Don't Be Caught Dead Without This

Death by Design Podcast: ūüéßFascinating End of Life Perspectives and Entertaining Stories

Kimberly:

I’m Kimberly C. Paul. As I travel throughout each state, I realize that death is just a moment. It is how we live until that moment that matters– finding a connection with friends, family and complete strangers. Journey with me.¬†

This is the Live Well Die Well tour. First of all, thank you so much, Steve, for joining us today on Death by Design podcast. It’s really a pleasure to have you a part of my Live Well Die Well tour as a sponsor, but also talk to you about a very exciting platform that you’ve created called Final Roadmap. So tell me a little bit about you and your wife and how you… this kind of evolved.

Steve:

Well, thank you for having me. It’s my pleasure. And I’m thrilled to be doing this. I’m also thrilled to be part of your podcast and Death by Design.

Kimberly:

Thank you so much. So really, you know, how did the Final Roadmap evolve? Was there a personal story behind this?

Steve:

It was more a continuing, evolving story. How it came about– Kerry, even as a child, was always interested in end of life. Like seeing all the problems… We grew up in a Southside Irish Catholic neighborhood in Chicago. And, you know, there would be deaths in the parish. You know, grandmother would die, grandfathers would die. You know, especially elderly people. Elderly people. And¬† people would be shocked, like, “oh, my gosh, they died!” And she would think to herself, “yeah, they’ve been sick for a while, and they’re older. People die.”¬†

Again, they would be like, OK, now let’s get the wake together. Let’s get the funeral together. Let’s all bring over to casseroles to the house. And she’d like, oh, my gosh, we’re getting casseroles for twenty days that will be gone, and not good in two days, right? You know, just thinking to herself like this is kind of crazy. She was always a curious, smart kid. And then she would be like driving around with her mom. And her mom would say, “oh, don’t let me go to that funeral home. I hate the color of the lipstick,” or “don’t let me go to that funeral home because there’s not enough parking,” and Kerry would think to herself like, “well, how am I supposed to remember that? I’m 11, mom. Why don’t you write that down?” But she always tells stories about how she was thinking about it. And when I met her, she was already a professional in the healthcare industry and she was always talking about how poor end of life care is in our country.¬†

I mean, for twenty years I heard her talk about that. She had a friend who was a state attorney and they would be talking like, there’s gotta be a better way. So when I closed my business after 30 years in a different industry, I said, “honey, if you really want to do this, if you want to, you know, bring your dream to fruition, this is the time to do it.” So we decided to create Final Roadmap. She went to Loyola Medical School and got another degree in bioethics.¬†

Kimberly:

I love bioethics. 

Steve:

So does she. 

Kimberly:

Yeah, I love it.

Steve:

…to write the content of our toolkit. And I learned about, you know, web development, web hosting, security. Picking the right partner to build our toolkit and making sure that everything’s secure. So we went on a two-person path. It took several years to get it built and that’s how it happened.

Kimberly:

So tell me, what kind of resources is Final Roadmap providing to the community at large on the Internet?

Steve:

Well, we are a comprehensive online guide and toolkit for all end of life issues. We try and teach people the things to think about that can cause problems. We give them examples, and we give them food for thought. So the whole idea is to consider what you want for yourselves and help you say those things, help you put it into words. And then we give you a place to document that. So that you can not only say exactly what you want, but now you can write it down so that people can see it and you can share it. You can communicate it. One of the really unique and powerful features of our toolkit is to be able to share your wishes and instructions securely anywhere in the world that has the Internet. So if you have families spread out across the United States or even internationally, you can let them know what you want. So when something happens, the time comes, or you can’t speak for yourself, whether it’s illness and accident, Alzheimer’s or death– that way, when they come in, the family is on the same page. It’s not one person flying in from New York saying, “oh, my God, we’re not doing that. Oh, no, no, we can’t do that.”

Kimberly:

Yeah, exactly. And I tell you, I’m sure you’re fully aware, that that happens every day in the medical community. And there’s a lot of confusion around just what to be done, even though there are formal documents in place.¬†

What’s brilliant about what you’ve created is that you hit it right on the head. It is that sometimes we don’t know what we don’t know when it comes to preparing for or planning or how we talk about the end of life.¬†

Tell me a little bit more about some of the prompts that you provide people when it comes to even beginning to think about planning for the end of life.

Steve:

One of the things is, everybody says they want to be a vegetable. I haven’t met one person who says “I don’t want to be a vegetable.”¬†

Kimberly:

Or I do, too. Like, 100 percent do not want to be a vegetable, in some nursing home, dying, slowly.

Steve:

What does that mean to you? At what point is that an unacceptable quality of life? What are the three to five things that make life worth living for you? What is an unacceptable quality of life? And we take people through those steps to help teach them to say what’s important to them.

Kimberly:

Now, do you have– I mean, it sounds a lot like almost pre-planning. Before you go to the actual legal documents, are these legal documents incorporated with the Final Roadmap or is this like the stepping stone to use when preparing those legal documents?

Steve:

First of all, let’s go back to the first part of your question. It is pre-planning. It’s planning ahead of time. We encourage people to think about what they want for themselves while they’re healthy. Once something’s happened or you’ve been diagnosed, the stress and the outside influences are exponentially compounded. You know, you’re like, oh, my gosh, what’s going on? But if you’ve taken the time to think about it ahead of time, it’s so much easier to tell your loved ones what you want because you’ve been thinking about it and hopefully communicating it.

Kimberly:

I totally agree.

Steve:

And as far as the legal documents go, we have a legal financial section where all of your legal documents can be uploaded right there so you can share them with your family. We also explain what each legal document is and why you might want it or why you might need it.

Kimberly:

Oh, wow. So you really are making advance directives mobile in every sense of the word.

Steve:

Absolutely. And it’s so much more than just advanced directives. It’s also what you want for your, you know, services. What do you want for visitation? What about messages for loved ones after you’ve passed away? What about notifications? How do you stop paper delivery? How do you stop the milk delivery. You know, things that you can do that will make it easier for your loved ones after you’ve passed away.

Kimberly:

Wow. That’s… This is exciting. And, you know, tell me, what are your hopes for the future of this platform? I mean, what do you see and how do you hope people utilize this platform?

Steve:

Well, first of all, our goal is to have everybody consider the document and communicate their wishes. Whether or not they use Final Roadmap, we just want it done. We’re just passionate about preventing all the problems that you can around end of life. We just think we have the best platform for it.¬†

Kimberly:

Of course. And I, you know what? I’ve been around different platforms a lot. And I have to tend to agree with you. I think you are providing a really innovative way to incorporate and share these legal documents, as well as just probe the question and allow people to understand that there are certain things beyond our comprehension. Until we face those, we’re not going to know we need them. And so your platform really does tickle these subjects to like, oh, what would I want? And so I really do. I think you’re one of the best out there for sure.¬†

Steve:

Oh, thank you. We appreciate it. We’re pretty proud of what we’ve done. It’s been a long road, but we are very happy with the result.

Kimberly:

So tell me how Final Roadmap’s website actually works. What are the first steps? Is there a cost? You know what? How does someone like me take advantage of your platform?

Steve:

Well, you just go to finalroadmap.com. And there’s a public site where we teach you a little bit about what we do and then hopefully, you’ll be interested. And you can purchase a tool kit. It’s two hundred and forty-nine dollars if you buy just one. The price goes down if you buy more. And that two hundred forty-nine dollars is a onetime lifetime fee, and you can change it as often or as life dictates.¬†

It’s not a subscription. You’re not going to be getting any emails from us. We leave you completely alone, but we give you information to contact us if you have any questions. We feel strongly that this is something that you should be doing for your family without anybody else telling you what you should do. We just give you guidance. That’s amazing. Our goal is for everybody to have the death that they want. If you want everything, every medical procedure. Go for it. Get it. Make sure you let them know that. But if you don’t want to die in an ICU unit hooked up to all the machines, please let people know that’s important to you.

Kimberly:

Absolutely. Now you talk to… Are you able to share your site within your site with family members, too? I mean, how does that work?

Steve:

Well, that’s what I talked about. I know one of the unique and powerful tools is that you can share this with your loved ones anywhere in the world and all it takes is to have you put in their email address, and a letter gets sent out automatically to them asking them to be your designee, and it says roughly: so and so would be honored if they could share their end of life wishes with you and they can set up a Final Roadmap toolkit designee online for no cost, and that allows them to see your wishes but never change them.¬†

It’s a read-only document. And each time you fill out what your wishes are, you are allowed for your designees to say: they can see it now, they can see it after I pass away, or they can never see it. The other part of the security of that, too, is that every time that one of your designees looks at your documents, you get an email knowing that they have looked at it.¬†

Kimberly:

Wow. That’s really exciting.

Steve:

I told you it was powerful.

Kimberly:

Now, you’ve been up and running for how long now?

Steve:

It’ll be four years in June.¬†

Kimberly:

So you’re getting ready to launch some new aspects to this website, too?¬†

Steve:

Well, what we’re doing is we’re just updating the public site. But as far as the toolkit, the member site, we’re always adding to it. We’re always making it more robust when we learn new things. For example, Facebook just came out with a way to stop social media after you pass away. We put that information in there. In Washington State, there’s a new, a law that was just passed about a new way of disposing of your remains instead of burial or burning. It’s composting. It’s recomposing your body. It actually turns your remains into soil.¬†

Kimberly:

Which Katrina Spade led the fight for that. And I am so proud to know her. And her passion behind what she’s done is just amazing for the state of Washington. And I hope every state follows with having as many choices as possible. But this one is such a no-brainer. But I love it. I mean, I’m thrilled for her. And, you know, I tell people about Katrina Spade, and one person can make a difference. She has championed this for many years and gotten supporters around her. And she did, along with those who support, this will make a huge difference for how people will face the end of life and, you know, getting rid of a body. And it’s just another option. And I’m just really proud to–

Steve:

Exactly, It’s another option. And what it does is it gives you a choice. If you don’t agree with it, you don’t have to do it. If you want it, you should be able to get it.¬†

Kimberly:

Absolutely. 

Steve:

And again, that’s what Final Roadmap tries to do. Give people options so that they can get what they want for themselves. And I think it’s a great idea and I plan on using it myself.

Kimberly:

Yeah, I’m totally, you know, I never thought that I was… I thought I was against being buried. And then after I learned because of this whole movement, in your state, Washington state, I really learned like, well, I’m not sure I want to go that route anymore because of what it’s doing to the environment. And gosh, I just am so proud. And let me ask you this. Can people visit your website and see some of these resources or do we have to purchase a toolkit?

Steve:

Oh, no. There is a lot of information on the site that shows what we do. We help give people ideas. You don’t have to purchase it. We try and, you know, help you understand what we’re doing before purchase.

Kimberly:

So this is a great resource for all the listeners out there, even if you want to learn more about, you know, up-and-coming things that are happening in other states and possibly how you could bring it to your state. And what we’ve been talking about is Katrina Spade and in this whole recomposing, composting of human bodies. But really it’s going back to the old days where you just buried a body in the ground. But I’m sure there are a lot more details than how I’m simplifying it.

Steve:

It takes your body and turns it into soil in 30 days. 

Kimberly:

It’s amazing. It’s amazing what your body does when it’s not tampered by any artificial things.

Well, you know, Steve, you’re also a part of this grand adventure that I’m on called Live Well Die Well Tour.

I really thought your platform fit in really nicely because of your title. I’m on driving to 49 states. Final Roadmap provides, you know, kind of the journey I’m on even personally, whether I’m in an RV or just, you know, living my life. And that one day we’ll die.

And so I really want to say thank you for being a part of this tour. But why was this tour sort of, you know, an interest of yours to jump on board and come with me?

Steve:

Well, first of all, thank you. You’re welcome. And it’s because we are passionate about kickstarting the conversation, and your van looks like it’s doing a great job of that.¬†

Kimberly:

Yes, it is. And I’m, especially on I-95 in the East Coast. I’m sure people are passing me by and thinking “what the–” So, but, it begins the conversation about it. It takes it out of the closet.

Steve:

Anything that can educate the benefits of preparation to help allay the fears of and taboos surrounding and discussing death. That’s great. It’s great. It’s like, you know, my wife says that baby boomers are going to change dying like the way they did birth. You know, now we’re helping it become more accessible to talk about, easier to talk about, to make people more comfortable talking about it. It’s a part of life. You know, it drives me crazy when someone says, “well, if I die…”¬†

Kimberly:

Absolutely.

Steve:

Like, excuse me? Yes. It’s part of life. Talk about it. Make it easier. And what that does, it gives you peace of mind that you don’t have to have those conversations; you’ve already done it.

Kimberly:

You know, the more I talk about death, the more I feel like I’m truly living in the present moment, and… Because when you know something’s going to end, you know, it really wakes you up to what matters most in this world. And it’s connection, it’s building, helping people not struggle the way we struggled through this, in our own losses.¬†

And your toolkit and your platform, your website Final Roadmap is allowing people to learn long before they need the resources. But that’s what it’s gonna take to normalize these conversations.

Steve:

I agree. That’s why we’re supporting you.¬†

Kimberly:

Thank you. And I so am grateful because, you know, I feel being one person, I’m very limited. But collectively, all of you sponsors who are behind this tour together, we’re unlimited in what we can do. And it just takes connection and communication and a passion behind, you know, helping others come to terms with this, what seems to be a very hard and taboo subject. But we’re changing that. We just need to open the door and provide a little bit of permission.

So, any last words about your platform and what you guys are doing, you know, how can I better support you? I will say to the listeners, you know, I’m on this year and a half book tour. If you get a signed book from me, you will see the Final Roadmap sticker in there. I really highly encourage you to go and look at the resources and, you know, you know, $250 sounds like a lot of money, but going to being unprepared? I cannot tell you what that would cost you emotionally as well as financially when you’re not prepared. And you know what? Death does not discriminate. You know, Rob died at 30 years old, and you just never know when that is around the corner. So we plan for the worst and we live our life like it’s the last day.¬†

And so, any last words from you, Steve?

Steve:

We just want to emphasize that the Final Roadmap is committed to preparation as a source of peace of mind for individuals and the ones that they love. We invite people to be organized. We try and teach them how to do that. Our focus is on those decisions that can be anticipated and cause the most unnecessary pain and waste, when we struggle to accept death as part of life. Because death is part of life.

Kimberly:

And you’re exactly right. And I can’t express my gratitude for you and your wife Kerry, to, you know, be part of this positive movement when it comes to really normalizing the end of life conversation. Your platform is just brilliant. And, you know, I’m hoping me and my family will take advantage of it. And I just say thank you not only for providing this platform but for coming on this tour with me and supporting me. And, you know, I guess combining our missions together, trying to reach as many people as possible and collectively we can do that.

So thank you so much!

Steve:

Thank you, Kimberly.

Kimberly:

Thanks, all, for joining us and taking time out of your day. Again, everybody, that’s finalroadmap.com. Check it out. Resources are there for free.¬†

You know, I’m sure, Steve, is there a way to glimpse the toolkit prior to purchasing?

Steve:

Yeah, finalroadmap.com. There are six sections that we have in there. You can click on the icons and get a preview.

Kimberly:

Awesome. Please check it out. I cannot stress this enough: prepare way too early, because it is always too late when you’re not prepared for things that prop up. As we all face those that we love losing them. So this is a great resource. So I highly recommend it. Steve, thank you so much for joining the podcast, for creating a platform. And I look forward to continuing our work together on the Live Well Die Well tour.¬†

Steve:

Thank you. 

Kimberly:

Thanks for joining us today. And remember, you’re the designer.

Steve Byrne

Steve Byrne

Steve Byrne is the co-founder of Final Roadmap, a secure, comprehensive online guide and toolkit for end of life preparation. Steve is passionate about preaching the importance of planning. He is an entrepreneur and businessman. He has started numerous small businesses and has a track record of outstanding customer service and customer sensitivity. His volunteer resume includes working with hospice patients and adults with special needs.

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