Creating an End of Life Plan for Peace of Mind

Welcome to the Living to 100 Club Podcast. Here's our host, Dr. Joseph Casciani.

Well, hello to everyone joining us today on our podcast. You're listening to the Living to 100 Club, and I'm your host, Joe Casciani. Before we introduce our guests, I'd like to remind everyone that I'm available for public speaking events, particularly to community organizations and senior groups. I'd love to talk to others about aging well, keeping a positive frame of mind, and making it over those hurdles. There's an option on my website to set up a call to arrange presentation for your group. I also offer a free 30-minute lifestyle audit. For individuals to look at lifestyle practices, attitudes, and outlook. This audit gives us an idea if one-on-one coaching with me may help to bounce back from challenges and setbacks. Set up a call with the button on my website to get started with this lifestyle audit. And one last item of self-promotion: if you're looking for a consultant or trainer on clinical topics, like dementia or depression, this is my wheelhouse. So feel free to contact me if there's a need in your organization. Contact options are on my website, again, livingto100.club. Now on to our podcast. Our guest for this podcast is Johanna Munson, an end-of-life navigator. In this conversation, we explore how Johanna offers families peace of mind as she helps them navigate through the myriad decisions to plan for a peaceful death. We discuss her role as a communicator with families, helping them to take the important steps and have the necessary conversations so they can honor the wishes of a loved one whose death may be imminent. Or sudden and unexpected. First, a little background. Johanna Munson is a highly practical yet deeply spiritual entrepreneur whose soul-centered leadership brings you peace of mind through end-of-life planning. As the CEO of End-of-Life Resources, she offers multiple entryways into the often challenging conversations around end-of-life planning. Including the End of Life Peace Plan and the End of Life Lounge Facebook group. Johanna was inspired to create her programs by the radically different experiences of the deaths of her mother in the ICU hooked up to tubes, incommunicado, and her father at home with hospice care surrounded by family. To turn the pain and guilt associated with her mom's loss into peace with her dad. And now others can benefit. Planning brings peace, and that is her wish for all. Johanna, welcome to our program.

Thank you so much, Joe. It's an honor to be here and to be able to speak to your listeners and share my story.

Great, great. I'm looking forward to this conversation. Thank you for joining us. I always begin by opening our program asking our guests to tell us a little bit about the journey that brought you to where you are today. I referenced some of it in the intro, but tell us a little bit more about the journey.

Yes, thank you. So it really came about because of the deaths of my mom and my dad. It will be 15 years ago next month that my mom died. She got a sudden diagnosis of advanced leukemia and There was no clue before that, that she was even ill. And they suggested that— they recommended that she go in the hospital and have chemo. That's what she chose to do. Ended up dying 5 weeks later. And we had never had any of these conversations, didn't know what she wanted, what mattered to her. We could only guess. And it was my dad and my 2 sisters. And it was really, really difficult. Some of this— decisions that we had to make. She ended up, as you said, unable to communicate, and so we didn't know what she would have wanted, and we really just had to guess. My dad, we thought he might die soon after because they were so, so close, and that often happens, or it can happen, but he lived 11 more years. And so over the course of that time, of course, we And did have conversations. I say, of course, but you know, it's not really of course. He was the one who started the process of having the conversations. And so it just made it easier in so, so many ways. So that was the sort of turning point that brought me to it. I've been in education for more than 30 years. I've been a parent. I've brought up kids and then sort of reverse parented my dad out of this life. And I have a coaching background. So that all combined to bring me to this point where I'm supporting others through this process.

Yeah, so the personal experiences with the mother and your father, plus just being so close and, you know, comfortable with educating others and helping them to get through challenges or learn new skills, learn new talents, this is This is the journey. This is where, how you got to where you are today with the End of Life Navigator. Yeah. So yeah, I'm sure this is very important to you and wanting to share what you learned, some of the painful steps. I'm sure it was very difficult with your mother not having had any of these conversations. I don't think that's so uncommon. I mean, it's certainly unplanned, unexpected, but it's not so uncommon, is it?

No, we don't want to face up to the fact that we are temporary beings on this planet and that reality is that we are all going to die at some point. I've been a spiritual seeker all my life looking for meaning just beyond the day-to-day existence, and so that's one reason why this work is so important to me. I saw my father change from someone with very little interest in what was beyond. He was a scientist, very much into the data. But as he got closer to the end of his life, we had some very, very deep spiritual conversations. And I feel like I still hear from him. He shows up as a crow, my mom shows up as a hummingbird. Who knows? But it brings me comfort.

Well, that's good. Yeah, we, uh, we learned to let go of some of those old patterns when we're approaching the difficult, challenging unknown. Yeah. So yeah, now you, you call yourself a navigator, um, end-of-life navigator. Why, why do you use that term?

Well, you know, Western culture has a hard time with dying and death. And there are a few cultures in the world that actually have traditions where these things are talked about, but I would say Americans are some of those in the other side. And so even starting the conversations can be scary. And so as I went through the training, I trained as a death doula. Turns out that there's an actual National Death Doula Day You've probably heard of birth doulas, but not so many people have heard of death doulas. And that's a term for people who guide people out of life. I decided I'm more interested in the advanced care planning side of things. And again, it's unknown territory. And because I've been through the weeds, I've scouted out the pitfalls. I know some of the routes to success that work for me, and I've had clients have great success with that. So I feel like I'm a guide, and life is a journey, and we can always use another guide to help us find a way.

Yeah, so you're focused more on the pre-death planning experience, that kind of making those tough decisions. I know we'll talk more about that a little bit. And the death doula is a guide to what? Help.

Yes, so death doulas actually work with a family at their loved one's end of life. And when my father was in his last weeks, we— he was definitely on hospice. So important to bring in hospice as soon as there's a diagnosis of 6 months or less to live. Average is like 7 days for hospice care, but you can get that support well before the actual end of life. And she brought in just this awareness that, yes, this was the end. How can we support him in actually leaving this earth in a more— just what's the right word— it's with ease, with confidence, with that peace. It's really peace of mind.

Yeah, sure.

That, you know, he had done— he had said what he needed to say. We had said what we needed to say. Those conversations were not lingering. No guilt or regret. And it just makes such a difference. And so by doing advanced care planning, you know, you can decide, yes, at the end of my life, I would like somebody like that in place, or maybe somebody in your family is capable of stepping up to that role. But there's so much more that's possible because death is sacred. I was honored to be at the actual moment of death with my father-in-law, then my mother-in-law, my mom. My dad died in the early morning and we weren't there, but there is that moment when they're alive and then something leaves, and you know, it's not an emergency, it's a time to just honor them, honor your relationship with them, and if we can be intentional about it, it's it's a blessing that lasts the rest of your life.

Sure, yeah, a richer experience, I would say. I've been at the deaths of two of my siblings, neither of my parents I was around for, but I was at the deaths of two of my sisters, and it's a tough experience, but you're right, when you're there, it's much easier to process it and be present I learned when I, when I was working with hospice organizations and training, I always learned that there's sometimes there's very little that we can do as a mental health professional, and especially working with the dying patient. There's— it's not like we have the answers. It's more like just being present and reassurance. I mean, we know that one of the biggest fears is dying alone, right? Dying alone. So that's That's why it's just good to be there and be present, even if we can't, you know, fix anything. We're helpless, right?

Yeah, and apparently the last sense to go is hearing. And so even if the dying person can't speak, they can still take in your presence, both, you know, your voice, your touch, and that level of comfort, you know, it's It's priceless.

Yeah. So you mentioned, um, the difficulty that we have facing death. I mean, um, someone told me talking about death is like staring at the sun. It's not easy to do. And, you know, you've, you've shared, you know, some of your experience, and you've learned a lot from others, I'm sure. But what is it that, um, what is it that drives us to be so defended against this? What do you think?

Well, research has shown that the more unattractive or dreaded a task is, the more likely we are to put it off. It comes from a study, The Productivity Project, by Chris Bailey, and there are 5 elements that make a task unattractive. And the first one is boring, uh, second is difficulty, how difficult it is, third is how frustrating it is, Next would be how unstructured or unclear it is. And then lastly, it's either lacking in personal meaning or carries too much personal meaning. So it's too much to handle. And so making these end-of-life decisions like ticks all those boxes.

Yeah, it fits all of them, right? Yeah. Yeah.

It's boring. We got to think of all the details and we just want a checklist here. I've done this, done this, done that. It's difficult. It can be time-consuming, could be expensive, scary, and emotional. So it's definitely challenging in that way. It's frustrating because we have to deal with others. It's not just making decisions for ourselves, but others are impacted by those decisions. And it doesn't always go smoothly or according to what we think we would want. The— in terms of structure and clarity, we just don't know where to begin. It just feels overwhelming. And then the personal meaning one is interesting. Some people might think, I don't need to do this, I don't need a will because I don't have that much to pass on. It's very— you know, it can be a lot more expensive if you don't have any of this in place. And also then the medical decision-making, everybody over the age of 18 should have an advanced directive or a living will. It's— there are just so many basic things that, that make it easier.

So yeah, yeah, yeah. So just difficult. And as you say, the, the important part is wrestling with that, coming to terms with it. It's, it's a fact of life. I mean, nobody leaves this planet alive, right? So nope. You have a very nice program, semi-structured program, that goes through a lot of the important decisions, a lot of the important steps. Can you share with our listeners this 10-week program?

I'd love to. So it's my signature program, is called the End of Life Peace Plan, and it's practical. We start with a checklist where you lay it— we lay out the decisions that need to be made ahead of time, make sure that you have covered all of those. We organize all of your information in a binder So your loved ones know exactly where to look when the unthinkable happens. And this can happen at any point, right? It's not just aging and end of life. Think of the 95, 100-year-old, right? Accidents happen. And so we never know when we might need this. So there's the practical side. Then there's the more human side. We want to think about your legacy. How do you want to be remembered? What matters to you now? I have a client who went through this program and decided as a result of it that she was ready to downsize. She didn't want to have the house with the guest rooms and the big yard that she had to take care of, and she actually restructured her life because of this. And now she gets together with her kids and their grandkids in a special location every year, or she goes to visit, visit them. And so she's really freed up some fun, she's freed up the energy and made that real change so that her life is much more meaningful now. The third part is the most important, and that is to have these conversations. And what's one really unique thing about my program is that 3 of the sessions are with other people, right? So you're making this plan for yourself or with a partner, but there's so many other people who are involved. You need to consider, right, as you age, where do you want to live? Well, it's a good idea to talk to your kids about that. Who's going to be around to help you out? Are you going to need to go into assisted living? Do you have the funds to do that? So we get really in-depth about these things that once you've made the decisions. I know the conversations are difficult, but I'm trained as a communications coach, and so it's my, you know, there's my joy to see these conversations happen. So we meet 10 sessions, meet 10 times online, usually about an hour. And yeah, we start with that assessment, then we look at the foundational work, doing the reflecting making the choices, and then what I call clearing the way, making sure everything's organized in that binder. If there are relationships and personal goals that might be sort of unfinished business, we make sure those get addressed. And then, you know, conversations. How many times have we wished that we could have one more conversation with a loved one? So we tell the people right now what we want to share with you.

What I really like about this is its semi-structured nature. It's not so open-ended and it's not so fixed that people have to go through a rigid step-by-step, check the boxes. So you do have agenda items where you do have topics that you want to cover, but there's some flow back and forth around that. I think that's really good because We certainly don't want 10 hours of, how do you feel today, and what do you want to talk about?

No, there's definitely an agenda, and the fun part is, you know, what comes out, the growth that happens, the realizations that, yeah, I'm ready to be done with this part, ready to move on to this part. I love that in other episodes I've heard so many, a couple of times, that our 60s are actually our most productive decade, right?

Yes, for the same research.

Yeah, yeah. And so why not, you know, make more of these whatever time we have left? And that clarity can come through doing this work.

Yeah, that's also so important, I think, because, I mean, there are times that We want to plan ahead. We don't want to wait until the person, you know, is really— death is imminent and it's time to wrestle with these decisions. We really want to plan ahead, put some of these pieces in place. Of course, they can change, you know, from month to month or year to year, they might change. But we can put it in place and we can set that aside and we don't have to— we're not bothered by that. We're not uneasy about, you know, approaching those topics again. So you do, you do have the opportunity to kind of put this in a package and let's put it on the shelf for a while. We're good with it and we can look at it again when we need to. And of course there are times that death is unexpected and we're not ready for it and the family is not ready for it. So certainly having this package completed makes a big difference. Yes. So are all family members involved, all the adult children, or how do you select who sits?

Yeah, so as I said, I really enjoy doing the advanced care planning the most. So those who want to create a roadmap for their loved ones to follow, they are the ideal clients. But of course, we do need to have the— include adult children. Maybe you want to help a parent through this. Well, you got to put your own oxygen mask on first, right? If you haven't been through the process, how can you really expect somebody else to do this? And that experience will help you as you address some of the more uncomfortable topics.

Yeah.

So it's definitely, you know, working with the individual and/or with their partner to start with. And then, as I mentioned, we bring in other family members in a couple of the sessions, and we'll give you some, you know, overall ideas of things to talk about and then send you off into a sort of breakout room. The magic of Zoom lets us do that. And so I'm not actually there, but you guys can have a conversation and then come back and, you know, will debrief sort of what went on.

Yeah, that's right. That's good. It's like asking you to step out of the room so they can finish their conversation.

Exactly.

How about other professionals? Do you have attorneys, financial planners, accountants? Do they come in ever?

Yes, I work with people all over the country, and so I have some contacts in— I'm actually in the Pacific Northwest in the Seattle area, so I have plenty of local contacts. I do have a procedure for people to identify somebody in their own area if they don't have a will and they need a lawyer, they don't have a financial advisor. And yes, I'm a consultant. I'm not licensed in any of those professions, but I consider myself sort of an overseer of the whole process. Somebody who makes sure that, yeah, you have this in place, you have that in place, and you don't have to worry about those, you know, do I have everything covered?

Almost like a broker bringing in different specialties to make sure it's a nice complete comprehensive package. That makes sense.

Yeah, that's a great way to put it.

So are there times that families start out but don't want to continue or don't want to complete it? Have you seen that?

I, so I go for whatever they consider would be a quick win, right? So Getting the checklist covered is usually the first thing so they know where they stand. But I want them to experience success right away. And so it may be checking on that will and the advanced directive, make sure that those power of attorney are still who they want to be. Once they get that done, it's like, oh, well, now I can have a conversation with that person. They know what the next step is. The accountability is really key. So the way that it's set up is that we meet on a weekly basis, and so you have specific action tasks that you need to do before we meet again. And if it doesn't happen, you know, we talk about why, why that is. That's where my coaching background helps out a lot because, yeah, there are fears, there are established communication patterns that we inherited. You know, my family didn't talk about death when I was young, and only because of my dad and his willingness was— were we able to change that.

And sure, yeah, and you talk about the importance of communication and being able to resolve differences, because I can imagine this process, as good as it is, it doesn't always go so smooth. No, right? You got people kind of butting heads or different opinions. No, I don't want to do this. Yes, you should do that. Yeah, so you reach impasses, I can imagine, from time to time.

Yeah, and there's often, um, we make assumptions about what other people are thinking or what they want, and so we kind of back down that ladder of thinking we know what others are thinking.

Yeah.

And then get— just stick to the facts. Okay, this is what I said, this is what you said. And, you know, revisit it. And sometimes people do need a break, and we come back in a week or two. And—

oh, really? Yeah. So that you'll take off, or you'll postpone for a week?

That's not ideal because 10 weeks is already a lot of time to to spend on this. And so that commitment to getting it done in that timeframe is really important.

Yeah. And I like what you said about looking for the small wins, the small successes, so they feel like there's some progress here. And I guess there's also times when you know what they need, which is different from what they want.

Right. We call it the broccoli and the chocolate. The chocolate is what they want. The broccoli is what they need.

So we can't be, uh, too insistent on, on the broccoli, right? I'm sure that happens too. And they say, no, I'm gonna, I'm gonna live in my big house. I know my husband died and I can manage this 4-bedroom home. And yeah, that's not the best decision, but that's where that person is, right? So, right, yeah, recognize those, those desires and those preferences, find ways to make sure he or she can, can do it successfully.

Yeah, yeah.

So 10 weeks is a, is a good time, long time, as you mentioned, 10 hours, uh, time to explore a lot of these questions and deal with some of the unknowns and have them do the homework and research. Yeah, in the visits. Yeah. How long have you been doing this, Johanna?

Well, I consider it, you know, about 15 years because of my work with, with my parents and my in-laws. Um, officially launched the business 2 years ago. It's, it's been so much fun to just grow, grow the community. When we do this work in community, it really does change the culture.

Yeah, so there's the informal experience and then there's the formal experience with the business itself. What happens when there's no family around, that you're dealing with just an individual, just one-on-one? I'm sure that happens from time to time.

Yes, as the baby boomers are aging and losing family members, people don't have as many children, and so they might not have family to step in. There are various avenues to go with that. You can— if you have close friends, they can fulfill the roles of power of attorney. You can also designate a lawyer or another professional to be your financial power of attorney. There are guardianship programs in each state with licensed professionals to take on the medical power of attorney role. And yes, population ages, this becomes more and more of an issue. Each county in the US has what's called an Area Agency on Aging, AAA, Area Agency on Aging. I'm sure you're familiar with that. And they have a lot of resources to help people who don't have family who can step in. And so that's a great way to go. There are elder care specialists, people who do this for a living, you know. So I'm not in that position where I would help you find a person to come and do caregiving or do home maintenance. But there definitely are people who have that calling and serve in that role.

So what would you recommend to a couple or a single individual who has no family and no children and they want to be sure there's somebody around to take care of their estate or take care of and help with medical decisions? This isn't the Area Agency on Aging task or elder care professionals, or how does someone go about finding an entity or a resource?

Yeah, in the End of Life Peace Plan, I— we'd go through this exercise called the Circle of Caring, and you look at, you know, people who are close to you and then go out a little bit further, maybe some interest groups or religious organizations, and then beyond that would be the professional people who can step in in a professional capacity. And that includes looking at assisted living, looking at nursing home if that's appropriate. And you know, it is a huge financial burden on elderly to handle all of that. And so that we look at ways to make sure that that support is in place and do it ahead of time, right? Go visit some assisted living places. Think about some options for, you know, other places you might be able to move to where your needs are met by others.

Sure. Yeah, that's really the name of the game, isn't it? To do this in advance and to do some planning and preparation wherever we are, whatever is happening, If we're living in our own home, making proper adjustments so we can continue to live there. If we're going to be moving, how to downsize and how to locate another home or residential setting. It's all about doing this in advance because we're much better when we have time to make informed decisions than, than at the last minute when we don't have so many choices. And that's what you're really talking about too, helping people do this in advance.

It's—

yeah, yeah, just smart. Sure. Well, just wondering, you have a Facebook group, I understand, where people can have this dialogue and conversation. Tell us about that.

Yeah, so I call it the End of Life Lounge, trying to make it a little kind of a friendly, warm place. Bring your cup of tea or your cocktail and hang out. I post all kinds of information there, articles that I find, invitations to just have a conversation, start a conversation with me, with other people who are thinking about these topics, because that can be easier to do that first with somebody who's not directly involved. I do weekly live sessions with— sometimes with this card game called the Death Deck. Sometimes I have guest speakers on or I'll just address a topic that I think is of general interest. And so that's a way to sort of get a feel for who I am, how I work, and what it might be like to work with me on a one-on-one basis.

Okay, so these are live events on Facebook that people can join and interact with you?

Yes, and they're also available on replay. So usually I do the lives on Wednesday afternoons. Pacific time, but they're available to watch.

So how do people find you? How would they, how would they go about— I mean, well, let me ask you then, your website. Tell us your website.

Yes, my website is johannamunson.com. Very easy, j-o-h-a-n-n-a-m-u-n-s-o-n.com. And I'm offering special for the listeners, uh, is a what I call my customized legacy plan evaluation, where we look at how you want to be remembered. So we'll spend 45 minutes reviewing what you have in place, and I'll give you some high-level feedback. And you can schedule that on the About page on my website. Again, that's johannamunson.com. And yeah, it's a chance to meet on Zoom and see how we might together.

So that's a complimentary session, the life legacy plan, what we have in place.

Yes, exactly.

Great, that's great. So people can set that up on your About page on your website?

Yes.

Great. Well, I always like to wrap up by asking our guests, what, uh, what would you like our listeners to take away from today's conversation?

Well, it takes courage to do this work, and so I want to honor you for bringing this conversation to your listeners and to all who are listening, offer you the knowledge that it will bring you peace of mind. The rewards of doing the work are well worth it. You'll deepen your relationship with yourself and with others. Facing up to the fact that we're mortal brings such a deep appreciation that we're alive right now. And through doing this, we grow in love and acceptance. If we do it in community, we can really change the culture.

That's great. Thank you. Yeah, the difficult things in life can be the most rewarding, right? I mean, we can't look for the easy way out. That's not always the answer. Sometimes maybe, but not always. So yeah, thanks for, thanks for sharing that. Before we wrap up, Joanna, I just want to remind our listeners about a co-sponsor for this program, A Mighty Good Time. Are you looking for ways to engage and stay active? Check out amightygoodtime.com. It's a one-stop shop for events and activities for those 50 and over. It's free to search and it's free to post. amightygoodtime.com. Now be sure to visit the Living to 100 Club website to sign up for my weekly podcast announcements and monthly newsletters.. And while you're there, be sure to download a free copy of my 9 Tips for Living Longer. Lastly, pick up a copy of my book, Living Longer Is the New Normal, all about maintaining a positive mindset in all we do. It's on Amazon as an ebook or in hard copy form. We've been talking today with Johanna Munson. Again, Johanna's— your website is johannamunson.com so people can reach out to you and connect you that way, and they can also avail themselves of this complimentary Life Legacy session. That's very generous of you.

Well, thank you so much for, for inviting me on, Joe, and it's such a pleasure to, to talk with you and to, to feel your energy and your passion for making the most of our— each of our lives.

Well, thanks so much for that. I love what I do, that's the best part, so I'm glad you are part of my program today and I hope people will contact you and start to look at the joy and benefit of, you know, moving past these difficult decisions. Yeah, so great. So thanks again, Johanna, and thanks to all of our listeners for tuning in today. Hope to see you next time.

Thank you.

Hi, I'm Laurie LeBay, and I wanted to tell you about Alzheimer Speaks, which is another great podcast. You see, my own mother lived with dementia for 30 years, and I felt lost. Did you know every 3 seconds someone in in the world is being diagnosed with dementia, odds are it's going to hit your families too. We want to help you connect to services, products, tools, research, and stories so you can be prepared. Please subscribe to Alzheimer Speaks on your favorite podcast platform.