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Speaker 3 00:01:23 I am gonna die someday. And you know what? You are too. That is, uh, partly, uh, something that we get to share in this human experience between all of us. Michael Conley today is gonna join us, uh, with his book Journey's End. And I gotta tell you in a quick read, just great bits of nuggets. The psychology and wellbeing depends on our belief that we are valuable contributors to a meaningful world. Some of this stuff and how we look at death is amazing for us, but in sometimes it becomes something that blocks us from being able to advocate best for those that we love. Stay tuned today as we talk about the Journeys in with Michael Conley on the Parent Projects Podcast.
Speaker 4 00:02:24 You're listening to Parent Projects, a family Media and Technology Group Production. Now, here's your host, Tony Siber.
Speaker 3 00:02:34 Hey, today we're gonna be chatting with author of the Medical Industry. He's an insider, Michael Connolly, about how we approach end-of-life care in America. We're gonna talk about some of the practical benefits that are, uh, that we're, we can have when we face death a little bit differently when we look at it as a reality other than just something that we try to Medicalize. Michael's book, the Journeys End, it's an investigation into death and dying in Modern America. And this is gonna highlight some of the areas that we discussed today. I want to welcome you, Michael. Welcome to the Parent Projects podcast. It's a pleasure to be with you. Hey, so this is, I, you know, we, we share a l a lot of things in our background, faith and in our outlook and stuff like that is, is one big one, which helps us, I think probably be able to approach, uh, the experience and the conversation of death, um, relatively openly, pretty openly here.
Speaker 3 00:03:24 But there are gonna be those of you that are joining us online, um, that this is gonna be a really difficult subject. So, uh, if, you know, you get into this, uh, just I'll put up front that caveat up in the front, um, it's a good time to sit and reflect on use experienced people to help you process death if it's a difficult thing for you. Look for psychologists and psychiatrists and other folks that can help you deal with those challenges there and unpack some of that emotional baggage. But today we're gonna, we're gonna really tackle some of that. And this is that warning in that caveat up front. We're gonna talk about some of those key dynamics that make this so sinking difficult at end of life. And we're gonna give some real tips and tools for how you could overcome that and be the best advocate you can possibly be.
Speaker 3 00:04:09 Moving yourself from guilt and fear and leaving yourself open to find, man, just a little bit of love and laughter in those end of days as you advocate for your loved one. So, Michael, that is, it's, it's a big lift that we got today. Thanks for joining me to do it, man. Are you ready to dive in? I'm ready. Okay. Oh, we've got those of you by the way that are following us, you can grab
[email protected] if you're coming in from one of the social media feeds. And up there, upper right hand corner, you hit that podcast and you can join us. If you've got questions you wanna put up, there's an open chat up there. Feel free to throw those questions in there and, uh, we will take them into the show as we kind of make our way through it. So, MI lo Michael, give us a, a little bit of your, your background, will you, and how it is that you came to spend so much time and attention and care so much about the end of life and what this journey brings for us.
Speaker 3 00:05:00 So, um, I, I started in healthcare when I was 16. And, uh, my first jobs were an orderly, a security guard and a landscaper. And I fell in love with healthcare. And I, I thought that working in a hospital was like a microcosm of society. You had every level of society from, uh, the most sophisticated and affluent to the, you know, uh, indigent to, um, you know, the, the housekeeping staff, maintenance staff. And we all lived together all day long, and it, it was just a wonderful experience. So I've spent my life in healthcare that from the day I fell in love with the day I started those jobs. And, um, I've been, become progressively frustrated over the, um, lack of, uh, healthcare's ability to make change and, uh, adjust. And it's become so bureaucratic. And one of the worst areas, in my opinion in healthcare is how we take care of the elderly.
Speaker 3 00:06:18 Yeah. Well, and end, end of life issues have a lot of dynamics. When you're, when you're, I I think, we'll, we'll talk through some of those advocate, you know, when you're advocating from someplace else, but it seems like it really kind of starts in our own view of death. What, what are you seem to have a, a grasp against that. What, what helps inform how you look at death? What, what are the bo what are those markers or what, how is it that you look at death if someone were to, to kind of listen to what we're talking about today, to see where you're coming from? So, ironically, it's asking yourself what it means to be alive. And, and, uh, so you know, it is, uh, you know, is helping others. An important part of your life is being aware of the people you're around, an important part of your life.
Speaker 3 00:07:11 And, um, and then think about if you lose those things, um, what, um, you know, I mean, the most common issue today is getting Alzheimer's. And so do you still want to get all the health system has to offer if you have Alzheimer's, and it's likely that you will. Um, so, you know, a common example is you get an infection. Well, in the old days, that was just a gift, and now you'll get an antibiotic <laugh> and, you know, you'll continue not knowing anybody for another five years. Yeah. And so, um, really thinking through and, and then what what'll happen is you'll have care choices, uh, at the end of life, and very specific ones, uh, whether it's ventilators or whether it's going to a hospital or, uh, whether it's a feeding tube, and really understanding what those things are and whether you really want them, and under what conditions do you really want them.
Speaker 3 00:08:19 Yeah. Having, being informed about what life means for you and, uh, and, and your place against that seems like it really is a, it's one of the biggest filters against your ability to understand how it should come to an end, or when your mission's complete, or when your, uh, your work may be done at some level. And when we, we, we, as, as fast as these things start to fly, we're gonna take, we're gonna take a knee here for a second for our, uh, our, for our sponsor. But when we jump back into this, there's a lot of people, and there's a lot of dynamics of, uh, of where people, individual people that are all on their own individual journeys, or they've got other influences professionally or personally that are influencing where they come to the table. I'd like to sit down and when, uh, when we come back, let's break down some of those dynamics that are at play while we're trying to figure ourself out at the end of life here this week, as we're talking about a journey's end with Michael Connolly, author of book,
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Speaker 3 00:10:22 Hey, and welcome back. This week we're with Michael Connolly, the Journey's in, uh, and, uh, you know, healthcare Insider. He's someone who's had a great perspective to understand that machine of healthcare that sits around us that eventually tends to play a role in most of our lives. Unless, uh, and and honestly, it's, it's, it's one that will take off on its own unless we've got some specific ways that we want to approach it and have made ourselves heard about that. So, Michael, thanks for joining us. We're gonna dig into some of this other stuff real quick. If, uh, if you do follow this and you're listening to the program, if you like how we're challenging stuff and we're, we're bringing out some useful information, I just help us spread this mission and, and help us spread the word by liking, subscribing down below, sharing our podcast out with others that could make use of that and provide some feedback.
Speaker 3 00:11:10 You can catch
[email protected] up off the podcast page and give the feedback. Let us know what you're looking for, and we are happy to run out and go get that information and bring those tips to the table. So, um, okay. Michael Dynamics, man, I have a list like this long from our previous conversations that we've had up here. So we've got doctors, we've got third parties, we've got our own issues, we've got other family members, we've got treatment and how testing gets done about stuff. We've got general looks on medicine. Let's, uh, let's dive in against this. Talk to us about the healthcare, the healthcare industry in general, without pointing a finger or plugging at it. What are these dynamics that doctors have weighing on them? This most informed, educated person, typically that we turn to in times of, of trouble or, or medical duress or something that might be a natural part of, of death?
Speaker 3 00:12:06 Because that involves that. What, what in your experiences, what, what's going on with them? So, I mean, they spent, uh, decades learning how to cure you <laugh>. Yeah. And, and, and, uh, they were taught in that process that you dying is failure. Hmm. And the, the dilemma is that, you know, if you're 30 or 40 years old, that's, you know, purely you want to be saved. Yeah. But if you're 80, maybe you don't wanna be saved. And, and so, but their thought process is you're still, they don't distinguish that you're 40 or 80. They're just gonna try to save you. And, and so furthermore, then they'll be sued if they don't do everything for you. Yeah, yeah. And so they're, every doctor is always afraid of being sued. So that's a, that's another dynamic. Uh, a third dynamic is that the, the safest place when you're older isn't home.
Speaker 3 00:13:16 And, um, if you wanna stay there, uh, you're gonna panic. When something goes wrong, somebody falls, you're, and then you're gonna call 9 1 1, and then you're gonna go to the hospital and you're gonna end up in I c u <laugh>. That's not a good thing. But unless you've thought about this stuff, and unless you are comfortable and you have some place to reach out to, to sort of walk you through, no, you don't need to go to the emergency room, then, uh, you know, uh, then things can change. But once you get in that hospital, the machine begins Yeah. And they're gonna start diagnosing and everything else. Now, one thing that was, uh, that you brought up earlier in one of our conversations is that a lot of the medical procedures that we use, lifesaving medical procedures, a lot of the stuff in general, it was likely not tested on older people or, or, or, you know, people of older age.
Speaker 3 00:14:17 So our understanding maybe of side effects or what, what impacts it might have on other, we, we hear that cause and effect, right. One thing, and I think we all just know it. Right? You, you, we've done something, we've taken something that dealt with this, but then I got this to deal with, or we went in and we got this worked on, and I ended up with this thing over here. There's a, there's a dynamic as well of, of, of that in medicine. True. Absolutely. I mean, the, uh, the fact is that they test up on young people. They don't test it on old people. Yeah. And one of the interesting, uh, statistics is how many people die, uh, shortly after they go to the emergency room, uh, in old age because it's so disorienting, right. I mean, they're, they, they're fragile with all kinds of problems.
Speaker 3 00:15:06 And once they get in there and they, they lose all that there is like 90, there's a high death rate for people 90 days after an ER visit when they're very old. Yeah. So it's really understanding what works and, and what doesn't work, uh, as you age. Well, and there is, uh, I mean, we see it also specifically in Alzheimer's or or other form of forms of dementia, right. Where that, that slope, as soon as you remove them from the home, the, the familiarity of those things that it, it just, it undoes them. And sometimes it, well, that recovery never comes all the way back from that when they, when they come back, even, even when they settle back at the house, the is trauma is the tra, I don't know if trauma is the right word to use there, but there, there's some level of definite shock to the system and perhaps even some level of trauma too to that, that you're dealing with.
Speaker 3 00:16:00 Instead of just dealing with life <laugh>, you're now dealing with what you witnessed or went through while going through life. Well, I'll give you a quick little story about my sister. Okay. Uh, my sister, uh, uh, died of C O P D, which, you know, she can't breathe. She was a heavy smoker. And, um, I would say about 18 months for, you know, short of dying. So she was well advanced with C O P D. Uh, she wasn't able to get her steroid, uh, prescription refilled. That's another story. And she couldn't breathe. So she goes to the emergency room, she ends up being hospitalized for two and a half days, and they were diagnosing her as having heart failure, which was not all she needed was steroids. And when she got out of the hospital, she turned to me and said, we don't need capital punishment in Wisconsin.
Speaker 3 00:16:54 We just need to stay in the hospital. And after that, we put her into hospice and she was never happier. Yeah. And, and so, but she never went back to that hosp, she never went to any hospital. It was, it's a great hospital. I mean, that's where I started working. It was it, but it's just the way the system works, you know, and, and in that system, um, you know, some other things that work against us in the medical system in general, palliative care or, or caring for those just kind of working through those, that's, that's not, that's really not a thing of that medical system. Is that right? That's not, that's not something that's generally a, a, a part of that yet full in full force across the country. Yes. So the, especially Appal palliative care was created in 2006, and it was in response to the fact that our end of life care is so poorly done.
Speaker 3 00:17:51 And, and so it recognized that we needed to change this, but then the payment system doesn't really reimburse for palliative care. Yeah. And so where it would be very valuable would be in an outpatient setting. So, you know, going to a palliative care doctor or a palliative care nurse to complete your advanced directives and discussing them, you know, annually thereafter would be wonderfully beneficial. But those doctors don't exist, and you can't get access to that. The only way they use it in the health system is there are palliative care teams that are called into I C U when people don't, you know, the, they don't know how to turn anything off and they need somebody to talk to 'em about it. Yeah. And that's how they end up being used. And the, uh, there's some economics as to why that pays for itself. But, uh, the point is that that's way too late.
Speaker 3 00:18:51 Well, and, and there is a, so, you know, that takeaway against that is the economics. And, and by now, many people are probably understanding in their parent project if they're along in it more than a couple of months, economics plays a role in this funds fuel mission. There's a, you know, there's a, whether it's economics of what your parents can afford or what the family can afford to chip in, or if you get into a, a entitlement system, a Medicaid, a Medicare, uh, any, any of these types, even if you're working off a, a long-term care insurance policy, right? They're still prescribed what's covered and what's not covered. Uh, and they're still trying to get that language and that understanding there, money will play a role at some point in time. What you don't want to do is find yourself where the money is set, the conditions, and they're the only conditions you feel you can work within.
Speaker 3 00:19:43 You're not able to back up away from that problem and tackle, you know, the intent of what your loved one really wants to achieve. Don't you gotta be careful not, I think get to get sucked to the light, get, get so close into it, um, you know, once in, in the hospital settings a great place that that can happen. A lot of stuff going on. Right. So that's one of the policy changes I feel very strongly about in the book. Okay. And that is that, um, like my sister never heard from her, uh, physicians about palliative care or hospice, but they did offer her a lung transplant now, and a lung transplant would've been millions of dollars and it wouldn't have worked.
Speaker 3 00:20:30 But they didn't pay for home care. They didn't support. And so what I'm saying is that, and, and if you had a conversation with a palliative care doctor, I'm suggesting that before you get transplants, um, one of my favorite statistics is that 6% of all healthcare spending is for kidney dialysis. Wow. And, and many of those people very seldom live for more than a year, and yet they automatically go on dialysis if they go into kidney failure without a palliative care consultation without really understanding what that means. Okay. And that's just, that's just, that's the way the system knows what, that's the way the system happens to function today. Right. It pays, it, it pays for things that we can measure. Right. And we can't measure conversations. We can't measure home care. Uh, and therefore it, the insurance model doesn't pay for stuff that would save money for everybody.
Speaker 3 00:21:36 Right. Uh, and, and would be much more beneficial to families, but it will pay for things that don't work. Right. So then, you know, okay, so there, that's the medical system that you're walking into. If you're handing, if you're looking for that to solve your problem, that's likely where it's going to go, what it might move away from or, or why the conditions are gonna be set. So let's, let's come into some of the other major dynamics here. Uh, let's talk about our family and us and our outlooks of, of death and life or what may or may not have been prepared kind of coming into that. In, uh, in the book one thing, you, you and I both share a Catholic faith, uh, and, and in that, I, I think in that, um, one thing that, you know, you just really grab, grabbed me by the throat by was looking at the use of the rosary, which are used off my Catholics, in order to kind of, to prey and to work through things.
Speaker 3 00:22:35 And the sorrow form mysteries in particular where we may have, just before I just looked at a focus of Christ's death and what that came and what that may have meant for us. But being to u able to use that to absorb and to digest the death process, which a hundred percent of us faith or face at some point in time, what, um, I thought that was a great and agreed useful tool for me when it came in. But, but also just really highlighted, I'm, I'm a veteran. I lost, I've lost friends, I've lost, um, you know, colleagues. I've, I've been at myself at times where I didn't know if I was gonna come out of the moment. I've lost my, my own little sister just a few months ago. So I, I can understand and I've had to face a, a lot of death.
Speaker 3 00:23:21 But you still really challenge as to whether or not I fully, um, am prepared to not allow my understanding of death to overly influence what my family members experience of death is or what they want. Cuz ultimately, I'm here to be an advocate for them in that case in time. Right. What are, what are some things you can thi, I mean, what what can help us process that or maybe keep us from maybe getting too deep into our own problem instead of being able to advocate Any, anything that comes to mind there? Well, I mean, the, the, the core problem is that, um, we don't wanna talk about it, period. I mean, it, it, that is the, um, and, and actually, I, I have a little visual here. There's a, a acute card game that people have come up with and, uh, like it, and it goes to have my family with me, and it would be a child and a parent going through the card game, and they answer the question, this is very important to me.
Speaker 3 00:24:23 This isn't important to me. And then you sort to the most important items. And then you have a, so you, this is a mechanism to have a conversation. It's a, uh, because your mom and dad don't wanna have the conversation, and you even want it less than they do <laugh>. And so it, it is like, you know, it's like giving your kid sex education. You just don't wanna do it. And so, uh, but it's important. You know, it's like it's, and um, and so, uh, and it helps it, and actually after people do it, they feel great. It's sort of like you feel you don't wanna exercise, but after you do it, you feel great. Well, you feel great after having the conversation. Now, part of it is, is learning about things, learning about, you know, what treatments you, you know, like let's start with do you wanna die at home?
Speaker 3 00:25:21 And, and most people do. Like 80% of everybody wants to die at home. Well, I gotta do for you. It won't happen unless you've done a bunch of things to set that up in place. So, um, you know, it, it is, um, you know, the, the sorrowful misre, it starts out with denial. The first thing is denial. Then there's, there's agony there. This is not easy stuff. And, and so, um, it, it is working your way through it, but it's very rewarding. Well, when you actually do it. Yeah. And, uh, and you, it frees you, it, you know, um, you know, one of my favorite things right now is like, I'm old enough not to worry too much about prevention. There's a great, there's a great quote from, uh, somebody I have in the book that she says, I don't wanna know about anything. I don't feel so, you know, I'm not going to look for whether I've got, you know, um, colon cancer or not.
Speaker 3 00:26:26 It's like, if I have it at this point, it, it is what it is. Now. That's, that's my choice. So a lot of people would, would have a different view of it. But I, I just raised that as a, a way of, of thinking. And then, then is sort of the final release for the family and for you is that in old age, you don't have to fight. You know, you don't have to throw everything to keep alive. Now, the problem with the children is they never want to lose their parent. And so when they're their, you know, at that moment and say, you know, well, there's nothing more we can do. And doctors don't like to say that because there generally is something they can do. But when you get to that moment where there's nothing you can, you, you, you're still gonna, you're programmed to say, well, what about, isn't there anything isn't there?
Speaker 3 00:27:22 And, and that is not good. Yeah. It, well, it comes. Yeah. Yeah, yeah. It, it come, it seems to come from potentially that, that place of fear rather than, uh, that place of understanding court acceptance of, of where those things are at. Uh, and, and that is, um, that's a lot for doctors to pick up. That's not one thing that we kind of actually glossed over too for the doctors, or whether it be a family member or anything else, is the totality of just, um, of death as you are working through all of that can, um, grief on our soul. And as we work through this and our, on our mind, maybe less our soul so much as our, as our mind and our own processing of that and our own understanding of stuff. I can can imagine the difficulty of medical professionals in having to consistently deal with death one time after another if they, if they haven't been able to address their own, you know, what its role plays in their own life or where those are at every time they've got someone that slides, especially when, and then you pile on the legal implications of pressures, the risk adverse nature, the, um, responsibility they owe, not just to the patient, but to the profession in general.
Speaker 3 00:28:36 Um, those that man, that is a complicated kind of ball of, of emotion that seems, even though in a, in a close itself, as if it's unemotional and not emotional with factual statements. And it's almost like you can get lost in the facts. So one of the really important things here that causes problems is the word hope.
Speaker 3 00:29:02 So, you know, for example, people don't like to go to hospice because it's symbolically means to them they've given up hope. Oh, that's a misuse of hope. Got it. Yeah. Yeah. And, and, and the truth is, your life expectancy is longer in hospice than not going into hospice. Yeah. Um, but that is counterintuitive. Uh, and doctors have trouble believing that's true. But it is. Yeah. Um, so, um, and, and they're caught in this trap where if they, if they tell you you're dying, they, they're taking away your hope. So they don't wanna tell you that. And it's only if you free them, if you, and even if you free 'em, they might not feel comfortable doing it. But you, you, you need to, um, uh, understand that we end up having unrealistic hope. Our family members have unrealistic hope. We have unrealistic hope. And it's, it, it, uh, and hope's an important thing.
Speaker 3 00:30:10 It is, I mean, it, you don't wanna give up on hope. And so you need to frame it in your head that you're not giving up hope. You're just accepting the reality of the situation or, or maybe even where you're playing, where you're placing that hope. Yeah. Right. And that, and that's probably a reason why faith may play. It plays a big role for your life. I, I think it plays a big role for mine, but for others that are able to face death and work through death that I've witnessed in my life and experiences that placing that hope in their faith, uh, that they, that the what, like me, that what it was they were supposed to accomplish was accomplished. Right. Or that they, they, those things. And so they can look into the hope of, of, of, um, transcendence and being able to transcend.
Speaker 3 00:30:54 I think that's probably a, a huge role, whether it's a Christian outlook or any faith outlook, understanding transcendence, you know, having a, um, that belief of that, that higher power or that there's something there, um, I think probably plays a big role placing hope in that instead of hope, you know, that your fingers on the edge of the cliff don't fall out when inevitable, you know, it's inevitable, eventually it's going to happen. You can't hang there forever. That's not, that's not realistic. And that's, um, that's maybe misplacing our, our hope in the wall. And, and so another important psychology issue here is a concept of legacy. Okay? And, and so, uh, we all have a desire to have a legacy. Uh, that's how when we're gone, we will be remembered. And, um, there, if, if you haven't thought about the legacy you want, you are gonna keep wanting to postpone dime <laugh> you, because you have to, you know, if, if you can accept that you've sort of achieved your legacy now, that's not giving up hope.
Speaker 3 00:32:03 That's just accepting that the legacy of what you're gonna do with your life has been pretty much achieved. And, and so, um, it's okay to not keep going at it. Um, but if you, you haven't thought about that, and you don't wanna think about it, then you have this desire just keep going, going, going, no matter what. Yeah. Itch in the back of your neck. Yeah, exactly. Yeah. I, I, I love, I love how you piece that together. Uh, and, and that's, and I, I'm, there's, we're insanely complicated creatures. It does amaze me to the what detail we can understand, you know, the, the hand and the arm and to the veins and the legs and the other things there. But our understanding of the brain, you know, and, and how that moves us for our understanding of the soul is still so, so far away from us.
Speaker 3 00:33:03 Um, and it clearly plays a role off of this. Well, Maya, I want to, we're gonna pause here for a moment to go into this next break. That is, um, an amazing set of those dynamics. Those doctors looking at failure, looking at risk, looking at the legal consequences and the responsibilities out there. Um, you know, there's that medical understanding, the treatment, the system, the payer model, the, all those things that sit within it. There's how you're approaching as you walk into the situation. There's how your family or your other loved ones or other stakeholders may play a role as they step into that. And their, their ability to be prepared to, to, to step into that and to say goodbye at that role. That's a lot of dynamics in here. When we, when we come back, let's, let's make a resolution here and let's work on some stuff. Let's, let's talk about putting a foot forward and, uh, and how family members can start preparing themself ahead of time. I remember you saying preparation takes effort. Um, so what, what are the efforts that we can go after, uh, to prepare ourself when we return with Michael Conley on the Journey's end here on the Parent Projects podcast? Stand by.
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Speaker 3 00:35:41 Welcome back. This week we've got Michael Connolly, author of The Journey's End, which truly is an investigation into death and dying here in modern America with a lot of great opportunities, uh, for us to make some improvements, and how, uh, we look at death, how we handle death, most importantly for our audience. How do we advocate for somebody who is taking those final steps? Michael, thanks again for joining us in the studio today, virtually. And this is, uh, it's a blessing to have you. Thanks for being here. It's a blessing to be here. So, brother, we, we've gone through these dynamics and it's, you know, it's almost, it's a mess. I mean, there, there's a lot of stuff that you're walking into, but it's real, uh, it's a real part of life. And there is, um, there's some real things that we can do and efforts that we can put into play that help us tackle that mess with a little more grace, a little more understanding, and probably a little more control.
Speaker 3 00:36:38 And I was hoping that we could really focus at some of those here for this, this last 15 minutes or so. Um, can you c let's, I think maybe one of the first things to start is you began this when I asked of how we prepared for death, you'd stated, and what does it mean to be alive? Uh, you've, you've talked about maybe some of this, this card game or some other things. What are some ideas of that? What do you, how do we tackle, what does it mean to, to be alive? What's the core tenets of that to you? So, I mean, uh, for me, it, it, it's, I'm helping others. I mean, I was put on earth to, you know, uh, serve others. And, you know, I don't wanna become a burden. Now, you, you can, you can help others as a burden.
Speaker 3 00:37:25 So I'm not just saying the, the definition of, of, but, um, you also don't wanna rob, uh, your children and their children of, of their lives by having to devote all of their time to you. And so that, you know, and, and so for me, I'm not, you know, uh, really anxious to stay around forever. I mean, for me, it's okay. I had a wonderful life, and it's okay. And, and they may, you know, they think I'm a little wacko when I say that stuff to 'em. But it, um, uh, you know, it, it, it, it is important to kind of figure that out in your own mind and, and get comfortable with what it is you want. Uh, yeah. One, uh, the, at the end, the, the last segment as we came through, we talked a bit about legacy. And, and I think that practically can serve a really good way to think through if you're having a hard time getting out of your own way and understanding it.
Speaker 3 00:38:35 And it happens <laugh>, right? Cause it's a really loud, messy world around us. Um, that might, may, that might be a way to get yourself outta your head. Think about that legacy and, and how you would want to be remembered. And, uh, I have a, I inkling in my, in, in my heart, my head here, just to say that that's probably a great way to start thinking about what your calling is. If you haven't grabbed your calling or your, your destiny or whatever you might be in life and how it is that you, you sort yourself and orient your si self in living. Um, thinking about how you're going to be remembered as to might be a great way to back your way in to have I accomplished what I was looking to do, or what is the purpose that I've gotta do there so that I know the day in which I can rest.
Speaker 3 00:39:18 So another little psychological tool to deal with that is, uh, you can talk about your, uh, professional resume. Yeah. And then you can talk about your eulogy resume, and are they different? Hmm. What, what do you wanna be remembered for as distinct from what did you accomplish? And, and, and that's just an interesting nuance. Yeah. Um, uh, to, to think about. But well, that's a, that, that's a practical, well, we've heard that before on the show as a practical recommendation when your loved one's having a hard time whom you're advocating for, right. To get them to start ideating where they need to move. Yeah. And, and so, I mean, the problem is a lot of people could never get out of their resume. You, you know, they, they just can't stop. Uh, and, and there is, when you age, um, uh, one guy put it, you need a reverse bucket list.
Speaker 3 00:40:21 You need to think about the things you no longer are gonna do. Hmm. And, and that's, uh, uh, I, I think that's another helpful idea because there's less and less you physically can do. And so accepting that, you know, uh, beginning to say, all right, you know, and again, this is that little dilemma with hope. You don't wanna stop trying. Yeah. On the other hand, you don't wanna try things that are unrealistic anymore. You know, like, I'm not gonna get up on a ladder anymore. I mean, I, I'd like to say I'm man enough to get up there and fix that. I'm, it's a bad idea to get on a ladder, <laugh>. It just is a very bad idea. And, and so, um, but I mean, in terms of practical things we can do, I, I wanna make sure we, we talk about advanced directives and, uh, advanced care planning.
Speaker 3 00:41:18 Those will sound like technical terms, but the advanced directive, um, is where the, a person has the opportunity to state in writing what they want at end of life. And, um, unfortunately, this whole process hasn't worked in our country. Uh, and it hasn't worked because it's, uh, it's developed as a checklist and it's developed as a legal document. Neither one of those are terribly helpful. What it should be is an educational activity. And, and it should be parked in a doctor's office. And it should be, uh, a routine conversation after, you know, whenever you're starting to become frail and the, um, uh, and you, there are a list of things that you, you really wanna be specific about. Like, on my advanced directives, they're, they're called a natural death. So I, I want a natural death. I don't want a mechanical death. I don't wanna die in I C U.
Speaker 3 00:42:32 And so now, um, it's fairly easy for me to declare that, you know, I don't want a feeding tube. I do not want a ventilator. I do not want a transplant. I mean, the, but unless you're specific, because the catchall checklist on most of these forms, um, is something, uh, called extraordinary care. Well, I got news for you. There's no definition of extraordinary care. And the third parties that are making these decisions will define it as, you know, <laugh> anything that might keep you alive. So it, it doesn't protect you from getting overtreated at the end. Uh, so go ahead. Well, I just, I was, I was gonna say, you know, um, the conversation though, as you were, as you started off, that the, the conversation of this should be educational. Yes. It should be a talk through all of that. Right? We've had this re I have this bug in my ear from our, our conversation with o Shill, uh, sometime ago.
Speaker 3 00:43:39 And an attorney who, you know, worked a lot of this stuff. And, and he cared for his family members as, as they, as they, for his dad, as as, um, uh, or his mom as, as she was passing. He's an attorney doing that as well. Right? Very well aware, especially, and that's his kind of area of law tax and, and then also estates and stuff. But, but he had to understand that death was inevitable and that eventually there would be some decision he would make that would not, could he have done something different in hindsight, maybe that's the decision he, he had in front of him, and he was gonna make those decisions. But he had had conversations enough to know things like, you know, doesn't necessarily wanna be resuscitated at one, you know, doesn't, doesn't wanna be resuscitated again and again and again to work off that.
Speaker 3 00:44:25 Right? But when it was just a matter of slip down in the shower and needed a quick, needed a resuscitation, you know, out of context, right? This wasn't a, in a hospital, it's, it, it's working off of all of this, was able to think, the wherewith had the wherewithal to think through, okay, well what's the application? What were we talking about? How did it come through? It's that actual educational perspective. It gave him peace of mind to know how to act and how to put that thing into play. Cause like you said, I mean, it's, they're pretty big terms in they're brand bland or broad terms. Excuse me. There's, there's, uh, you've, you've gotta be maybe specific there, or you make some other suggestions of even also having that conversation and recording it. Yes. Right. Seems like it would add some great context. I, I don't know about you, but I, I really struggle with email in highly emotional situations.
Speaker 3 00:45:18 It's, it's, it frustrates me to see emails go back and forth, um, and in writing and even letters even to that nature. Um, I prefer to see the facial expression and the, the way that somebody intends to do something. Is that, is that kind of where that can, can that play a role when you're doing this? It, it is. And, and so there are two documents that end up being developed. One is the advanced care directive, which is where you try to specify what you want or don't want. Okay. The other document is the healthcare power of attorney. And that's the person that you designate to make your choices. Now that person is supposed to be guided by your direction. Um, but, um, you know, if you've never had a conversation with them about what you want, which is what happens, and, you know, you think of, you know, yeah.
Speaker 3 00:46:10 And, and, uh, and so, uh, neither one of those becomes too helpful. Uh, and, and then furthermore, if another family member disagrees with the one that has the healthcare of attorney, oh, the, the doctor's like, well, I'm not gonna, I'm not sure that'll protect me. So no, we're, we're just gonna, and, and so the video is a little more powerful. It is. And it's a li and it, it sort of helps deal with the ABT family member that is not going along. Yeah. And, and, and so that's just another, there are, there are also videos out there about different end of life treatments. And that's a very powerful way to, uh, educate people. So, you know, I mean, if you're dying, uh, I mean the, the leading causes are, you know, heart failure, cancer, um, respiratory, or C O P D. I mean, you can learn about these things and the stages that you're gonna go through.
Speaker 3 00:47:12 Yeah. And your doctors aren't gonna talk to you about this stuff. One of the other problems we haven't talked about is fragmented care. And, and, uh, what that comes from is that one of the great gifts of medicine is all of our specialization, all that specialization, however, has caused the specialists to just look at you with whatever they're working on. Yeah. And, and so they're, they're coming at this, all right, I can conquer cancer. Well, all the side effects of cancer, that, that isn't what they think about. Or if it's heart failure, it's, how do I just keep your heart pumping? Well, you may have a lot of other things going south, and, and these people don't talk to one another cuz frankly, they're not paid to talk to one another. And, and so, and you don't have any general person to talk to, which is what palliative care could be about.
Speaker 3 00:48:10 How do I weigh all these different options and how do I, uh, balance these different, uh, points of view? Um, and, and, and so things just slip by and, uh, and you end up in a, nobody knows what's going on situation. Uh, and it very frustrating for a family. Well, you know, the first step is knowing that you kind of expect this, this is how, this is how we design the system. And, and so, you know, if you're gonna be the navigator, you, you may have to kind of force the doctors to talk to one another or get, you know, um, yeah. Uh, different, you know, like my, my sister's primary care doctor had one approach to treating, uh, C O P D, but the pulmonologist had a different approach. And she's like, but they don't talk to each other. So there was no reconciliation.
Speaker 3 00:49:03 Who does she agree with? You know? And, and that is the kind of dilemma that, that, that people end up with. Well, and those are, you know, we, we had a similar thing just in caring for one of my kiddos. I had a lot of conflicting, different people wanted to treat different things and multiple, you know, fragmented care. And so I made an appointment and I had them all on the call, and I, I brought 'em all into the room to work through that conversation. I had him, we pulled out, well, maybe he shouldn't be on this one medication that one had given, because this one over here kind of created a conflict. Wasn't a huge red flag enough to get to have been hit before, but in the context of how it was being used, led to someone thinking, well, maybe we could use this other thing and have no risk of complication against this if we just shift this different direction.
Speaker 3 00:49:47 And that perspective really does a lot. You know, one person I'll put out to families, if you're, if your family's struggling with that, if you're really fragmented, the use of a healthcare, um, advocates, um, of somebody who understands the healthcare system in general, who understands the payers model system, by the way. Right. They know the ICD 10 codes. They know how that comes together and what's likely to follow or what to see they do. They can do a great job of helping your family hold that stuff together. Um, of painting that broad brush of understanding and coaching you ahead of time and what conversation to have with one particular specialist when you get that six and a half minutes with them. Uh, or even to help you find some of those doctor's offices, which we're seeing pop up now all over the place that are committing themselves to geriatric family medicine in a more holistic level where they're, and I don't mean holistic just of naturopathy, but just looking at the whole big picture.
Speaker 3 00:50:44 Correct. Giving more than six and a half minutes of being a whole office dedicated to use video teleconferencing and, you know, that are, that, are they, they can get 15, 20 minutes with the patient in order to really settle in and to understand the full perspective. So, um, I think that would be a great place to even challenge, make sure if you've got that, that power of attorney or that advanced directive too, great opportunity to, to ask, you know, if you're headed down one of these paths, is there something we're not thinking about? Should we have a discussion? Would we, in your experience, would we face some particular medical? Are we headed down some medical conversation that we might have to have our decision we have to make that we can talk about now? Um, those, this would be great aspects of that. I, I love you getting us thinking about those conversations upfront, documenting those conversations upfront.
Speaker 3 00:51:33 Right. Um, of how that comes through. Yeah. Um, how about understanding palliative care? What's your recommendation? How, uh, how does a family or an advocate, what's, what's a good way to start getting your feet wet and understanding what palliative care is? Because it's probably not, it, it highly likely something that's not gonna be presented to you upfront. Um, so, um, palliative care is, uh, intended to be a team of individuals led by a physician. And that team of individuals would be social worker, pastoral care, um, uh, a nurse and, and them taking a holistic view of your situation. And then each of them has an expertise on how to access, uh, whichever thing needs to be most important. Um, and anybody that's got a major chronic illness, a consultation with a palliative care team would be highly desirable now getting one or finding one. Uh, and so step one might be to research whether they exist in your community.
Speaker 3 00:52:42 Yeah. Um, and then that might help create some pressure to, to, to make them available. Um, the, uh, let me jump to hospice a little bit because hospice, uh, is really built off a palliative care model, but hospice has three problems with it, which make it, uh, having a massive marketing problem. So the first problem is that your doctor needs to declare you're gonna die in six months. So you can't get into hospice without that declaration. I have news for you, but no doctor wants to declare you're gonna die in six months. So the doctor is not gonna mention the idea of hospice because it sort of implies he's willing to say that now you can call a hospice directly and they will provide a doctor, which will do that. So there's a way over that. The second problem is that when you go on hospice, you give up your regular Medicare insurance, and that's like, wait a minute.
Speaker 3 00:53:52 You know it, I, now I'm officially giving up hope and I I still might wanna try something. Well, it turns out if they let you do both, it would work out wonderfully for everybody, but they don't. Yeah. Yeah. And, and, um, and so that's the, the second problem. Now you are free to jump back, uh, meaning you can go back to Medicare and get out of hospice anytime you want, but it's complicated. That's a, it's a complicated, you know, it's a complicated process to come off hospice, go back into the system, even to get an ambulance ride, to work through all of that, the declarations, what has to be waived to come back into it. Yeah. But, but I, I think that, and then the third problem is that hospice doesn't have a very strong home care benefit. Yeah. And the home care benefit for hospice, uh, should grow significantly.
Speaker 3 00:54:46 But there was a study that just came out that I think is powerful. It said that people in hospice save Medicare 3.2 billion annually. Hmm. Yet Medicare is not. Uh, and, and if they just let loose of all those requirements, if they just said, no six months, if, if you have a terminal illness, you're eligible, period. You know, if, uh, there, there's no reason why you couldn't get. What happens with people that have cur to cure is that they, they love the palliative care so much more that they stop getting the curative care. They abandon it, but they choose when and how to abandon it. Yeah. Right? And so if, if you, and these aren't major complicated changes that our Congress couldn't just do, but that's one of my big, uh, points in the book. Yeah. Well, those are, look, that's part of the mind shift, and that is this, this, this, um, out thinking outside of the box is our focus over the course of the month of May is we really start thinking about what needs to happen.
Speaker 3 00:55:55 How do we look? There's a lot that comes at us that we don't have a lot of control over. We just have to kind of absorb it and then work our way through it as best as possible. But this is one look in, in this target market, in this age group, this baby boomer group who is stepping up and still taking care of their parents, you know, in their mid seventies and under their eighties. You have incredible by power and you have incredible opportunities at this point in time to reach out and to make and effect some levels of change so that things are in a better position for you as you get there. And also for your loved one. Um, you know, reaching out, being, you know, reach out to your lawmakers and, and talk with them about the importance of palliative care and that you, you wanna see palliative care and you wanna see improvements in how dignity is carried through life, the entire span.
Speaker 3 00:56:42 Right. All, all the way through to a natural, to that natural death. And that, that's, that's an important thing for you. This is a, this is a time to probably make yourself little thing you can do on the side to send that off, just to start that voice and to get those things going, because there's such a large amount of you dealing with this right now. Right. There's such, one of the things you could do to get access to palliative care care quickly is, um, seek a hospice consult. Yeah. Okay. And, and so that's what I did with my sister. Uh, my sister wasn't ready to go into hospice psychologically, but I called it palliative care. And then when the people from hospice showed up, she was so, like, felt so comfortable with that nurse Yeah. That and, and then she qualified. Yeah. And, and all of a sudden, you know, a whole burden of, of fear was released.
Speaker 3 00:57:40 And, and then you, then you emphasize that you're likely to live longer in hospice than you are in active treatment. Exactly. It's sort of like a no lose proposition, just jump to hospice, but nobody's gonna offer that to you. And that's sort of, that's that. And, and so, but you can literally call the number directly and they'll send somebody out. Yeah. That is a, that's a great practical advice too for you if you, you sense that that's where your family's moving close to that end of life, uh, highly valuable for you. Well, Michael, th that's just, just, it's a wealth of information. We talked about those dynamics, again, from the doctors to the way the medicine's set up to the way it's, it's tested, the, uh, the, the incentives, the impact of the payer systems against things, those challenges of ourselves in our own way and what we deal with, um, as advocates just in our own life.
Speaker 3 00:58:36 Uh, and then, you know, we, we started broken down on the backside of it. We gave some really, some, some great valuable opportunities in how you start leaning forward, understanding what does it mean to be alive, facing death in yourself. Right? You some things like these card games, which by the way, I'd, I'll get from you and I'd like to put down in our show notes down below off, you know, after the show. Right. Uh, we'll put that down there so that if you're interested in getting to those things, um, also look at, check out parent projects.com. We've got examples of, of these key documents that sit out there, find, um, you know, that we, we don't give legal advice, uh, you, but you should. And you should always try to find that person who's licensed in your particular area. We know our, uh, our viewers come from all over the country.
Speaker 3 00:59:21 So check in, check in. You're going to find, uh, a family or an estate law attorney. You're gonna find somebody who can work with those. A lot of doctor's offices as well can give you, uh, in the medical community that you work with, can give you some help on those advanced directives. If faith plays a role in your loved one's life today, I highly suggest that you reach out to their parish or to their church, and you ask if they have documents and guidance. That's in line with what those beliefs are for them is particularly around the advanced directive. A lot of them have those documents and they have the templates, and that can guide your conversations. And that's probably one of the biggest takeaways I took from you, Michael, was having a conversation early and often, early and often breaking it down, getting to as much detail as possible.
Speaker 3 01:00:09 And if it doesn't fit into a piece of paper, just turn on a cell phone, get a good recording, and to understand the, what their wishes are and revisit it. Because Lord knows, you know, I'm, I have not achieved my purpose yet. And so my advanced directive's gonna be one level. But once I've achieved that and that's come across, I know that's going to change and I might not remember to go back and update that advanced directive. So I would hope that my kids are watching this and they will come back and remind me to come back at it. But, uh, anything in there that I missed? Sir? No, you've done a wonderful job summarizing the, the key issues. Well, I think you did a wonderful job guiding that conversation. I do. I just, I wanna highlight you again and the Journey's in is the book that you guys have out there today in the investigate investigation of Death and Dying in Modern American.
Speaker 3 01:00:57 It's, it's, uh, um, Roman and Littlefield is the publisher for it. Where can we find this book? Amazon. It's, you know, e everybody gets books on Amazon. Wonderful. So you can, you can find 'em down on Amazon if they, uh, I think we just also had a, a website up there. Any other place if, if people wanna get ahold of you or a way that they can ask more or with, um, I, I'm, I would gladly help anybody that wants to discuss this if my email is up there. Uh, and if you want to email me and you want me to come talk to a group, or you want to just talk to me one-on-one, I'd be glad to help. Michael, you've been a blessing for us. It's, uh, it's been awesome. Thank you for sharing your time, talents, and treasures with us and our listeners today. It's been a privilege.
Speaker 9 01:01:46 Well, that's it, foots team this week, and thanks for joining us. If you've enjoyed the content, remember to subscribe and to share this episode on the app that you're using right now. Your reviews and your comments, they really help us expand our reach as well as our perspective. So if you have time, also drop us a note. Let us know how we're doing for tips and tools to clarify your parent project, simplify communication with your stakeholders and verify the professionals that you choose. You can find us on YouTube, follow us on Instagram and Facebook. Thanks again for trusting us. Until our next episode, behold and be held.
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