What does a deck of cards have to do with end-of-life education? Tools like The Dementia Deck, The Death Deck, and the EOL (End-of-Life) Deck offer easy-to-use, casual, and even uplifting ways to start meaningful conversations. Asking simple questions can help us understand our needs and wishes more clearly: “What does a good day look like for me?” “What brings me comfort in stressful situations?” “If I ever need round-the-clock care, I’d like to be supported by…” If you’re concerned about dementia — for yourself or someone you love — these conversation starters can open the door. Beginning the dialogue may help you feel more prepared, more connected, and a little more confident as you move forward.

⁠thedeathdeck.com⁠

Transcript:

Diane Hullet: [00:00:00] Hi, I am Diane Hallett, and you’re listening to the Best Life Best Death podcast, and today I’m joined by two social workers who have a lot of interesting things to tell us, particularly around the topic of dementia. So welcome to Lisa Paul and Jessica and Peno. So happy to have you both here. Uh, let’s maybe start with, uh, Lisa, why don’t you introduce yourself?

Uh, Lisa’s the owner of the Death deck. And tell us a little bit about how you got into the field of social work and the death deck, and then we’ll move into what’s new. 

Jessica Empeño: Sure. Well, I’m excited to be here again with you, Diane, on Best Life. Best Death podcast. Yeah, so I am a licensed clinical social worker.

I have been working in end of life care for almost two decades, and I’m also the owner of the Death Deck, as you mentioned. [00:01:00] Um, I came into this space. Through a couple ways, but I would say that the most prominent way being, um, my experience with my dad, um, when he was diagnosed with leukemia at the age of 42 and I was 19, and how I handled that continues to be something that I, um.

Wish I had done better. And so through my career I have found myself really finding my space, um, and my comfort and the best use of my skills working with people who are approaching end of life. And then recently, um, I have taken a little break from that bedside care to be. More fully present and working on additional tools for the death deck.

Um, you know, the death deck, really our intent is to help people. Talk through end of life planning options and [00:02:00] begin having conversations early and often about end of life. And so I’m excited to be, um, partnering with Compassionate Choices for our new dementia deck that officially launches on September 21st available on pre-order now.

But yeah, that’s what we’re up to. And there’s some more tools in the works that I’m really excited about that I’ll be able to. Announce hopefully soon too, 

Diane Hullet: in the coming months. I love it. Yeah. 

Jessica Empeño: Yeah. 

Diane Hullet: Jessica, tell us about your path into social work and also tell listeners about Compassionate and Choices, because I talk about Compassionate and Choices and their website.

’cause I think it’s such a huge resource, but say more about that. 

Lisa Pahl: Happy to, thanks so much for Diane. I’m so happy to be here with you today. So my journey as a social worker began. Quite a few years ago, I’ve been a social worker for about 25 years, and my introduction to social work actually came through [00:03:00] hospice.

Um, a project in grad school introduced me to end of life care, and I was hooked. So my, uh, career as a social worker has really specialized in end of life care and hospice and working in the community. And I’ve had some opportunity to work in dementia space and really supporting people living with the disease as well as their families and caregivers.

Um, I am just in love with being able to provide useful, practical information to help people better understand what to. And how to adjust and also get the support that they need as they’re living with dementia or another type of serious illness. And it really has been my honor to support people through the journey and to, um, have the variety of experiences that I’ve had as a professional that just really contribute to it.

I love [00:04:00] creating new projects and developing new programs and listening to the needs that are out there, and then looking at really creative ways to address those. And so we’ve been able to do that, um, in partnership with the death deck. Currently I am the National Director of Clinical Engagement with Compassion and Choices.

Compassion and Choices is a nationwide organization that really focuses on education and advocacy around end of life care. We are committed to not only. Protecting and expanding options for end of life care, but really making sure people understand what their options are, that they feel empowered and that they have the tools and the information to plan for the end of life journey that they hope for.

So being able to talk about end of life wishes and include dementia in that conversation is not only something that’s so important, but it speaks so much to my heart with the experience that I’ve [00:05:00] had as a professional, but also the experience I’ve had in my own. Family and life. 

Diane Hullet: I, I think it’s so great that Compassionate Choices has really brought dementia into its sort of, uh, education component, so to speak, because I think end of life right now, if we just talk about death and dying and certain disease processes, it misses a huge chunk of the population, which is.

Dealing with dementia, and as you said, it’s not only people living with dementia, it’s also the caregivers and families. And I also, gosh, when you just said, you know, practical and usable, like, oh, those are my favorite buzzwords, because otherwise, what is it like theoretical and, you know, I don’t know, lives on some bookshelf somewhere.

I mean, people in the throes of caregiving need things that are practical and actionable and otherwise it, it just, it just falls on deaf ears. Right. It might be a nice. Like I said, nice report on a shelf, but how do I make this work for me when I’m juggling all the things I’m juggling as a caregiver? So how neat that the two of you, kind of, [00:06:00] not the two of you per se, but the two of you as the faces of your organizations have partnered to come up with this creative, um, piece.

So. Lisa told us a little bit about the death deck, but just to kind of reiterate it, if people aren’t familiar, well, first of all, you and I talked about it on Beth’s life Best Death number 96 back in the day, I can’t believe I’m now over 200 episodes, so it was a while ago. But the death deck is literally a deck of cards and it’s designed to be both playful and realistic.

And so it asks a series of. You know, essentially multiple choice questions. Like think back to middle school and your multiple choice question tests and kind of a, would you rather this, this, or this? And it’s a way to provocatively, instigate conversation, I guess I would call it, right? Mm-hmm. And then you also develop the end of life deck, the EOL deck, which goes a little more, I wanna say almost like sensitively.

It’s really [00:07:00] intended to be less of a. Playful game and lot more of a serious game for practitioners to use with clients. So now there’s the dementia deck. So just if folks can imagine a, a great little deck of cards that have questions on it, that help people wrap their head around things. So tell us some of the ways the dementia deck helps us get into this conversation.

Jessica Empeño: Yeah. Well thanks for summarizing, Diane. That was such a excellent summary of our products that we have. And you know, the dementia deck probably falls more in line with the, the UL deck, the end of life deck than the the death deck. There’s a little bit of. A tiny bit of gentle humor, but, um, it, it is mostly a very engaging and casual tone that I think helps make it super accessible for people and, um, give them entry points of conversation.

Um, but there isn’t a [00:08:00] lot of, of, um, specifically funny. Questions. And That’s right. Tongue in cheek. ’cause it’s, it’s important and, and honestly, a sensitive topic. And so we did treat it as such, just as an example, like 

Diane Hullet: the death deck has a question, you know, if you’re at a funeral, is it appropriate to flirt with someone, you know?

And it’s like a, absolutely, I found my partner there. B uh, maybe depending on how cute the person was. And c, absolutely not totally inappropriate. Right? So. So some humor that, that allows you to kind of play around with these things. But I, I appreciate what you’re saying that in this deck it is a sensitive subject.

Jessica Empeño: Yeah. Yeah. And so with the dementia deck, we’re really trying to help people, um, begin having these conversations and begin, um, thinking through some decisional moments that often occur within dementia that people can begin. That people can talk through with their family members about what they would want in that situation.

And so we, [00:09:00] we use the dementia values and priorities tool from Compassion and Choices as a springboard for some of these questions, um, to really help look at what the options are, what would people want, because what we see is that. You know, first of all, people often live with dementia for many years, and there are many points of, um, time where their family member has to make decisions for them.

Even, even in the, with a person who’s been living with dementia for many years and then they receive a cancer diagnosis. Um, you know, if, if the person is no longer able to really make decisions. Informed decisions about whether to pursue treatment or not. What, what would they want? And so family members are, they’re, they’re faced with many more decision points than I think we think about.

It’s, it’s before end of life. It’s living with dementia and, and what would a person want in those situations? And what I have [00:10:00] found from talking with people just like death and dying, people have a lot of opinions. They have family members who have experienced dementia and they have thoughts on what they would want differently or the same.

Right? And so we wanna just open up that dialogue and, and get people talking about the topic. 

Diane Hullet: Incredible. Jessica, can you tell us more about the values and priorities scale that, that Lisa referred to? 

Lisa Pahl: Yeah, the Dementia Values and Priorities tool, which is actually celebrating its 20th year in being in existence, is a very specialized and unique type of dementia directive.

It’s a tool that allows people to think about it. It sparks conversation. It inspires certain things to think about in the progression of the disease, and so it asks questions about what would you want if. So highlighting certain aspects of what they can expect as the disease progresses. [00:11:00] What would you want, you know, when you are no longer able to recognize your loved ones?

Mm-hmm. What would you want if you now require 24 hour assistance with your activities of daily living? So really, you know. Sparking conversation about very practical issues that are going to arise, but also at the same time weaving in a little bit of that education and that normalization because we know there are so many misunderstandings about Alzheimer’s disease and other forms and causes of dementia.

So the tool really includes that education. There’s an online interactive version, which includes little videos embedded throughout the tool to. Explain key concepts, things like comfort, care, and quality of life terms that we use and people hear all the time, but we don’t always take the time to explain them.

So our tool has little videos to explain those terms so that people feel like they really understand. [00:12:00] What decision it is they’re being asked to make. And then we also have ready to print fill in tools that you can also use that are currently available in four languages hoping for more soon. And so that really served as the platform that was just the perfect inspiration for taking that content and making it even more.

Accessible. Uh, like Lisa said, infusing just a little bit of humor, but we were very cautious. Dementia is no laughing matter. Mm-hmm. But there also are parts of it where, um, you know, it’s okay to keep a little bit of that humor. Sometimes you gotta laugh to keep from crying. Right. Um, we tell families that all the time, so we wanted to still bring that tone of the death deck.

As we build the dementia deck, um, but still take, stay true to the questions and the intention of the values and priorities tool. 

Diane Hullet: I’m intrigued. Jessica, when you, when you mentioned, you know, and you’ve been in this field a long time, when you say there are a lot of [00:13:00] misunderstandings about Alzheimer’s, about dementia, what, what?

Throw out some of the common misunderstandings. 

Lisa Pahl: Oh, goodness. I think one of the biggest is that this is normal aging. You know, I’ve, I’ve had so many people that say, what do you expect? She’s 84. You know, this is just how it is. Or, ugh, there goes grandma again. You know, those kinds of things that, that this is normal aging and it’s not.

Mm. Also, another big misconception is, well, you know what’s, what’s the point of getting a diagnosis? It doesn’t really matter. There’s nothing that we can do anyway, and that is absolutely not the case. There are always things that we can do, whether it’s focusing on their comfort. Their quality of life and managing some of the symptoms that they’re experiencing.

But also there are treatable causes of dementia, like symptoms. And so we wanna be able to rule those things out and make sure that the dementia like [00:14:00] symptoms that a person is experiencing isn’t because of malnutrition or dehydration or medication interactions. We’ve definitely, definitely seen that.

Mm-hmm. So those are a couple of my top, um. Myths and misunderstandings, but there are so, so many more. 

Jessica Empeño: Hmm. And I just wanna piggyback a little bit on the Dementia Values and priorities tool. Within the Dementia deck, we included a QR code and encourage people to, once they play the dementia deck, once they have some conversations to go ahead and complete that Dementia Values and Priorities tool one, because it’ll.

It will give people more information on these topics and be able to really help them make those informed decisions. And, um, also because it’s important to put those wishes in writing, right? And we can always change that just like we can with any advanced directive, you know, as our health changes after a diagnosis, you know, if our, if [00:15:00] our relationship with someone changes, these are all times that we can.

Make adjustments in our advanced directive and also with, you know, in terms of, uh, dementia values and priorities tool. And then the other thing I wanted to say is that with, relates to that tool, is that I used the tool with my parents. I had them complete it online and then I completed it as well. And then we had a conversation about it.

And it was, it was incredibly helpful because personally I will tell you that. My parents are, they, they are very fearful of living with dementia and they have talked about it often. My dad’s mom lived with dementia for nine years, and my mom was the primary caregiver, and so, um, it’s been a topic in our family for many, many years.

My dad’s concern, my mom’s concern, everyone’s concern of who’s gonna. You know, who might have dementia and being able to complete this tool together really gave them a [00:16:00] sense of. I have some say over this, you know, and, and I think that that is one way that we can reduce some of this fear and we can reduce conflict of course, as well, but just reduce that fear.

Like I, okay, my daughter now knows my healthcare decision maker, my daughter. She knows what we would want. Um, the other really interesting thing about that is that we all were so aligned that it gave us all such confidence that instinctively. I would probably know because we’re, we answered the questions almost exactly the same.

And so, so personally I’ve used the tool, um, and, and I, I think it can be incredibly helpful for, for increasing people’s confidence that they’ll be getting the care that they want. 

Lisa Pahl: I love about what you shared, Lisa, is it really emphasizes the importance. Of conversation. Mm-hmm. Of having [00:17:00] those talks and discussions with people about what you want.

We can fill out the forms, but that doesn’t matter if we’re not actually talking about it. Yeah. And that is just the most important thing. If nothing else that we can leave your listeners and viewers with today, Diane is just. These are important things to talk about and talk about them early. Talk about before you need them, right?

If you wait until that moment comes, if you wait until that dementia diagnosis is there, if you wait until you’re in a crisis, you may not be able to have that same type of conversation, right, where you can just sit down at the kitchen table like Lisa did with her parents. And so that is what we really want to encourage everyone to consider is.

The forms are great, the tools are important, but the conversations are what matter the most. 

Diane Hullet: Well, in the tools and the forums and things like the dementia deck give an impetus to have the conversation, right? Like they make the conversation a little easier. ’cause [00:18:00] there’s the thing to look at, there’s the thing to read, there’s the thing to share and, and yeah, I was thinking about.

What you said about doing it early, and I think it’s interesting because sometimes I talk with people in their twenties or thirties or that, you know, much younger age, and I think how do you just make these kind of reviews part of regular life transitions, right? So if you get married, you review your advanced directive and maybe a dementia directive or talk about it with your parents, if you have children, time to review everything again, if you get divorced.

Time to review everything again, when your kids, if you have children and they leave home time to review everything again, you know, maybe your 50th or 60th birthday time to review things. And I, I think that almost, uh, to me has made it simpler than thinking, I’m gonna somehow have this conversation out of the blue.

Like just tie it to a marker and have the conversation. Because otherwise, as you said, sometimes you wait until it’s a bit too late, and then what do you do? Somehow you [00:19:00] bring it up with someone who has. You know, they’re, they’re pretty deep in Lewy body dementia. Like you, you’ve missed the moment. I don’t think you’re then, uh, having so much of a conversation as you are hoping your instincts are right, as you said, Lisa.

Jessica Empeño: Well, and I think, you know, I hear time and time again from family members who have shared with me that they wish they had talked about this prior, you know, when they’re facing. Um, in, in hospice, of course, someone is. Typically if they’re on hospice for a diagnosis relating to dementia, it is end stage. It is late stage.

It is, you know, someone is typically bedbound and requires assistance for feeding and all of their activities of daily living, and so. Um, that’s far too late to have meaningful conversations about this topic and, and family members will share with me how stuck they feel, how, how much they wish they had, had the information [00:20:00] to perhaps, you know, make a different decision that.

May not have extended the life of their family member who they believe wouldn’t actually wanna live with that quality of life. And I think that’s an important piece that I know Jessica talks a lot about, um, within the, and dementia values priorities tool talks a lot about is, is that quality of life piece, you know, that’s what we’re really looking at.

What are your values? What are your priorities? What constitutes quality of life for you? And again, that is gonna change with our experiences, with our experiences, with other people, with experiences, with our own health. Um, as we age, we kind of, I mean, I’m even finding this at close to 50 that like, as I age, I’m more like.

Okay, this is just kind of what happens, right? And I, and, and that continues. We adjust to our new normal, we adjust to limitations and those things. Um, and so this doesn’t necessarily, this isn’t a one-time [00:21:00] conversation like you’re saying, Diane, this is, um, where we’re at now. And, um, and then continuing the conversation.

And, you know, what we’ve learned from the, from the death is that. It helps people have practice having these conversations as well, because if you’ve never talked about death and dying, if you’ve never talked about these decisional moments or what’s you or someone else would want for their care, it’s really hard to do that in a crisis.

It’s incredibly hard without the practice and the skills and the prior conversation to return to. 

Diane Hullet: Yeah, it’s that great phrase. It’s never too early until it’s too late, or no, that, how does it go? It always seems like it’s too early until it’s too late. Something like that. Right? 

Jessica Empeño: Yep. 

Diane Hullet: Well, Jessica, what would you add in terms of a tool like the Dementia deck playing out for clients and families like.

It, does it just sort of depend on the family? Do they want a deck of cards or do they [00:22:00] wanna go on a, an online form and fill it out? Or do they wanna print out a hard copy? Like how does someone know what tool to use? 

Lisa Pahl: Well, that’s the joy of it, is they have options. Uh, it doesn’t have to be just one thing.

It can be all of the things. So, yeah, I would think about, you know, do you want to have something that is more serious and focused? Right? Some people want to feel like they are accomplishing a task, that they’re filling out the form, that they’re checking the right boxes, and that is what brings them peace, right?

We say planning equals peace, so. For them, perhaps going through the dementia values and priorities tool. Um, and we might follow that up with a dementia deck, uh, conversation that includes other people. I think that’s one of the nice things is the dementia deck gives us an opportunity to have a conversation with a group.

It doesn’t have to just be a one-on-one. So, you know, you could have a, um, a, a gathering of family. The holidays are getting [00:23:00] ready to come up. Soon people are coming together. Maybe people that haven’t seen each other in a while. A lot of families use that as an opportunity to maybe have some conversations and just kind of do that check-in.

Um, while everybody can be there around the same table. So maybe there’s one card that everyone passes around and each person answers gives their own thoughts for that question. Or maybe everybody picks their own card and that’s what sparks the conversation. Mm-hmm. The nice thing is that. It’s flexible.

There’s no wrong answers here. Mm-hmm. The important thing is to just start, just try. Right. The the hardest, the hardest step is the first one 

Diane Hullet: I’m struck by. It really takes someone saying, let’s have this conversation. Right. Yeah. Either the grown child or the parent or the best friend. And you know, another thing that just popped in my head as you were talking, I was like.

Why wouldn’t this be an amazing thing to do with like a book group or like a men’s gen? Why not grab one of these and as a practice conversation, talk to some friends [00:24:00] and put it out there and say, Hey, you know, I think this is something we should all discuss and, and be curious about because this will happen to some of us, or to our parents, or to our loved ones, or to friends.

And so how do we be a little more prepared? I, I think, you know, it’s, it’s interesting. My guess is. A lot of people say kind of as a quip, you know, if you ask someone, if you don’t recognize your family members, what would you like to have happen? What I hear people say kind of loosely and what I’m guessing you hear people say, oh, well, if that’s the case, oh I don’t wanna be around anymore, but what does that actually mean?

What, how, you know, you can’t just check out at that point. So, so getting real about that as opposed to just like an off the cuff, oh, I wouldn’t wanna be alive. 

Lisa Pahl: Mm-hmm. 

Diane Hullet: Well, what does that mean? How, how would either of you answer that? Hmm. It’s a 

Lisa Pahl: question I’ve had so many times, and one of the ways that we can really [00:25:00] help people is understand that it, it’s not this all or nothing, it doesn’t have to be black and white.

Okay? So in working with people that are living with a disease, a lot of times what I would ask them and what I would encourage their family members to, to ask them is, you know, if you are not recognizing someone, if you are maybe stuck on a word, can’t think of the word that you’re looking for. Would you like me to remind you and and help give that little memory boost?

Or would you like me to pause and wait and give you that time to get to it on your own? And even just that simple question can be so empowering because for the person with dementia, you respect them. You are communicating that you see them and you are normalizing by asking that question, you’re saying this is gonna happen.

Mm-hmm. So help me with supporting you when it does, what do you want me to do? And, um, it is such [00:26:00] a great way to open the door to a conversation, um, around things like that. So, e even just starting there, if you don’t recognize me. You know, what would you like me to do? Mm-hmm. I’ve seen families where they just go ahead and proactively, everyone wears a name tag.

Mm. Right. And that way we are making it not about the person with dementia and calling them out, um, or, you know, everybody looking at each other awkwardly when they don’t remember. Um, but maybe we just build that in to the normalcy of the get together that. Maybe everybody wears a name tag or every time you see that person, just go ahead and introduce yourself.

You know? And if they remember, that’s fine. You can laugh it off. But if they don’t remember what a gift you’re giving them by just proactively offering that. 

Jessica Empeño: Mm-hmm. Yeah. Jessica, that was so beautiful. I think you, you have such great examples of ways to, um, [00:27:00] include people living with dementia in these decision.

Points in these moments, right? And such warmth of how you talk about that. And I think that, you know, I, I really wanted to stress the dementia deck, you know, it. Is about people’s quality of life, right? And so, um, people living with dementia often have really great quality of life for quite a long time.

And so, you know, we aren’t looking at this, um, this diagnosis or, or living with dementia as you know, this dark and scary thing. We’re trying to. Um, bring light to the topic, bring light to the conversation, and really think about how can we best support people living with dementia and those caring for them.

And you know, from my perspective, as someone who focuses on end of life planning, you know, this is the tool to help with that. But again, one of the biggest reasons [00:28:00] that I think it’s so helpful is not just the decision points. But it’s the, the sense of relief, um, that this has been talked about. The sense that my parents now have that, that they’re gonna be in good hands because I understand what’s most important to them and what they want.

And that’s really what we’re trying to do with these conversations is really, is really through that lens. 

Diane Hullet: Yeah. So interesting. This is so such a timely conversation. ’cause I’ve really wanted to bring some things this fall, in fall of 2025 to kind of some really practical, like what do families need to know?

What are the basics? Like getting back to some of that and I think dementia. I, I think it used to be cancer that people were afraid of, and now so many people live well after a cancer diagnosis. Not always, but many do. But dementia really is the big new word that people kind of have fear of and concern about and are living with.[00:29:00] 

So I think, you know, the dementia deck is this wonderful new tool that’s just one of several tools as you’ve. Said to help people have that conversation. So I’m just thrilled that both of you, um, came up with this and creatively engaged in this together and came up with a new way that families can dive into these harder conversations.

Lisa Pahl: Thank you. And that’s, you know, to your point, Diane, that’s one of the reasons that we chose World Alzheimer’s Day, September 21st as the day to release this and put it out into the world. Because that day, September 21st, every year is that reminder to raise awareness. About Alzheimer’s disease and other forms of dementia, but also to reduce the stigma.

There’s a lot of stigma. There’s a lot of fear, there’s a lot of misunderstandings around dementia, and that’s one of the big reasons we don’t talk about it. Sometimes people don’t know that that is what they’re dealing with because they’re afraid to go to the doctor or they can’t get into the doctor, right, to [00:30:00] talk about what they’re experiencing, and that can make it harder to have these open conversations.

So we really want to. Take this time to, you know, have those conversations about the future. You know, what do you want when, what are your healthcare wishes? What does a good day look like for you? And make sure that we’re including dementia in those conversations as well. 

Diane Hullet: Hmm. Fantastic. 

Jessica Empeño: Any last thoughts from you, Lisa?

Yeah. You know, at the end of the day, the dementia deck for me is another tool in your toolbox, um, in, in planning for end of life. And, you know, the best way that we can have the life and death that we want is by talking about it and planning ahead. 

Diane Hullet: Well said. How can people find both the death deck tools and compassionate choices?

Give us that rundown. 

Jessica Empeño: Sure the de, the Dementia deck and all of our tools ar*@**********ck.com 

Lisa Pahl: and the Dementia Values and Priorities tool is [00:31:00] av*******@******************es.org. And information about both of those tools are on each other’s websites. 

Jessica Empeño: That’s 

Diane Hullet: correct. Fantastic. Well, thanks so much for joining me.

Thank you for 

Lisa Pahl: having us. 

Diane Hullet: Yeah, 

Jessica Empeño: thank you 

Diane Hullet: Diane. It’s so good. So, uh, just food for thought is how I think of it. Listeners, food for thought. This is not a subject you should ignore. This is a subject you should look at head on and whatever. Way works for you with whatever tool helps you and your family do that.

So thanks so much for listening. You’ve been listening to the Best Life Best Death podcast, and you can find out more about the work I do at Best Life. Best death.com.