 I'm Marcia Joyner, and I'm your host for 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 that 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 and don't want for ourselves. We believe that the place for this to begin is not in the intensive care unit. Together we can explore the various paths to life's endings. Together we can make those 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, we ask you, navigate the journey. So together we can explore the options, choices, legislation, and all of the other things that go along with it. Today's guest is Dr. Jackie Young, a lifelong advocate for social issues. Dr. Young is a consultant, a speaker, a lifelong learner, a volunteer, and activist for social change and healthy communities. Dr. Young, Jackie, welcome, welcome, I'm so glad you're here. So tell us all about Jackie. I've known you for, I don't know how long, and I've watched you go through all of these various changes and ups and downs, but since we're talking about end of life choices, and obviously you're not at the end of life, but you did go through some horring things with cancer. And I think that in this case where we're talking about that kind of thing, take us through the steps of cancer and what you've been through. Sure. Well, first of all, I am just in the process of completing my memoirs, and actually it's about this topic. My memoir is about what the Gypsy said is the name of it so far, and it's about the gift of aging. Because when we talk about being alive, we talk about aging and with every day. And as a result of what I heard way back when I was 15 years old, that I was going to die when I was 25. That has been in my mind that mortality is very fragile, and that there's a possibility that we could die at any moment, any time. Now that gets a little bit morbid and hard to put your hands around, but there is that not slogan, but I remember reading a book by Alan Lakin about if you had six months to live, what would you do? That's where my friend John Ratcliffe comes in, because he is suffering from cancer, and he is in a terminal stage of it. And many of us don't get that definitive statement, you're going to die in six months, but I have lived since I was 25 years old and I didn't die, I have lived that thought that I may die. And that has actually made me focus more on what it is I want to do when I'm alive, because I never knew if I would be alive the next year. So my family, if they're watching, are very familiar that I do talk about dying, unlike many people. I talk about dying because I talk about living. I talk about how I want to live my life. And so yes, as I barreled on in my life, one of my most life-changing moments was I was working for the Marriage Equality Bill back in 1998. We had a constitutional amendment that was going to be very damaging to our constitution, and I was asked by ACLU if I would step in and had a committee to organize to stop this amendment. And so I did. And just around that time, I was diagnosed with breast cancer. So I thought to myself, oh, if I were to have breast cancer and die within six months, how would I spend the rest of that time? And I made a decision then I would work on the campaign. And if that was going to be my end of my life, I was going to do that. And since then, I have really stuck my neck out with that motto in my mind that, OK, if I had six months to live, what would I do? And it's just like I really admire John Radcliffe. I've told him, I've written to him, and I said, if I had six months to live, I'd be right beside you there and advocating for this bill that's in the legislature right now. Well, he has been our guest a couple of times. Yeah. It was marvelous. It was just remarkable. I've worked with John, and I admire his focus on this because he's giving so much of himself. So yes, I've had cancer. I was head of the American Cancer Society in Hawaii, as you know, for many years. And I have lived and worked in a group of people and families and volunteers who've suffered from their loved ones dying from cancer at a very early age. Some of them born and within a few months dying. Some of them born and within a few years dying. So children, you know, with cancer, adults with cancer. So the issue of dying has been very not only as part of my life personally, but professionally. That's been something I don't hesitate to talk about. And so, especially for people with cancer, there are so many cures now. There is some, I mean, I'm still alive. I had breast cancer in 1998, and here I am. Two years ago, I happened to be in the hospital for some other examination, and they, unsuspectingly, and found another cancer on my kidney. And it was just incidentally found. As they were doing a scan of my upper chest, they got the top of my kidney and saw there was a cancer the size of 11 on my left kidney. And so, fortunately, because this is not usually detected early, I had that removed. So again, I thought, here's another life-threatening issue. If I had not caught that cancer early, if another five years had gone by, I would be in a terminal illness. I would be experiencing symptoms that would show that I really had a serious cancer issue, and it would be terminal. As it is, they removed it, and I'm fine, and I'm back out, you know, doing my work. So yes, I've had some experiences. My professional life with the Cancer Society has shown me that life is very fragile, and that you need to value it by navigating the journey. I love your title, by navigating the journey, and by making the most of your life every day. And thank you for giving us that background. Well, I've had, as you know, I've had cancer repeatedly. And I was told also that at the time I was born, you know, 19, I was born in 1938, and- I'm older than you. Everybody said, oh, 45 was it. At the turn of the century, 45, nobody lived past 45. And so I kept thinking, oh, but I passed, well, I get past 45 with this repeated cancer. And 45 came and went, and as we see it, and we still go through the repeated cancers, but never like John. Never at that stage where you say that it's terminal. Well, never like John who was speaking out about it. There are many people who go through some terrible cancers, and they've been very vocal. Pennetbacker is one, you know, he's a television producer. He has been very forthright in talking about his cancer and how he went and got clinical trials and as a result saved himself from the terminal illness that he had. And there are still trials out there that you can participate in, but you're obviously somebody who values your life. And that's what life is about, valuing every day that you have. And that sometimes sounds a little corny, you know, valuing every day, but it's really valuing the time that you have. You know, there's a wonderful saying by Joseph Campbell that people seem to seek the meaning in life, but he believes that life is about the experience of being alive. And the experience of being alive is experience of aging, and that's what my book is about, that I didn't think I was going to age. I didn't think I was going to live much beyond 25. And so every year that I went by, wow, I'm still alive, you know, what do I do now? And so that really made me focus and decide if I'm going to make myself worthwhile, I'd better get an education, I'd better do this, I'd better do that. And I think you've done the same thing, because I know you're right in the middle of it, Marcia. And I say I'm older than you by four years, you know, and as a result, 1934, as a result I watched Pearl Harbor being bombed. And that was one of the life-changing moments in my life, you know, when you saw something put on you like that, that, you know, World War II, watching Pearl Harbor, I lived up next to the tea house up in Olive Heights, and it was the place where the only spine Hawaii was, he would frequent the tea house. They didn't know that, but he would frequent the tea house and look through a telescope that was up on the top floor and look at the harbor. I lived right next door to it. So that created a huge effect on my life. So my book, My Life Story, is about life-changing moments, about things that made me wake up. Every time I sort of woke up and looked around me and said I'd better do something, I'd better do something. You know, it wasn't like they happened every day or every year, but it happened frequently enough in my life that I am where I am now, where I feel like I can look back and say, okay, I think I contributed, you know, I did something with my life. So that to me was important. Well, for me, as our audience knows, everybody that I've had on this show is a dear friend. And I am so grateful. And then that's one of the beauties of living in Hawaii is all the wonderful people that you get to know, different ethnic, different religions, different languages. And that just makes life so rewarding in itself, just knowing these people, having a conversation with them. And everybody we've had on the show has been really different, really interesting and totally willing to navigate the journey, totally willing to talk about those issues just like you have about looking at today and how the different cultures handle the end of life. And some do better than others, of course, always. So that's, for me, that's what makes every day special. Well, I'll tell you a funny story. You know, I was raised by my grandparents, and my grandparents also planned for the end of their life. And when I was about 15, I went to the mortuary with my grandfather, my brother and I. He went to pick out a casket, and he wanted to pick the casket he wanted. He didn't want it to be too fancy. And he was at that time in his 60s. And he lay down in the casket, tried it out in front of him. He was Korean, lay down in the casket, tried it out. And he decided that's the one he wanted. He had his tombstone engraved, except for the date of death. But everything was in there exactly the way he wanted. It was all carved in cement with his picture and my grandmother's picture, all except the missing date. And when he died, I was in Germany at that time, but unfortunately the community felt that he needed a better casket. And they insisted that he be buried in a mahogany casket, which at that time cost about $5,000. Wow. $5,000 in those days. You could buy a car. Yes. You could put a down payment on a house and pretty much own the house. So his wishes were overturned by the people around him who put pressure on my family that he needed this great, huge funeral, which he didn't want. He really wanted this modest casket that he tried out and he really wanted, he had it all planned out. So yes, there are things that you could put down what you want and then there could be people overturn that. So what I did bring with me is... One of those things that we, and that's part of what we talk about, is having that conversation and putting it in writing so that you're so-and-so from California doesn't come in and say, ah, nope, yes. So when my parents died 20 years ago, we were passing a law at that time. I think thanks to Jim Sean, if I remember correctly, where you could have your surrogates say pull the plug and this is it. So there weren't many papers at that time. There were some papers you could fill out that say this is what you wanted. But when I was in the hospital two years ago with my kidney operation, I was given this green, bright green, so you could put it up on your... Turn it. We can't use... Bright green. No, the green shows up black. The green shows up black. Well, sorry. So we have to turn it. Yeah. Okay. Well, anyway, it's a bright green document that you can put on your refrigerator that when the emergency people come, they can see it and they can see what your wishes are. So in this little packet I have there my provider orders for life-sustaining treatment is POSST. And inside this is the doctor's latest description of my various illnesses that I have, congestive heart failure, cancer, blah, blah, blah, blah. And the other side is emergency contacts. So I have that available in my home and my kids know about it in the event that I have a sudden life-threatening illness, which has happened because my brother also, all of a sudden, had a stroke when he was taking a shower. He was living with me. And after he told me the pills are in the medicine cabinet, the fire event came, that was it. He never spoke again. And five days later, he was dead. Well, we have to take a break and we will be right back and then you can tell us more about the packet. Okay. You're watching Think Tech Hawaii, exploring the world we live in, recognizing the changes around us and looking into the future of our lives together in these islands. Great content for Hawaii from Think Tech. Hawaii is a place where you get to watch shrinks and others involved in psychology talk about the joy, the sorrow, the pain and the bliss of being human. I am Steve Katz and I am a practicing marriage and family therapist here in Honolulu. My guests are psychologists, clinical social workers and others who are interested in helping people be fully alive. Please join us into this most human journey in consciousness and loving kindness. Hi. This is Jane Sugimura. I'm the co-host for Condo Insider. And we're on Think Tech Hawaii every Thursday at three o'clock. And we're here to talk about condominium living and issues that affect condominium residents and owners. And I hope you'll join us every week on Thursday. Aloha. Two. Okay. And with my dear friend, Dr. Jackie Young. And you were telling us about your brother having a stroke at such an early age. Well, he was actually 79 at the time he had a stroke, but he was in the shower. It was late at night and he was living with me and I heard this thump and then he came outside and he was staggering. And I put him in a chair and he said, my medicine is in the cabinet. I dialed 911 and when they came, they said he had an aneurysm that had burst. So I never heard him speak again after that and this is what I did from my brother. My brother was an avid iPhone user and he was always connected to what was going on in the world and he was just very active. And when he was in the hospital in a coma and the neurologist said he's had several seizures and his brain is deteriorated, but we can pull him through if we go ahead and operate him. And I said, but what will be his life be like? And he said, well, he'll be incontinent. He won't be able to talk. And I put an iPhone in his hand and I said, will he be able to use an iPhone? Will he be able to use an iPad? And she said no. This is a neurologist. And I said, I don't think he wants to live. I don't think because he was so active in the world. That helped to make the decision when it was end of life that he was on life-sustaining breathing apparatus and whatnot. So it helped the family to know that he could never go back to being the same again. And he was a well-known photojournalist. He was a well-known surf photographer. He had a very active, engaging life. And so it was a decision you have to make in the quality of your life. And he would not have had any quality in his life. Of course. So that is exactly where we are with navigating the journey. We need the family to talk about it early. We need the family to be on board with all of it. Even if your family lives in North Carolina, you can Skype them in. But we need to talk about it before it gets to the stage of a stroke. Before those things happen. And like you said, with this packet of information, we need it to be written. We need a copy to everybody in the family. Everybody can talk. Now, in my family, of course, needless to say, we talk all the time. And I told everybody, well, when the time comes, just don't spend any money on any real estate for me. Just push me over the rail and into the drink. Just push me into the water. Of course, there are laws against that. Well, that's what somebody told me. He said, no, I said, I'm biodegradable. There are laws about that. We can't do that. I said, I'm biodegradable. She said, no, but you're toxic. You'll poison the fish. So that didn't work. So we have to go back to something modest and normal within the rules of decency, I guess, is what you call it. But you know, I was listening to Suzy Orman one day on the public radio. And they had a packet of information you could get from Suzy. And it talked a lot about preparing your will, preparing your trust papers. And I ordered it. This was like five years ago. And I completed what she said. And one of them was, make your decision and send a letter to your doctor. So my doctor has it in my records, my wishes. Besides this, my doctor has it. And I have copies in my safe. And I've told my children about it. So they're well informed as to what I want. Things can change. But right now, yeah, right now I have it all prepared. And I have the option to change it if I wanted to. With the bill that's before the legislature, Medical Aid and Dying, that is one of the really, it's real clear that if you request the medication to assist you in passing, if you want to change your mind, there is a provision that says, you can rescind this request. Things do change. People do change their mind. And so there is a competence. So you can do that. And you can do that. That's one of the options. Right. That could be one of the criteria is that you be competent. Yes. And so I think that's one of the things that people get scared about. Yeah. Oh, what if? All the what ifs? Yeah. And I think the bill is really, well, it comes from state after state after testimony after testimony. And so all of these things that people have been afraid of are addressed. Yeah. The one that I think we haven't talked about. And so many people say all the what ifs. And that's coercion. And that if a person coerces the dying, the patient, that there is a felonin, a class A felonin for that. So I really think that we need to talk, not just you and me, but everybody needs to talk about all of these safeguards so that we don't get rid of grandma, that all of these things have been thought out, all of the what ifs have been answered so that people are comfortable with making choices. I think when you talk about dying, you also have to talk about living. And the wonderful thing about your theme here navigating the journey is that there's also a story about snowflakes. There are no two snowflakes alike. And why is that? Because they all navigate the journey in a different way. As they're falling from the sky, each one of them has a different wind temperature. They bump into each other. That changes them. They bond. They don't bond. As they fall, they have a different journey all the way down. They have the same goal. They're both reaching the end, but they have a different journey. And that's the same with all of us. And I think we have to value our journey, that I have had a wonderful life and I would like to end it in a wonderful way also. And I've been very clear to my children I've had a wonderful life. So when it's time for my end, I will be accepting it and welcoming it because I've had a wonderful life. With my mother, we had her at home for the last year of our life and then with hospice at the end. And hospice was wonderful. There were, of course, she had emphysema. Every breath was a labor. And I so wanted, is there anything we can do? And of course, they did all they could, naturally. But it still weighs on me and this is such a wonderful woman, such a strong, strong woman. She believed that because of her, the sun rose and the moon, yeah, all of it. So watching this strong woman waste away was hard. However, we made it such a beautiful passing that with hospice. And she had, I made, you know me, I make a big deal out of everything. So I had made a big deal out of, well, she was with me when I took my first breath. Therefore, I needed to be with her when she took her last. So I crawled into the bed with her. And so that last day, that last hour, I was with her. And that was such a wonderful thing. No tears, no drama, just being at peace and watching this beautiful thing. And then all of those, that suffering was gone and her complexion was beautiful. And everything, all of that was just gone. It was so wonderful to see this. You said something that reminded me also, I heard about Gladys Bratt when she died in her 90s that she was at Queen's Hospital and the children that came in our school came and serenaded her in the hospital. I think that's something we need to put down in the way we want to pass also. What music do you want? I mean, I love, I'm an Errol Garner fan. I love his piano music. I would like, oh, Errol Garner music in the background when I'm playing, things like that that would create a beautiful passing for you so that it's not just what you say I take a pill and I'm gonna die, but that you want your family around, you want the certain kind of music. You'd like to smell plumerio, you'd like to smell pikaki. You could put those things in. And there's nothing morbid about that. It really is how you want to live. That's how you lived and that's how you want to die. Well, Mama's favorite was Nasundarma. And so we played. Sure. And just let it put on loop and let it play. Yes. And then with all of, when she did pass, my friend came in and they bathed her in some kind of Hawaiian oil and put these beautiful sheets on the bed and the flowers and everything. And the hospice nurse had the greatest control of her voice you've ever heard. And she sang and I invited all of the family, the chaplain from hospice, everybody. And we had this beautiful ceremony, bedside ceremony right away. And it was absolutely wonderful and beautiful. So that's what I want. So everybody, all of my family knows this is what I want to do. We practice, we know. We know exactly what to do and how to do it even though I did tell them to push me over the drink. But they won't do that. Well, and when my mother died, my daughter, my youngest daughter, Laura, came and gave her a manicure because she always liked to have a manicure. She always liked that red nail polish and always liked to have her nails looking good. And so she did that for her. And my brother thought it was morbid, but we just thought it was very nice from a woman's point of view that this was what she wanted. And I'm wearing red today. This is a favorite color of mine. And this is National Women's Day. International Women's Day. Yes, and I thank you for being with us today. This has been a real pleasure. Can I say one more thing? Yes, you may. What we have to worry about is ageism. There is more ageism about aging. And I think that's one of the barriers we have to face. There's so much talk about anti-aging, anti-aging. And what is that? Anti-growing old. So I think we have to be very careful about ageism as we grow older. Thank you. Thank you. You're welcome. Thank you. This has been a real pleasure. And you must come back again. Thank you. Aloha. Aloha. Please join us Saturday as we walk on the wild side. We will have a booth at the corner of Nuuanu and Pawahi Street. Come get your passport stamped. Come join us. It's going to be a wonderful day. All of Fort Street Mall and all of Chinatown will be alive. And it's a scavenger hunt. And you've got to play the game and stop at our booth and get your passport stamped. Again, thank you. Thank you. Thank you.