 I'm Marcia Joyner, your host for Navigating the Journey. Navigating the Journey is dedicated to exploring the options and choices for end of life care and to assist people talking 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 for ourselves. We believe that the place for doing this begins not in the intensive care, but together 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 you navigate the journey, explore the options and choices at the end of life. This is a conversation that every one of us needs to have, yet few are prepared for in life. Too many people in our society have no idea how to properly help a loved one who is at the end of life. We don't know what to say, how to act, or what the needs are for our loved one. Today's guest is my dear friend, Scott Foster, co-founder and communications director of the Hawaii Death with Dignity Society. Aloha, Scott. Aloha, Marcia. I'm so pleased to be your guest today. Well, I have asked Scott to be with us today for all the reasons we just laid out. Scott has been, I'll let him tell you this whole story, but he has witnessed so many people at the end of life and the agonies that they've gone through that I really wanted our audience to know the depth of this and why we are advocating that there has to be a way of assisting people at the end of life to make that last journey comfortable, that that last journey should be as sacred as the first, that the end of life should be as sacred as birth. So with that, Scott can welcome. Scott and I have been together for so long through many of these, but Scott, tell me first about your journey with so many. I know your mother and father and all what not. So let's start at the beginning. The beginning? Well, I of course was there for the death of my grandmothers. I didn't have grandfathers. I'd never knew them. They died before. And just a small child at the funeral. So that's all I knew is grandmother wasn't there anymore. And then my mother was diagnosed with cancer when I was seven years old. And I thought everybody went to school, came home, had a quick dinner and went to the hospital because that's what we did for off and on for two or three years. She had major surgery. We had five or six wonderful years and then when I was 14 she was struck down again with terminal cancer that time. And so I watched her go from a robust, active, vivacious woman to a 85 pound skeleton who could hardly lift her hand and was finally nearly comatose until she went to the hospital and mother didn't come home again. So those memories linger. And then of course through life I witnessed a number of other deaths but never like that until the AIDS pandemic struck. And that's what really opened my eyes about how we die. As many people know, old enough to remember the AIDS pandemic. I moved to Honolulu in 1984. The AIDS pandemic was raging on the mainland. I was very involved with the LGBT community there. And circumstances brought me to Hawaii to live. I discovered that AIDS was not even discussed in Hawaii. And so I got actively involved in the LGBT community and founded the Hawaii Gay Community News that it was known then and jumped right into trying to educate the general public, not just the LGBT community but the general public about AIDS. And during that decade that I was actively involved, I lost, I can't even count the number of friends and I watched some very horrible deaths. And it was during the same period that I met a lady by the name of Andy Vanderbord. Now, Andy was the head of the Hawaii Hemlock, Hawaii chapter of the National Hemlock Society. Andy brought me into the movement and here I am today, the Kapuna of the movement because I'm the last one standing really from those original people. So now you had first hand where you were the caregiver with your wife, Lenny. Now my dear late wife, Lenny, people find it odd that I'm a gay man but I was married to a heterosexual woman. She was my best friend, my soulmate. We came together because of the death of a business partner, my gay business partner and he was Lenny's roommate. And so Lenny was, we were devastated by that because Lenny lost someone paying half her rent on a large apartment and a close friend and I lost my business partner and a close friend. So we moved in together and we just enjoyed one another's company so much. She worked for a large airline and she came home from Greece one day and said, Scott, you know, if we got married I wouldn't have to leave you at home. So we married not just because of that, but and then just shortly after we were married she was diagnosed with what turned out to be terminal cancer. Now when I met you, you were caring for Lenny? Yes, I was her caregiver at home. We did have hospice Hawaii, which was a wonderful thank the good Lord for the hospice systems because Lenny was able to pass in her bed in her little bedroom in our apartment with me holding her hand. So I've seen it all. Was there, was she comfortable? Was there a struggle with his last few? We had heavy meds, IV meds and she had what's called a pick line which was an easy way to give an injection in her arm and I was taught the process. So I was, because I was there 24 hours a day she was very comfortable. Now that was unfortunately having that pick line in her at home was after a series of what the doctors call a breakthrough pain attack. And that's when her pain reached such a level that I had to rush her to the hospital screaming with pain and agony. And this was after two major surgeries and chemo and radiation and all of the heroic efforts that if I had to do it over again I would encourage her not to have done all that. But I demanded that I have been in control for meds. And that's something that people need to understand. They are in control. They can't control everything but they can control a lot that the doctors do. You can't be meek with them. You just have to make your needs known and be very in control. So we had a couple of guests last week in fact and they talked about having a conference when you're in good shape having a conference with your family and your doctor so that everybody is on the same page with your wishes, what you want, what you don't want. So would that have made a difference with Lenny? If we'd had, you'd been able to have. It wouldn't have made a difference with Lenny because we were married and I had the say over it. Right. I encourage everyone who has a family to fill out Bansett Directives now, today. Do it now. While you're healthy and able to think this through one can change those advanced directives as you learn more about the process. But with advanced directives and one can get them online. Just Google Hawaii Advanced Directives, the Elder Law Center at the University of Hawaii. One can get them there. They're very informed at the Elder Law Care Center again at the University of Hawaii. But that's the first thing I would do is fill out the advanced directives as to what your wishes are. Those then, your doctor has a copy of them. If you don't have a primary care physician, any doctor will hopefully help you get them on the new electronic online medical record system that we have. Somehow you need to get those on into the medical record system that's now online in Hawaii. Now tell me this, are you with Tony Aguilar? Tony Aguilar was my best friend. I can't help but smile. We had such good times. I met him after he had already been diagnosed with HIV and I became his entertainment industry PR person. And together we did, I don't know, a dozen big fundraisers for AIDS. And I was with Tommy the night before he passed at home with hospice and I've never seen anyone in such pain and suffering. And that's one of the reasons I fight so far, so hard to pass a death with dignity law in Hawaii is the memory of Tommy's agony. I've heard that story so many times about people being in agony and there's nothing we can do. Is that really nothing we can do? Well, one can take control of their loved one if they have a legal right to do it. Now oftentimes there's a division in the family, especially if there's a very religious family. Unfortunately, what I call the conservative fundamentalist religions, primarily the Catholic church, they'll fight tooth and nail to stop this. And they are the ones that, when we nearly passed the bill in Hawaii in 2002, it was killed dead and I'm not being no pun intended. The death with dignity bill was stopped in its tracks. We lost it by three votes in 2002 and that was because the Bishop of Hawaii had a personally written letter hand delivered to all of the Catholic state representatives and senators and we lost that bill. Unfortunately, that loss since 2002 has caused tens of thousands of horrible, painful, protracted deaths since 2002. Well, hold that point. We have to take a break but I wanna talk about what's next. How do we deal with that? That one group of people can stop another group from doing what they wish. And we now have a break, okay? Aloha, my name is Josh Green. I serve as Senator from the Big Island on the Kona side and I'm also an emergency room physician. My program here on Think Tech is called Health Care in Hawaii. I'll have guests that should be interesting to you twice a month. We'll talk about issues that range from mental health care to drug addiction to our healthcare system and any challenges that we face here in Hawaii. We hope you'll join us. Again, thanks for supporting Think Tech. Hi, I'm Donna Blanchard. I'm the host of Center Stage which is on Wednesdays at two o'clock here on Think Tech. On Center Stage, I talk with artists about not only what they do and how they do it but the meat of the conversation for me is why they do it, why we go through this. A lot of us are not making our livings doing this and a lot of us would do this with our last dying breath if we had that choice. And that's what I love to talk to people about. I hope you enjoy watching it and I hope you get inspired because there's an artist inside G2. Join us on Center Stage at two o'clock on Wednesdays. Bye. Aloha and welcome back and stay with us on this journey as we navigate through the weeds and the muck and the mire and look at all the things that we can choose at the end of life. Scott, you were just beginning to talk about where do we go from here? Now, my own belief is that if you're Catholic and the Catholic Church says this is the way it's handled then that's what you must do. If you're a Mormon and they say this is the way it's done and you're a believer, that's what you do. My question then becomes how is it that they, not just those two churches, but any church can say what the other people that are not part of those religions can do. How is it that they can control the law that says you cannot choose the end of life? Well, it's a very simple answer to that and that is legislation is passed. A number of things that go into it. The more people that turn out to testify for or against a piece of legislation is a large determinant. Now, if what happens in Hawaii is the Catholic Church preaches from the pulpit, the Mormons preach from the pulpit, the right wing, various independent denominations. If they believe that God is telling them to do something, they'll show up. They literally bus in people and you can come down to the legislature when the Death with Dignity Bill is being heard and see the buses pull up that have been chartered by the various religious organizations and they also work with the disabled organizations. There's an organization called Not Dead Yet who turn out disabled people of all descriptions, wheelchairs on oxygen, various terrible disabilities and they give very compelling testimony. What the legislature must understand is unless they're diagnosed as terminally ill with six months or less to live, they're not even eligible to use the bill that we are submitting. So this has nothing to do with getting rid of grandma. This has nothing to do with because you're disabled, you're in the way or any of those kinds of things. This is very clear, the bill is very clear as it was passed, what are the other states? As it was passed in these other states, and you have to tell me about this, don't they have very strict do's and don'ts of who can benefit, who cannot, how it's prescribed, what are the, tell me more about the bill itself. Absolutely, we call them safeguards and just for example, two physicians must agree on the terminal diagnosis. The person that's asking to use the law must be mentally fit and physically able to personally drink the drug themselves. So there are many other safeguards but those are just some of the basics. As far as the states, I sat down this morning and wrote out a list here. Oregon was passed in 1997. Now the important thing about Oregon in 1997, we now have all of that data from 1997 and it's available online. You can look up Oregon Death With Dignity Statistics, Google that and you'll find the number of people that received the prescription and the number of people that actually used it. So what you're saying is that just knowing that you have this ability eases things, whether you take it or not. Absolutely, and in fact that's one of the most important points to bring up. Somehow, psychologically, if there's a remedy sitting on your nightstand and you're able to take it that relieves you from worrying about are am I going to have terrible pain? Am I going to all the horrible things that come at the end of life? Can come at the end of life. If one is lucky, they go to sleep one night and don't wake up. If one is lucky, they have a terrible heart attack that kills them immediately like a wonderful promoter died yesterday at 85, had a heart attack, dead and gone. If you're not lucky and you're facing six months or more of a horrible, horrible illness, then just having that. Now after Oregon, I'm putting, that was 1997, Hawaii was in, we tried to pass the bill and came within three votes and I told you what happened with the religious. So what year was that? That was 2002. So it's taken that long to get back to where we are today? It's taken that long to get back. There are a number of reasons. Governor Ben Kaya-Tunno was actively involved in 2002. We lost by three votes and then we had a Republican governor elected and there was no way that she was going to sign it. So we lost the momentum on it for eight years and we've been trying to rebuild ever since. Now, the exciting part is, Washington State was passed in 2008. Montana was passed in 2009, although Montana, that was via their Supreme Court ruling. Someone filed suit as making, as a civil right and the Supreme Court of Montana ruled. Vermont was passed in 2013. California, which was a huge victory, was just a year ago, 2015. Washington DC was passed in November of this year, just two months ago. Now that has to be approved by Congress because it is Washington DC. Anybody's guess on that, especially with the new Republican takeover? Colorado, November 8th of this year and 20 other states this year, right now are going into session, including Hawaii, where bills are there to be debated and hopefully acted on. So the time is here. Yeah, so when we look at, again, the Bible gives us a free will and that we can choose. And it's very clear how it talks about free will. The Constitution of the United States and as upheld by the Supreme Court, that we have choices that we get to choose. I get to choose who I marry, I get to choose what school I go to. It seems to me that we should be able to choose how we want to end this life. We've heard so many beautiful stories about so many other traditions, how they assist the person to, in a loving way, to the end of this or to make that transition or in the black culture it's called home going. That it seems so difficult for me to understand how it is, again, I've said this before, how one institution can determine the law for all of the others. Because in Hawaii we have Buddhists and Jews and Muslims and Hindu and Baha'i. You name it, we've got it. It seems so un-American that one group, I mean, we've been down this road. We've been down this road about the discrimination and that's what it is. If one group can say, this is what we think for everybody. It seems to me, like in Montana where they had to say this is a civil right, this is the Bible gave us a right to choose. The Constitution gives us a right to choose. How can we not choose? We have this option. We don't have to take it, but we need the option. Well, to me, it certainly should be an option and it should be a right and it should be a matter of choice. But as you know, as with the women's movement, their freedom of choice has been a long, hard battle to get it in place in the first place and it's under attack every year. Every year. So rights, while it may be on paper, one has to fight for it. And if I could, anyone out there listening or watching, if you agree with our position and want to see this happen this year, you've got to get involved. You've got to call your elected officials. You've got to write. You've got to show up and give testimony, whatever you can do, sometimes just a phone call. But Hawaii is reserved and sometimes people don't speak up. But this is the year to get active, to get involved and that's get politically involved. Otherwise this will never happen. Yeah. Well, I think since the Trump election, I have seen more people totally willing to get involved. I haven't seen this kind of thing since the 60s and the 70s. So it's heartening to see so many young people willing to get involved. I think during the Obama years, everybody was comfortable. You know, we said, oh, this is fine. We can, we don't have to worry. And I think that now, so this is a great opportunity. If you've never, ever before been involved, this is a good time to do it. And it doesn't cost you anything. Like you said, a telephone call will do. Our bed, letters to the editor, anything. To let your legislator know what your position is. Yes. And the very simple line on the phone or on a quickly written note or an email is and what will get their attention is. Well, let me say this. Hawaii is the only state where every legislator, city council, office of a wine affairs, their telephone numbers are listed. So that's not a reason not to pick up the phone, do call and again, stay involved. We need to hear from you. And I want to thank Scott for all the years of all of your activities, activism and a dogged determination with this bill. And I thank all of you for being our guests today. And we'll see you next week. Aloha.