Jan. 18, 2022

14: Getting The Conversation Started

14: Getting The Conversation Started

Sure, it's important to talk about death and what we want. But how do you even begin this conversation? What if you're ready to talk but someone else is resistant? And what do we even need to talk about?
In this episode I interview Kate deBartolo from Th...


Sure, it's important to talk about death and what we want. But how do you even begin this conversation? What if you're ready to talk but someone else is resistant? And what do we even need to talk about?

In this episode I interview Kate deBartolo from The Conversation Project, and Lisa Pahl and Lori LoCicero from The Death Deck. They share tools and personal stories that can help you get the conversation started, regardless of how comfortable (or uncomfortable) you and your loved ones are with the topic.

 

https://theconversationproject.org/

https://thedeathdeck.com/

https://www.instagram.com/thedeathdeck/

 

 

Transcript

When you start working on your end of life plans, pretty quickly you’ll hit a point where you need to have a conversation with someone else. Maybe you want them to be your Health Care Advocate and need to discuss what kind of care you would want if you were incapacitated. Or maybe you want to share your vision for your memorial once you’re gone.

Then again, maybe you’re more worried about someone else’s death. Maybe you’ve been trying to get your aging parents to tell you what they want so you don’t get stuck making decisions in the dark.

All of these conversations can be hard to have. But there are people who are working to help us make them easier. On today’s episode I’ll be talking with some experts to get some tips and ideas for getting these conversations started. This is the second installment of the Death Binder series, a collection of deep-dive episodes about the decisions we all need to make while we still can.

[MUSIC STARTS]

Hello and welcome to Dying Kindness, the podcast for people who are going to die someday. I’m Cianna Stewart, and I’m going to die someday. You will, too. So let’s all make some key decisions now in order to be kinder to the people we’ll leave behind. If you don’t know what decisions you need to make or are overwhelmed by the process, I have a handy template to get you started. Just sign up at my website, DyingKindness.com, to get your copy of the Death Binder Template. You’ll find other resources there, too, as well as ways to support this show. Thanks for being here. Let’s get started!

[MUSIC ENDS]

Here are the facts: Many of us resist bringing up topics that people find uncomfortable. Most people don’t know how to talk about death and dying. In general, conversations are harder when they’re very personal or are about topics we don’t fully understand – and talking about death can be both emotional and complex. 

The other thing that’s true is that these conversations are really really important to have. I know you already know that. After all, you’re listening to this podcast.

What you might not know is that most people actually want to talk about death. They just need someone to start the conversation.

How do I know this? Because ever since I started Dying Kindness, I’m the person who’s bringing up the topic just by telling people I’m making a podcast. And I have been surprised at how many people immediately jump in and want to talk about it.

And, I also know that there are many people who don’t want to talk about their own deaths, including people who others think should talk about it because they’re getting older and more frail. 

So, how do you even bring this topic up?

I spoke with the Senior Director of the Conversation Project, and with the creators of The Death Deck. Great tools and suggestions for how to talk about end-of-life preferences, both your own preferences and those you might be responsible for. Stick around through the end of this episode because there’s so much gold here - and The Death Deck gave us some good laughs, as well.

My interviews with them were pretty extensive, too long to include in their entirety here. So today I’m sharing excerpts of the most relevant and actionable things they shared with me, but there is so much more. I’ll be sharing the full interviews with my supporters on Patreon. If you want to hear those or just want to support my work, head over to DyingKindness.com/support. Thank you to everyone who has already joined! You’re key to my being able to make all of this happen.

[CHIME]

First up: The Conversation Project. 

About a decade ago, Pulitzer-prize winning columnist Ellen Goodman experienced first-hand the difficulty of caring for someone with Alzheimers, particularly the pain of having to make decisions for someone else without having a clear sense of what they would have decided for themselves. After that experience, she was part of a group of colleagues and ministers and others who talked about end-of-life issues, particularly looking at “good deaths” and “hard deaths” and what made the difference between them. They concluded that one of the main differences was whether or not the dying people and their caregivers had had conversations about the end of life and what they wanted.

Ellen Goodman went on to found The Conversation Project to help others have these crucial discussions.

The Conversation Project describes themselves as a public engagement initiative with a goal that is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.” 

[Kate:] We're coming up on about 10 years of time now really trying to engage the general public as well as health systems. And all of our resources are free. We're trying to reach as many people as possible both those who need the resources in the moment who might find them really helpful, and to kind of change the culture from not talking about these issues to talking about them.

That’s Kate deBartolo, the Senior Director of the Conversation Project.

[Kate:] A lot of what we have on our website, the conversation project.org, is free conversation starter guides. So really trying to help people think through what their wishes might be, and how to bring it up. So we have some scale questions, some kind of icebreakers, things to talk about. And so I would say for anybody to take a look at that, first, whether you're trying to bring up your own wishes, or if you're trying to elicit them from someone else. 

Kate and I talked about how living in a society with advanced medical technology can actually make these conversations both more urgent and more confusing.

[Kate:] Science, technology, medicine has gotten so advanced that there are more decisions to be made. It didn't used to be that there were as many plans to make. Or if you had a heart attack or a stroke or got cancer, there weren't as many options for what the treatment might be. And so it feels like it's a more modern issue in some ways. And a more, like, “high access health care country” kind of issue, to have all of these options to try to weed through.

[Cianna:] You know, there are many people that are listening to this podcast have already created their advanced care directives. And that's something that we're very focused on. But you said something about it not just being a medical conversation, that it's a life conversation. And I'm wondering if you could say a little bit more about that. Like, what else needs to be discussed?

[Kate:] It's hard to talk about every hypothetical medical scenario that could play out. We shouldn't know what all of those scenarios are. Medicine and technology may improve your, you know, some people are like, “Well, I don't know, if I'm gonna have cancer, or if I'm gonna get in a car accident.” It's like, that's kind of the point. You don't always know what's going to happen. But what you can talk about is what some of your values are. What matters to you? How would you want somebody who has to make a decision on your behalf to think about that? And not just have it be yes/no answers, but kind of, Where do you stand on this, this range of questions? Are you concerned about too much care or too little care? That one question alone could help answer a lot of hypothetical scenarios that could play out. And I, if I can share an example there, when I was talking about how every conversation doesn't have to be super clinical or making medical choices. They should, the conversation should help somebody make a medical choice. So I have a colleague whose healthcare proxy is her husband, and she has some sentence such to the effective of, “As long as I can intellectually and socially parent our children I'm in. I don't care about the physical limitations. If I can participate in helping them with their homework, understanding what they're dealing with, with their friends at school, like I could really follow along with what's happening and contribute, then I want every extreme measure taken. But if I'm not able to participate in that way in their life, then I don't want extreme measures taken.” But that one sentence of “intellectually and socially parent our children” that helps him have a frame of reference for almost every medical option that could be presented. So that's kind of the conversation they've had because she's currently pretty healthy and if something were to happen, it would be a kind of unexpected, catastrophic event and so he could make decisions based on that.

[Cianna:] That's so valuable and it speaks to the, what does life mean to you? What does living mean to you? And not just what does medical care for your body mean to you?

[Kate:] And I know a lot of clinicians wish they could know that as well. But people will say like, “What does your… What should I do? What would you do if this was your mom?” I'm like, Well, I don't know what your mom likes to do. So if she's like a ballroom dancer, where the most important thing ever is, you know, physical abilities, that's very different than somebody who’d be super content, you know, in a variety of other circumstances. For my grandmother it was like, as long as she can have her cat with her, she was willing to live in any kind of setting. She would do all these things, like, as long as Pele could be there. So that was, like, the deciding factor for a lot of her care choices, based on “Where could she have her cat with her?”

I asked Kate for suggestions on how to raise this conversation with someone who’s resistant to talking about it.

[Kate:] So maybe my first thing would be to say, not to put so much pressure on this being one mega conversation where everything will be covered. But that this might have to be broken out into smaller conversations, or being– taking advantage of, “there's a story in the newspaper, and that made me think I don't know what you would want about X,” or you see a movie together or something happens to a friend or family member like, “Is that the same thing you would want?” So sometimes asking little mini questions that can be icebreakers, or something like this, like “I was listening to this podcast, it made me realize I'm, I'm not sure what you would want about X.” So sometimes using those types of excuses can work. The other thing that comes to mind is almost offering up, “Here's what I think you would want, is that right?” So they can go, “Yeah, yeah, yeah. That sounds good.” Or “No.” But you've kind of articulated something, you're not asking them to state the entire thing. But you're kind of basing it off of what you think they would want that can sometimes work a little bit better. I guess my last thought or tip on that is really trying to remove the emphasis on “How do you want to die?” or “How I want to die?” and to have it be on “How I want to live my life through the end?” or “How you want to live your life.” And the emphasis on living and doing that in a way that that respects the way you've made so many other choices in your life. You could go through the entire conversation and never bring up death and still get a lot of answers that would help you make decisions.

[Cianna:] Mm. That’s fantastic. There are many conversations that we have to have about how we're going to live until the end of life, that are not with people that we expect to be our healthcare proxies. Sometimes we have to have conversations with individuals in our family, because we want them to accept our choices around, and not fight with whoever we've designated as our healthcare proxies. Do you have any suggestions or tools for those conversations?

[Kate:] I think that that gets a little bit back to making sure that you pick a proxy who you do really trust. And it doesn't always have to be a spouse, it doesn't always have to be the adult child. It can be a college roommate. It can be a cousin. It can be somebody that you really do trust with your health care that you can have a good conversation with. And to let other people know that you've chosen the other person. So maybe you can't get into all of the details with siblings or with the parent who's not going to accept what the wishes are. But for them to understand, like, “I picked Susie. I need you to know that. I'm going to tell you it. I'm going to put it in email. I'm going to tell 10 other people so nobody can claim they didn't know this piece of information. She and I have talked. I want you to trust what she, if she has to make decisions.” Like it's, it's not getting into all of the choices and having to defend your choices, because that's the boundary that sometimes is not worth crossing, but just to make it clear who you have chosen or why. Sometimes that's more important than trying to explain all of the decisions to someone. There's a lot of people where their family of origin is not who they want to have involved in making choices, or there is a particular person they do not want in the room. That's worth getting in writing, emailing it to everybody who's around, making sure your doctor knows it, making sure it's in your record. Like if there's a real concern about someone or something, that's all the more reason to be proactive. But generally, that's not as necessary if people are kind of on the same page about who's in charge.

[Cianna:] I understand the focus of The Conversation Project is primarily on you know, basically non medical people talking to other non medical people, like family members and friends about their their healthcare decisions or their their end of life decisions. I'm wondering if you also have any tools for how to talk to doctors? Or how to understand what is being discussed or how to weigh different options. As you say, we have so many more options now than we ever had before. How does somebody make those kinds of decisions? And do you have any tools to help that along?

[Kate:] Yes, we do have a guide for how to talk to a healthcare team. So that might be how to talk about the care that's right for you, how to be proactive in bringing it up. What do you do if your clinicians like, “Oh, we've got time for that? Don't worry about it.” Or what do you if two clinicians don't agree about the kind of care. And it's also a helpful guide, if you're a caregiver or a proxy of kind of like, “How do I feel like I can and should make sure I understand what the options are here?” Different issues matter to different people. So I can't assume what you want to talk to a doctor about would be the same thing that I want to talk to a doctor about. And so just kind of giving people steps on how to even think through what questions matter most to you. Are you concerned about costs? Are you concerned about where somebody would receive treatment? Are you concerned about will they be at this wedding in two months? Like, what is it? So the guide kind of helps people with that. We also have a guide, we've got one for caregivers of people with Alzheimer's or other forms of dementia, as well as one for caregivers of children with serious illness. And the one for children in particular has a lot of kind of like, kinds of questions to ask how proactive you want to be in protecting the child from a lot of questions, or interruptions into the room. So we give some, I hope, helpful suggestions there.

[Cianna:] “It always seems too soon until it's too late.” That sentence all over your website and all your documents just, you know, pops out and it just makes so much sense. And certainly with dementia, it's like people often don't even want to get diagnosed until it's, you know, a little bit progressed already. And so certainly earlier than later, is the the number one thing. Are there any other sort of suggestions as well as landmines that you from your experience you could raise here to talk about like, whether it's talking to the person with dementia or talking to relatives about their dementia, and anything else in that category.

[Kate:] So we have a whole guide for caregivers of people with Alzheimer's or other forms of dementia. The line about “it always seems too soon until it's too late,” again, with with Ellen Goodman’s experience with her mom, dementia was a key part of that. Like she felt like by the time she wanted to ask all these medical questions, she couldn't have the conversation with her mother. This is one reason why we want to normalize having the conversation regularly. So it's before there's any kind of a diagnosis or kind of change in in status that way. So even if you're having to answer the conversation guide questions yourself, on their behalf, really being careful that you're, you're not answering with what you personally would want. But “What do I think Mom would want? Or Dad would want?” Or whoever this person is. And I think that's a common refrain to bring back, especially if there are other decision makers in the pot, or in the mix. You know, you get other siblings, it's like, “Well, you might not want that. But what do we think Mom would want here?

Kate also underscored the idea of needing to listen even more than to talk, to find out what people really care about. And to be open to them wanting things that maybe you don’t want, and to be willing to be surprised.

[Kate:] A lot of people have shared how much they focus on bringing up the conversation and not on listening, and how much they need to focus on listening. Or like, if you're going to ask a question, be ready to receive the answer, even if it's not what you might want, or what you wanted to hear. And so to be prepared for that.  A young woman was telling us about her grandparents who were living on their own, both facing kind of dementia, not willing to move to assisted living. She was feeling very stressed about it. And she kept telling them all the things they needed to do. She looked through our guides and resources while she was flying out to visit them recently, and finally started to ask them questions about what matters to them. I think that's a really key thing is, this is so much more about what matters to you and not what's the matter with you. It should be agnostic really of what's the matter with you, but what matters to you is what we want to focus on. And by the end of her visit, they had designated her the proxy, they were willing to move because she rather than framing it as what she wanted of them, it was let me hear what you want. And we could come up with a plan to respect that. So I think that that's a really key thing.

As we wrapped up, Kate really focused on the effectiveness of having multiple small conversations, not one big one.

[Kate:] I think that starting to have these conversations now and reviewing them, it's like you're working, you're building a muscle that you might not need yet. Or you're learning a language so that when the time comes, you're more fluent, or you're stronger, or it's not your first time trying to do it. Because we know that a crisis is a terrible time to learn and to try to get everybody on the same page.

The Conversation Project has so many resources available for free. Just head over to TheConversationProject.org.

[CHIME]

But sometimes you don’t want a big conversation. Sometimes you need a lighter touch to start talking about death. Maybe even some laughter.

In the spirit of learning the language of death through smaller, fun conversations, I think you’re going to love this next interview with the creators of The Death Deck. 

Lisa Pahl is a Hospice Social Worker and an ER Crisis interventionist. She and Lori LoCicero met when Lori’s husband was placed on home hospice and Lisa was assigned to his case. Lori’s husband, Joe, was in the final stages of pancreatic cancer and she found herself asking him questions about medical preferences and final wishes – questions she wished she had asked him long before. 

After Joe died, Lori kept thinking about this and suggested to Lisa that they develop something to help people in situations like hers. They decided to create The Death Deck, a card game to help others never have to go through what Lori went through. You heard me right: A card game. I’ll let them explain more.

[Lori:] I’ll get right to the point. It's really the game that I wished my late husband and I could have played before he died. So my backstory is, got married, started a family, got our paperwork together, or so we thought we had all our paperwork together and thought we were prepared. We did wills and advanced directives. But he unfortunately got diagnosed with pancreatic cancer. And when he did, we were, you know, in that denial mode, and that hope mode, and he was going to beat it. But unfortunately, it came to a point where we realized that he wasn't going to beat it. So had to bring in home hospice, which is where I met Lisa. She was the hospice social worker that that came in and helped guide me through. But I realized through the process that, you know, we we were like most people, we we had the one conversation but then we just never had we never talked about it ever again. So when it came to the point where he was actively dying, there were so many things that I felt cheated on. Not having asked. Not having had conversations. Feeling very, very unprepared at the end. And it was a horrible experience. So having conversations with Lisa I realized, you know, that's very common. That's that wasn't just me. And set out to do something that could help people. I come from a background of humor and comedy and felt like that might be a different way to to get people talking about these things that we generally don't want to talk about.

[Lisa:] You know, there are some conversation starters that are really great and helpful. But we were looking at, “What can we bring to the table? What can we do that's different?” And so what we decided on was, one, to add humor, and to just kind of try to make it a little bit easier to start the conversation. And then the other aspect that we added were multiple choice questions. And the idea with that is that you can partner up and then guess each other's answers.

I have the Death Deck, and using the multiple choice cards felt like a morbidly funny version of that 70s game show, The Newlywed Game. They read a question and each newlywed would have to guess what the other would answer. As you can imagine, hilarity often ensues. This also happens when you’re playing with The Death Deck.

[Lisa:] When we play it that way, where you're guessing, it kind of takes the heat off of the person, and it's more about the game of trying to decide, you know, figure out how the other person's going to answer and how are you going to answer. And then the conversations just start flowing because people, especially spouses, you know, may not know the answer to the question, and, and so it can get kind of lively. And, and what we found is that the conversations just keep going, you know. People think they don't want to talk about this, but they, but they do.

[Lori:] And what we're trying to do, too, is to get people to have these conversations before they have to have these conversations. That way, we designed it as a, as a game that can be played as a family or friends game night. So, you know, designed as both a game and a conversation tool, it's, you know, something that we're hoping that people will will play way in advance of having to have these difficult conversations. And by having them, you get more comfortable with them. So have them now.

Some of the cards in the deck draw directly from difficulties that Lori experienced in caring for her husband, Joe – experiences that were common to so many families that Lisa has worked with.

[Lisa:] I think one of the things that that was the hardest during that last week of his life was kind of deciding how much pain medicine and medication management he would want and how much he would want to stay alert. It was pretty stressful. The home was stressful, because there were differences in opinions, you know, with his family, and Lori in terms of the amount of medicine that he should have and would want. And, you know, that's one of the questions we have in The Death Deck is kind of, you know, “In those final days, should your family err on which side?”

[Lori:] One of the things that took me by surprise is that he completely lost the ability to communicate at the end. And that was something that I didn't realize, I never knew that that happened and it's very common. But you know, I was going off of my you know, Hollywood endings where, you know, you speak slower and more dramatically, but you still can speak and have these conversations. And when someone loses that ability completely, you know, I was kind of on my own. I wish we could have had more conversations about what those things could have been, or how he would have wanted that to play out.

[Lisa:] You know, the goal is just to increase our comfort in these conversations, so that when the hospitalization happens, when an event happens, there's, there's a history of having these conversations that you can pull back from. You know, we design the deck to be used this deck to be used for kind of everybody, so people can use it for advanced care planning, as a game night. But we really encourage people to kind of to look through the cards and decide what is best for your audience. You know, so if you're going to play with your, with your girlfriends, you might choose different cards than if you're going to play with your parents, or grandparents or something like that. So we encourage people to “stack the deck,” as we call it, and choose the questions that you think would would best fit the audience.

While most of us will only experience a handful of deaths at the most, Lisa has been through many in the course of her work. I couldn’t resist asking her what it’s like when people don’t have these kinds of conversations in advance.

[Lisa:] I think it makes the grief process harder. I, you know, when when we, whether it's the ER or hospice setting, when there's chaos and family members not agreeing, and people second guessing, because they don't really know what the right answer is. I mean, these are really hard questions sometimes. And, of course, family members have different responses and ideas about things and maybe even different conversations with their family members. What I see most helpful is when people have had these type of conversations. And when you talk about something, especially something as emotionally charged as this topic, it does tend to stay with you. The dream is that the family member after the person has had a stroke, and they end up in the ER, that the, you know, the two sons that are standing there say, Oh, Dad said this 10 times he does not want it to be, you know, he, he doesn't want to be resuscitated. If something happens, we need to get the POLST signed, you know, then they're on the same page, they have confidence that they know what their dad wanted. The flip side is that it's never talked about, there's no decision maker assigned, and the family is arguing it out, while the medical professionals try to decide what the best course of action is. The second guessing and the wondering if you did the right thing – it's really hard in grief. You know, the person's gone, and you can't do anything about it.

[Lori:] And also during that chaos, however long that is, you know, you're losing that precious time to be with that person to sit with, you know, your loved one and be able to be present and not have all of this, you know, drama and chaos. And “What if?” and “Should I?” and “I did the right thing? I did the right?” like, taking that out of the equation. I mean, and that's a gift that we give our loved ones, by us doing our own paperwork. That's, that's, that is such a gift. Like, you don't have to make that decision. This is what I want. And so, you know, you're able to be with them and just, you know, have that space and time while they're transitioning.

I want to underscore that point because I think it’s something we can easily forget. One of the great benefits of having these conversations in advance is that when they eventually become relevant, when someone is dying, you don’t have to spend all your time stressing and arguing over what to do. You can instead focus your attention on the time you have left with the people you love.

Of course, it can feel like a lot to even suggest playing this kind of game. 

[Lisa:] Sometimes people when when you say like, “A game night. We're gonna play this game.” It, it just creates anxiety, and they think. “I don't know what it's gonna be like.” And so just starting slow with one card, or maybe you're cooking together with your mom, and you you're talking and you're cooking, and you say, “Okay, let I have this. I have this card, Mom. I wanna ask you this question.” And and test the waters. they might initially say, “Oh, what do you what do you give me right now?” You know, kind of this grumpy thing. But then. But but everybody has an opinion. Everybody has something to say.

[Lori:] The way that it's structured is that there's 112 cards, 80 of them are multiple choice, and the other 32 are open ended. But the reason we went with that multiple choice is, you know, we know that putting people on the spot and asking them point blank some of these questions is really difficult. You know, “Do you have an Advanced Directive?” (mumble) “I don't want to talk about that.” But if you bring a multiple choice and play together and either try to guess each other's answers, or just share answers with each other, then you're taking people off that hot seat and just sort of, you know, laughing a little with the humor of the of some of the the answers, but to just bring a card or two. I think people would be surprised as to how long the conversation stretches out just from one question. So that sort of opens the door. So, you know, stacking the deck if you’re going to play is great. You’ve got 10-15 cards. But just approaching someone, and just showing them one of the cards.

[Cianna:] In terms of the specific questions that are on these cards, I think it's easy to imagine that, you know, it'll have things about your advanced directives, and that sort of thing feels very straightforward. But when I actually looked at the deck, I was really enchanted (I would have to say is the right word) to find certain questions in there that were really surprising, things that could be great conversation starters that I would not necessarily have come up with. For example, here's one of my favorite cards, “Your spouse dies. Would you read their emails and journals?” That what is like, that's a lively starter!

[Lisa:] Oh, it is!

[Lori:] “In front of your spouse.”

[Cianna:] “Oh, even better, yeah. In front of your spouse.”

[Lisa:] “Oh, yeah. My husband and I talked about that question for a two hour, I don't even remember. One night we went back and forth on it because there was just a lot, a lot to say.”

[Cianna:] “I love that. I love that. I also love this. So you know, of course, I loved the show Six Feet Under. And the opening of every episode was somebody dying in all kinds of different ways from completely, you know, expected to completely ridiculous ways. And the fact that you had one of your cards says, “Which of these would you be most mortified to have as the cause of your demise? An erroneous swim in Piranha infested waters, B: An electrical mishap hanging holiday lights, or, C: Death by nachos?”

[Lisa:] Well, wasn't the death by nachos didn't happen to someone you knew?

[Lori:] Not that I knew. But I did read about it.

[Lisa:] Okay. 

[Lori:] This is the service message to not eat nachos from a gas station. Which should have been, you know, obvious anyway. But I think someone had died from the cheese. But, yeah.

[Cianna:] I also enjoyed that some of the cards pointed to basically like, how do you live your life now? Most specifically, the multiple choice of, “How often do you let the ones you love know how you feel?” And to me, that's one where you get into a conversation. And then you're like, “Wow, maybe I should do that a lot more often.” Or, “Oh, I feel good. I do it. I do this a lot. Everybody knows exactly how I feel.” It seems like that would be a really rich conversation for living, not just for dying.

[Lisa:] That is part of the point of this game is not just to be prepared, not just to enrich conversations with family and friends, and deepening those connections. Those are all great things, but it's also about, you know, understanding our mortality, and the fact that we aren't going to live forever. And we really need to be living the life that we want to be living. And so we love when people, you know, have kind of these, like you said, these rich conversations and even journaling or their own thoughts about it. And how you want to live your life with our, with our numbered  days.

We ended up going through several more cards and sharing our answers. I can confirm that the conversation was lively and interesting. Considering how close I felt by the end to these two women I’d never met before, I can only imagine how excellent it will be for me to play this game with people I already know and love.

[Cianna:] In your ideal universe, if this if this card game and the conversations about death that, you know, come out of it, were to achieve your ultimate dream? What would that dream look like? What would, what is your ideal for all of us having these conversations?

[Lisa:] To me, I hope that people start to recognize that they are going to die, and that our time on Earth is precious. As well as that, it's, it doesn't have to be scary to talk about death. It can, it can be fascinating. It can be interesting. It can be enriching. And, and the conversations, I mean, the three– we haven't talked before today, but you can feel closer to someone from having these types of conversations. I mean, it's, it's, it's almost immediate. And so I just, I hope that people can also, you know, deepen their connections with their relationships with their family members through these conversations as well.

[Lori:] Yeah, and I hope that we can reach people to take some of the fear out of death and dying by being prepared and be able to have peaceful deaths. I mean, I know that's not always the case. But I think there's a lot of cases where, if you've had these conversations, if you are able to embrace your mortality, if you are able to share all these things we've talked about with our loved ones, and it comes to that point where you're actively dying, to have that peaceful time and that peaceful death. Because I don't think it needs to be so chaotic and so fearful. And, like my experience, watching my husband die, that there was so many things I wish I could go back and change. But from that I'm hoping that by playing The Death Deck, by having conversations, by being better prepared, people can, when they do get to the end, have a more peaceful transition, whatever that might mean to them, but to have that that peaceful death.

[Lisa:] Well, and you know, like many things, it gets easier, the more you do it. Right? I mean, talking about death and being open to talking about death and grief. And and these topics. It's, you know, if you've never done it, or you're you were raised in a family where it wasn't discussed, and maybe even hushed, it, you know, you just, it might be hard at the beginning, which is why we put some softball questions in there. And, but, but the more that people, the more you talk about it, the more you practice that, the easier it becomes. And, and again, hopefully that takes away some of the fear and allows for that, that peaceful death.

[Cianna:] I think that’s great. Thank you. Thank you so much for this conversation. I really appreciate it. And I am going to be pulling these cards out. So anybody who knows me in person, watch out. I'm going to start playing cards and asking you questions.

[Lisa:] We love it! We love it.

The Conversation Project and The Deck Deck take really different approaches, but ultimately they exist for the same purpose: To help others have the conversations that need to happen to support having a peaceful death.

I hope one of them (or both) proves useful to you. The Conversation Project has all their guides available for free from their website, TheConversationProject.org. And The Death Deck posts questions from the cards on their Instagram feed, @TheDeathDeck. If you want to start asking your friends these questions today, go there and check it out. And then order the full deck from their website, TheDeathDeck.com. I’ll put links in the show notes.

As I mentioned at the top, I could only share part of my conversations here. If you want to hear the full interviews, join my Patreon at DyingKindness.com/support.

[MUSIC]

I hope you found this episode useful. If you know someone who could benefit from it, please share it with them. 

The theme music is by Blue Dot Sessions. Everything else was done by me. I’m Cianna Stewart, and I’m going to die someday, but hopefully not before I get to spend some more time laughing while talking about death.

[MUSIC ENDS]

Today’s death reading is “Death” by Sean Hughes

[BELL]

I want to be cremated 

I know how boring funerals can be

I want people to gather

meet new people

have a laugh, a dance, meet a loved one.

I want people to have free drink all night.

I want people to patch together, half truths.

I want people to contradict each other

I want them to say “I didn’t know him but cheers”

I want my parents there,

adding more pain to their life.

I want the Guardian to mis-sprint three lines about me

or to be mentioned on the news

Just before the “parrot who loves Brookside” story.

I want to have my ashes scattered in a bar,

on the floor, mingle with sawdust,

a bar where beautiful trendy people

Will trample over me … again

[BELL]

Lisa Pahl & Lori LoCicero Profile Photo

Lisa Pahl & Lori LoCicero

Creators, The Death Deck

LORI LoCICERO
Lori LoCicero is a freelance writer and the 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: a lively and humorous card game that inspires meaningful conversations on what matters most in our lives and in our deaths.

LISA PAHL, LCSW
Lisa Pahl is a Hospice Social Worker, ER Crisis Interventionist, and co-creator of The Death Deck. Lisa’s goal is to help people cope with illness, dying, and grief. With a passionate belief that peace at the end begins with meaningful conversations over time, she engages people in talking about and preparing for this difficult stage of life. Embracing a challenging but equally rewarding career as a Licensed Clinical Social Worker in both the trenches of ER and within her true passion working in hospice, Lisa has witnessed hundreds of deaths which have taught her innumerable lessons about truly appreciating life.

Kate DeBartolo Profile Photo

Kate DeBartolo

Senior Director, The Conversation Project

I started working with The Conversation Project team in April 2013 just before a big move and getting married. My role at the time was to build a field structure to support the many communities bringing the conversation to their regions. What I didn’t realize when I started was how much I’d be bringing these conversations to my communities. Whether it was the conversation I had with my husband after we got married and had a child; the chat with my aunt and uncle – and then their elderly neighbor who was excited to learn about it through them; the training session I’ll be doing for my financial planner and her colleagues who want to share this with their clients; or the many conversations with friends… this topic has taken over my work and personal life in the best way possible.

Anyone can bring this initiative to their own families or networks - and we are happy to help. Please reach out if there is any way we can support you.

I love seeing so many types of community leaders get involved with this initiative; TCP strives to meet people where they work, live, learn, and pray. We partner with hundreds of individuals and organizations across the country (and world) who are remarkably creative with their approaches to spreading these conversations in their local settings. Our small team depends heavily on local leaders to help us translate this work to appeal to their community members. They are the best at knowing who to engage, and how.

Anyone can bring this initiative to their own families or networks – and we are happy to help. Please reach out if there is any way we can support you.

-----------

Kate DeBartolo, Senior Director, has worked at The Institute for Healthcare Improvement (IHI) since 2007. She currently leads The Conversation Project team and operations. Additionally, Kate manages and cultivates relationships with national and state-level organizations that help engage the general public in advance care planning.