 This is Think Tech Hawaii. Community matters here. I'm Marcia Joyner and we are navigating the journey. Navigating the journey is dedicated to exploring the options and choices for the end of life care and to assist people to talk about their wishes. It's time to transform our culture so we shift from not talking about dying to talking about it. It's time to share the way we want to live at the end of our lives and it's time to communicate about the kind of care we want or don't want. We believe that the place for this to begin is not in the intensive care unit, but together as we explore the various paths to life's ending, together we can make these difficult conversations easier. Together we can make sure that our own wishes and those of our loved ones are expressed and respected. If you're ready to join us, we ask, navigate the journey. And today we have a very special person with us, Joe Merchant, whose organization, believe it or not, is navigating the journey. It's the perfect person to have today who has spent a lifetime with people navigating the journey. So, welcome, Joel. Thank you very much. It's a delight to be with you. Tell us about Joel and how in the world did you get into navigating the journey down this path? Tell me about Joel. It's too big. Okay. We'll start wherever you want to start. I've been here 52 years. I've been in education and I've been in business. And following business, I developed my own consulting practice, which morphed into working with end-of-life issues. I think the reason, at least that I did that, is because death was present in my life. I think some people overlook that when it is. They try. They try, but I couldn't overlook it. And it appeared to me when I was 10, and it has appeared regularly since then. And it just stayed there until the time came when I could do something about it. One of those issues was having had a son born with birth effects here, who was Marchadom's poster child. And I helped develop the spina bifida association of Hawaii. It was very active with organizations that advocated for people with disabilities. During that time, we had 46 members, and among them some of their children died. The time my son spent in the hospital in the pediatric ward that I spent with him, I noticed that it doesn't matter whether it's a pediatric ward or not. Even there, people die. Ah, so I tucked that away. Between the time I started working professionally and about 10 years ago, I'd say, but who's counting? 25, 30 friends of mine who have died, all prematurely defined as they were younger than me at the time. They are with me. And about 8 to 10 years ago, I began working with end-of-life issues. One way in which I do that is that every semester, Tony Lenzer, a retired professor at the University of Hawaii and I, put on a facilitated course in end-of-life issues for the Osher Life-Long Learning Institute at the University. I also facilitated a course at Kaupelani Community College. The point of those courses is that it gathers a group of people, we limit it to 10 to 15, who don't know each other, who come in very hesitant. And typically, not virtually everyone, but many of them say, I don't want to talk about this, but I know I need to, and so I'm here. That's an important factor. During we have seven or eight sessions with weekly or biweekly, the group decides with this group. And it's extraordinary to see them bond. Much the same thing happened when I worked with organizations that represented people with disabilities. People who would have nothing else in common would gather to talk about, once a month, would gather to talk about their child and their child's disability. And they'd start very cautious and hesitant because they didn't know each other. And as they do that, they realize they're talking about a very intimate topic. In this instance, we're talking about the end of life. And when they come together, the first conversation we have with them is, tell me about a death in your life, because they all have one. And they all have that story. They haven't thought about the story necessarily, and they haven't thought about telling the story. But by the end of just the first session, they realize they're bonded because they have something in common in a very intimate. As a result of the groups I facilitate, it's been an interesting experience. After we're done, periodically someone who happened to be in the group will call. And I think the reason they call is there's some issue related to end of life for them. And they look around for people with whom to have that conversation. And people back away from that conversation. They do. And they know I don't. And so they call me. And they describe the end of life issue in their lives that they're facing. And I work with them individually, quite a few. How do you, so many people, have fear of dying? Even the word death is one of those that is listed as one of the no-nos that you don't say because people have these strange fears. So how do you get a person, okay, so we know there's a fear. How do you get a person past the fear of talking about it? About internally saying, well, yes, this is real. And there's nothing to be afraid of. How do you get them to that point? As a facilitator, I'm with a group of 10 to 15 people and I've asked them to talk about a story about a death in their life. They may not want to, but that's the beginning. What they discover is talking about it makes it feel better. Talking about it, they often tell me makes them less afraid. It's as simple as that. That's essentially what happens. They get over the first hesitation, which is talking about death doesn't mean I'm going to die. I'm going to die anyway. But perhaps I'll experiment. I'll show up in this course. I'll walk in and say, I don't want to talk about this, but I know I have to. For whatever reason they think they know they have to, they start to talk about it. They start to talk about it from their own experience. They discover that others have had similar experiences. They don't feel isolated. And that isolation is part of what's behind the, I'm afraid to talk about this, and so maybe I'll just ignore it. What is it that people fear of dying themselves? What is that about? Is it just the unknown? For me, of course, because of my sense of adventure, I'm sure there's something else out there. I like that a lot. I kind of looked for that. But so many people are afraid for themselves, not just talking about it, but what happens to me, the Christian church has spent forever teaching about heaven and hell, and people are scared and all of that. How do we get past that? How do you get people to let go of all of those years of pounding it into them, the devil and hell and all of that stuff? How do you get past that? They may not get past that, but what helps is the conversation. They realize by having the conversation that they're having it at an appropriate time. The time for conversation is not when a person comes to the ICU or the ER and may be not able to talk. And we play scenarios. And one scenario is a member of the family appears desperately ill, no longer able to make medical decisions for herself in the ICU, in the ER. The family gathers. The first discovery is, I don't know what she'd want to do. We never talked about it. The second issue, and so now it's up to them to talk about it, the second issue as they begin to talk about it is they disagree. Of course. Oh my, do they disagree? When you lay that out as a scenario, and you say, look, there are lots of different possibilities for how you might come to the end of your life. We can cover a lot of scenarios, and in that scenario, we could say, what would you do if? And for you, it may be a different scenario that plays out, but you'll have practice doing scenarios. You have opportunities to say, these are the wishes I'd make. You have an opportunity well ahead of time to have the conversation, like Ellen Goodman's Conversation Project. It is wonderful. Backs it way up. That's the important part. And let it become part of the conversation, a daily conversation. I don't know if that answered the question, but that's my experience with people who, they'll say having these discussions has made me less afraid, but that doesn't mean they've necessarily given up the fear. When we talk about fear, and it seems to me, when I hear people say, oh, what am I going to do without you? And then it becomes more about me than about your passing. If you pass, what happens to me? And you hear people all the time, oh, I love you so much. What am I going to do without you? And it's about me. So how do we do it? I'll tell you what. Think about that. Think about that. We're going to take a break. And when we come back, we'll see if we can figure that one out. Okay. We'll be right back. This is Think Tech Hawaii, Raising Public Awareness. You can be the greatest. You can be the best. You can be the king, conveyin' all your chess. You can be... My name is Mark Shklav. I'm the host of Think Tech Hawaii's Law Across the Sea. Law Across the Sea comes on every other Monday at 11 a.m. Please join us. I like to bring in guests that talk about all types of things that come across the sea to Hawaii. Not just law. Love, people, ideas, history. Please join us for Law Across the Sea. Aloha. I'm Marcia, and we are having a marvelous discussion with Joel Merchant, who has an organization called Navigating the Journey. So of course we want him with us today. Of course we do, to see how other people navigate the journey. And I had asked Joel about this. I think it's the elephant in the room. The part of it that we don't talk about is I love you. You've been a part of my life. What am I going to do without you when you pass? So how do we deal with that one? Because that's really the biggie. What am I going to do? You're right. It is... We are of the nature to say it's all about me. We're not to realize it's all about me. And I think that having the conversation assists in that. A lot of the people who call after they've been through the course I facilitate say please come over because they're facing exactly that. One of them has been declared terminally ill. They're both struggling with that. They're both looking for some magic medical event that will extend life. And one of them will say I may even be a life counselor but I don't know what I'm going to do. I think it's not different except it's so irreversible. It may not be different from the fact that we respond to change the same way. We're not sure of it because we don't know what's on the other end. But I think that in the conversation people have a chance to listen to somebody else say that and say oh, I didn't realize that. I think that is a lot of help for them. To hear it, really hear it and to recognize this is about me. I'm not a terrain psychotherapist. No, of course. But I can engage in the conversation. I know the questions to ask. I don't have any of the answers. They might think they're looking to me for answers but they're the only ones who have the answers. I'm there to listen to them figure out what the answers are. Now when a person is in hospice or let's deal with hospice simply because that's where I have an experience with my mother in my house in hospice which was a wonderful experience. I'm not selling hospice. I guess I am selling hospice. But for me I am so glad to have had that opportunity to be with her. Yes, yes. I made, as you may suspect, I make a big deal out of everything. So I made a big deal out of she was with me when I took my first breath and I need to be with her when she takes her last. So I had crawled into bed that day and sure enough I was with her when she took her last. It was marvelous. It wasn't scary. It wasn't all of these things I had made up in my mind, you know. It was wonderful. And so my daughter is an RN hospice nurse and she said sitting right where you are that it is such an honor to be with the person at that moment. Yes. And when we look at it from that point of view then it's not scary. But when you look in the hospital and the person is lined up with all these tubes and that is so undignified and then someone has to pull the plug and all of that, it just takes all of the wonder out of it. That's what's scary. It's those moments, that place, to me. Yes. The fear might be exactly a matter of this might happen out of my control. Yes. And that happens often. There was a study recently at the University of California Medical Center that said only 23% of terminally ill cancer patients were referred to hospice by the medical staff before they died. We're not doing as good a job at hospice as we can. Medicare covers hospice for six months. Right. The average amount of time people spend in hospice is 27 days. We're not being certified. We're not facing it early enough. Well, and of course at $10,000 a day in the hospital, at least that's what the average is, $10,000 a day, to be hooked up to all this stuff with people you don't know and very impersonal, you're not going to get well, they're not going to cure the cancer, but they are making money. The hospital is making a lot of money. So if they refer the person to hospice early so the person can be with their families and it's a smooth transition, then how much money? Because we're paying for that $10,000 a day. In Hawaii, there are 330,000 people on Medicaid. That means we pay for that. But the hospitals are making a killing on that $10,000 a day where if they referred them to hospice where they could be comfortable with their families, with their loved ones, some of that fear is gone for everybody on both sides. Yes. And when you see somebody in the hospital that you describe, tubed, it's likely because they haven't had the conversation ahead of time. Right. They haven't chosen medical power of attorney to make decisions when they cannot and they're going to stay there. And I don't think... I'm not sure the hospital is... Yes, it's making money, but there's plenty of stuff the hospitals can make money on. Now, I don't know. I've never been a doctor. However, I think doctors are trained to cure, to help. And so if they give up early, is that part of their psyche that I can't give up on this patient? If I send it to hospice, I have given up. I believe that the reason the average number of... the average time we spend in hospice is 26 days despite being eligible and we could be certified for six months has to do with the fact that doctors... nothing against doctors. I have ten of them because of my own chronic medical condition. But they're trained. They're trained well. They're trained to fix things. Right. And when I appear, they want to fix things. Fix something. Yes. And every once in a while, they get somebody who says, No, thank you. And I've been with a person and a doctor in that situation with a doctor. He said, Do you understand what you're saying? I'm so... this is the road I go down. Right. It wasn't until 20 years ago that palliative care was introduced in the medical curriculum. That doesn't mean nobody died without being in pain prior to 20 years ago. There are very few palliative care specialists or geriatricians. And so we focused on fixing and making better when the real conversation, which I have often with people, is here's the difference between curative care and palliative care or comfort care. And you reach the point where it's important to make the decision before you become in the hospital with tubes. And they're not aware of that. It's not until that conversation which sort of charges them to think about the difference between the types of care and say it's time for comfort care. What do we have to do to have the doctor feel okay, I can let go? That he can, the doctor, he or she, doesn't, this person is not going to get well, this person is not going to be fixed. What do we have to do to get the doctor to let go? Because he's trained to fix. What do we have to do? How do we train them to let go? You and I earlier agreed that the conversation project was very important. Yes. It's important not just for us, it's important for doctors. In their humanness, they've got to go through the same conversation. They've got to go through the same groups. They've got to talk about death in their life. And I think slowly it's coming around. We are running out of time and I can talk to you forever. So please know that we'll have you come back. But before we do, you have been working on this bill to pass medical aid and dying for what, 20 years now? For as long as we've been trying. Yes. And it comes up regularly. Last early part of this session, the 2017, it got within, what, three votes. The Senate passed it. And then the House deferred. Yes. Well, we're back. And it looks like it's going to pass this time. However, in a Civil Beat editorial, and I'm going to read just part of it, but terminally it'll have a fundamental right to end their suffering. It's time for the legislature to do the bidding of the vast majority of Hawaii voters and legalize medical aid and dying. Now, of course, I can't read the whole thing because we're just about out of time. But do, from our audience, do read Civil Beat editorial today. Yes. And the hearing will be sometime this week. Go to Hawaii Legislature and online and do vote. Do cast your term... Cast your... Call your legislator. Do whatever you have to do to make sure it's time to make sure that this happens. Okay? Thank you, Joel. You're welcome. Thank you so much. Please come back. I'm delighted to be with you. Aloha. Thank you.