacy interview which I thought was so important, because I know Legacy videos and leaving letters behind all of that is sort of those additional kind of supplemental extra credit, if you will. Things that I think a lot of times we don't think about — I hadn't thought about prior — but I loved the fact that she included that as something as part of that. And I think that helped too, with just talking about that made it easier to talk about other things. It's all sort of part of it. And when you're thinking about saying goodbye, leaving letters for people, or letting them know how much you've appreciated them in your life, I think it's important. It all adds to being able to ease filling out all of the other paperwork. So I just wanted to add that. And with that, too, if there are things to orchestrate your own ending that you can include or want to include with that paperwork. That was one thing that really struck me. Joe lost the ability to speak at the end. So I had a lot of guessing of what he might have wanted. But it just seemed like that situation. All of those things that we don't really think about or ask about like what do you want to smell, do you want to be touched or hugged, what do you want to see or feel? All of those things are also very important in getting down on paper or letting your loved ones know as sort of the additional supplemental, but full picture of sort of orchestrating that editing for yourself. JOHN A: Thank you, Lori, and Lisa, for some beautiful summing up wisdom. This has been a wonderful conversation. Thank you both. LISA: John A, I just wanted to add that we do have a discount that we created specifically for this podcast. JOHN A: Wonderful. LISA: So listeners can head over to DeathDeck.com and enter PPI20 and that will also be, I believe, in the show notes. So people can see that there too. JOHN A: That's very, very generous of you both and we deeply appreciate it. And I'm inspired. I feel that we are going to make a difference. Let's all keep moving forward doing everything we can in this arena because it's one that not only do clients avoid. I think as planners, many planners avoid it as well. So thank you for all of the wisdom you've shared with us today. LISA: Thank you. LORI: Thank you.

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