 Aloha, I'm Marcia Joyner and we are navigating the journey. It is dedicated to exploring the options of choices and the end of life. Every life is unique and as such every passing should be unique. So we are here to understand all of the different options we have at the end of life. The choices that we can make and how we get there. Last week we talked about the state and it's interfering as I like to think. Maybe I missed something there but that's the way I feel about it. And today we are going to talk to Mary Steiner, my dear friend, my new best friend. She is the Hawaii Campaign Manager for Compassion and Choices, a non-profit organization based originally in Denver and which is committed to improving care and expanding choices at the end of life. My dear friend, Mary Steiner. Marcia, thank you so much for having me on today. This is very exciting and it's just wonderful to be able to get the word out to our community about what we're doing. Now tell me about you are one of the oldest organizations working to remove the obstacles to choices and options we have at the end of life. So tell me about the organization, how it got started and what you do. Compassion and Choices started many years ago and it has been through several iterations and different names. Many of you might know the Hemlock Society as one of its names and over the years it became Compassion and Dying and then it became Compassion and Choices. The organization was set up initially to advocate for what everybody knows as death with dignity and we now call medical aid and dying. And that's the option to be able to have a prescription written for you at the end of your life if you're terminally ill and mentally capable to take a pill and end your life peacefully. So that seems so normal. So basic. Yes, so basic. So what is it that's the impediment? What is it that keeps us from getting there? Well I think that there are a lot of things that keep us from getting there. Just to say one more thing about Compassion and Choices over the years because I would be remiss if I didn't that we support, we educate and we advocate. We advocate on certainly medical aid and dying and we work with individuals who are terminally ill and we also work with doctors to explain the issue. We're now spread out into the working with the federal government on helping Medicare to get more involved in end-of-life issues and we're working now with people to get them to be able to talk easily, more easily about their end-of-life and dying and talking to families. It's really important that this be a shared experience and that all and the family should be brought in as a whole for support. It should be spiritual and a family decision. I feel that way. I think that dying should be as sacred as birth. This is all a part of life. I was born in the country in a little place called Brazil, Indiana and at the very time that I was born in the same bed that my mother was born in, my grandfather who was a hundred years old was dying and so the whole issue of having him in the same house at the same time, there was no issue. That was just the way it was done. Well, we did. Yeah. Right. Right. And that's one of the ways I keep track of when he was born because you know the date is. But there was no issue about that and it was a sacred thing. I think that what's happened over the years in yours and my lifetime is that we've seen the technology has been able to keep us alive much longer than it used to and that sometimes that's, I mean mostly that's always a really good thing. I mean they're coming up all the time with treatments for different kinds of cancers that people can now beat cancer, can live for a really long time after they've suffered cancer. But on the other hand, sometimes enough is enough and it's too long and it can be painful and there needs to be a system in place to say that's it. I've had enough. I'm in, I'm in insufferable pain. I really can't do this anymore or put my family through this anymore. Do you have, you mentioned talking to doctors, do you have a way of educating doctors about this? Doctors are trained to save lives and they do all kinds of things even when it shouldn't be done. You know they keep, they keep giving you treatments and they keep giving you treatments knowing that you're at the end. But there's something in them that says we have to keep going. Do you talk to the doctors and say well wait a minute, maybe this treatment isn't the right thing to do? Maybe, I don't know, how do you do that? We think, well the Hippocratic oath says do no harm, which most doctors have interpreted over the years as saying they can't help a dying patient to any further because then they would be doing harm. I think we need to be looking at it and saying well perhaps what they're doing really is more harmful. And so there's a fine line there and yes we do talk to doctors and Compassion and Choices has someone on the national level who that works with a group called Doctors for Dignity and they are all physicians and they are all physicians who believe in medical aid and dying and are working within their own local societies as well as with the National AMA, American Medical Association, to move medical aid and dying into the mainstream. So with the AMA and the doctors and the hospitals and all of that stuff and maybe I'm being cynical, how much of this is just making more money? It costs an awful lot to keep doing treatments and doing treatments and doing treatments when they know that that's not going to work, that this is the end. How much of that? I don't necessarily agree with that position. I think that at least the doctors that I know and talk to and my own doctors really care about the people that they are caring for almost to the point where they can't let them go and that's the opposite end of that problem. It's like well let's try one more thing. Let's do another thing. Let's see what we can do to make you, to keep you alive a little bit longer. Now let's go back to looking at this nationwide, this whole idea of allowing people to make choices, allowing people to decide how and when this is the end. How do Americans across the country feel about this? Have you done polling? Do you have statistics? How many people? The polling has been very favorable by people across the US where I believe it's a Gallup poll where 70% of Americans are in favor of medical aid and dying or death with dignity. In Hawaii, the last poll that was done is in 2011 and 73% of people here were in favor and we're in the process now of polling again as we move toward the new legislative session. Wonderful. Let me just take a break here and allow our audience to call in if you choose to ask Mary a question. The number is 415-871-2474. If you want to ask Mary a question please, she's the expert and we would love to have you talk. Now in other states across the country how are their laws being handled or are there? It's really a multitude of different ways that this has been passed. It's been passed by legislation in a couple of states. It's been passed by ballot initiative in a couple of states and in the case of Montana, it was actually decided in the courts. For example, and I think a really very recent example was the election in Colorado. What was that? Two weeks ago now, which some of us may or may not want to remember, but that election proposition 106 was on the ballot and people voted in favor of Prop 106 to allow medical aid in dying by 65%, which was very high. But interesting, it was exactly just about exactly where the polling had been before the initiative was undertaken. So that was a very positive response. What about other states? Washington DC right now has just passed through the Washington District Council and to get anything through the Washington DC Council, it basically takes, it literally takes an act of Congress I understand. It does. So eventually it will go to Congress and will have to be approved. But in the meantime that's how they've chosen to do it. And well, where are we with the Congress? Do you know? I have not, we don't know with our new Congress where it's going to be. I shudder to think. We do know that it won't be done before the new administration takes hold. And other states, you said, what was it? California. California did it in the legislature and that was just effective. I think it was last spring, it had been effective. And in that case, Governor Jerry Brown actually signed it into law with a statement and I wouldn't pretend to be able to quote it. But essentially what he said is I'm not sure that I would take advantage of this, but I can't stop other people from taking advantage if that's what they feel they need to do. I think that is my position, that we as a public should not be able to stand in your way of how you want to choose this. This should be, that's what we're talking about. This is your choice. It's a choice. I think it needs to be shared again with your family, with your doctor. I think going back to what we were talking about earlier, it's extremely important for you to talk to your doctor very early on to find out where your doctor comes down on this issue and to let your doctor know how you feel. I mean that's part of the whole getting the word out about this to begin with. I know I said it to my doctor and she said to me, I agree. I hear you loud and clear. Well I had the same conversation with the doctor and needless to say she wasn't surprised. No, of course not. Yeah, I don't want to be wired up and in the hospital with people I don't know and all of this stuff. And so no, she was really sweet about it. She should have not surprised. But unfortunately here in Hawaii the doctors really are unable to help you legally. Hospice helps a lot and I would never want this anybody to say well I'm going to do this instead of hospice. Medical aid and dying is not in place of hospice but it is just another option among a spectrum of options. So let's talk about hospice and palliative care. What are they and what are they not? Let's start with what they are. What are they? Probably there are other people that could speak better to that. I know that palliative care and hospice care, hospice care particularly is to, you can enter hospice if you're terminally ill, same as with medical aid and dying what we're proposing. Six months or less to live and you can go into hospice where they will help you treat your pain and help you end your life peacefully. But they will not provide you the medication that you can do it on your terms. And that's really where the difference comes down. And palliative care is? Palliative care is a whole spectrum of pain relief. Palliative care could be somebody who needs to be relieved of a pain that they're going to get over. I'm having a knee replacement. Help me with my pain. On the other hand if I'm terminally ill or I was just reading today about people who are taking chemotherapy and palliative care is turning out to be very helpful to people, some people on chemo as well. We have to take a break and when we come back we are going to delve into something new, brand new, and that is truth and treatment. I just read about it yesterday so this is brand new and hopefully we can find out what truth and treatment is. 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 ThinkTech is called Healthcare 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 health care system and any challenges that we face here in Hawaii. We hope you'll join us. Again, thanks for supporting ThinkTech. Hello and Aloha. My name is Raya Salter and I am the host of Power of Hawaii where Hawaii comes together to figure out how we're going to work towards a clean and renewable energy future. We have exciting conversations with all kinds of stakeholders, everyone who needs to come together to talk about renewable energy be they engineers, advocates, lawyers, utility executives, musicians or artists to see how we can come together to make a renewable future Tuesdays at 1 p.m. We're back and as I said earlier we're talking to Mary Steiner from Compassion and Choices and I just got an email yesterday and apparently Mary did too just yesterday about truth and treatment. Now I'm going to read this to you because I'm not really familiar. Truth and treatment seeks nothing less than to shift fundamental attitudes and restore a vision of patients as authorities on their own values and preference. It will reframe the patient-doctor relationship so doctors can turn those preferences into realities and that is a new brand new way of looking at this issue learning to talk to the doctor learning what it is how you the two of you can work together. Now Mary is here as I said earlier from Compassion and Choices and they are one of the organizations that has worked so hard for so long to pass laws in different states. So tell me where we are in Hawaii. Okay that I can talk about for sure. In Hawaii we are working right now with legislators across the board to develop some to develop their support determine what their support is for medical aid and dying we're working on with the legislation drafting legislation we're working with other organizations to all be together when to so that we can move forward as a society if you will of Hawaii to make this become law in the 2017 session. So how can we the public what can we do how do how do you see us as the general public with making these choices and how can we assist in with the legislature I'm not sure where how we should what you think we should be doing. I think that we should be contacting our legislators and saying that this is an issue that matters what we're hearing from legislators right now is they're a little confused because they're saying well where's this coming from what do you mean where's it coming they don't know that people are actually advocating and contacting us contacting other organizations in town to say this is something that that we want we want to be able to have a prescription to get medication if we are terminally ill and mentally capable. So so they're saying where's this coming from as it's an organization rather than the public they need to hear from every one of us so that's right that's where you our audience can help you can help you can help by writing letters to the editor saying that this is an important issue if you happen to have a story if you yourself are ill and want to share your story we will be we are looking for stories because we find as what happened within California with Brittany Maynard last year she was a young woman who was terminally ill with brain cancer and when her story came out she people just I mean it was so heartbreaking she was 29 years old and dying and she did get a prescription she moved to Oregon to be able to get that prescription which is what are the impetus of making California pass the law so we're looking for stories because I think it always personalizing an issue is really the best way to get something to pass so if you have a story if you have a loved one who had what we would call a bad death which is a really bad term I apologize but there are bad deaths painful deaths horrible deaths let us know you can always contact me and I will know where to take that information I believe that before my like our website I think was up there and my email address is msteiner at compassion ended choices dot org and I'll take it from there and if you want to talk about it on the air we would love to have the stories absolutely yes please call us let us know we would love to have you talk tell your story on there so everybody can share the good the beautiful stories the not so beautiful stories but we do we would like that we would like to share with Mary and the other organizations these stories the issues that people have had to deal with when it comes to the end I think that's a wonderful opportunity of what thank you for for opening that and and we would also like to share your stories if you're willing with with our elected officials because they also need to hear it and if you're shy we could take it and and just record you or we could video you or whatever you would be most comfortable with preferably would love you to come down to the legislature this session and provide your own testimony because that is by far the most effective but we're also looking for letters to the editor we're looking for op-eds we're looking for people who are willing to stand up and say that they support medical aid and dying I think this is a wonderful opportunity and I'm losing my my head set here so I and huh no I don't know I can't hello and welcome to the Savvy Chick show on Think Tech Hawaii I'm the weekly host at 11 a.m Honolulu time I'm very excited for the next six weeks we have the Aspire series which is all about the coolest careers I could find and interviewing and getting insights from these amazing people who want to share it with you and help you live your dreams look forward to seeing you on the show hello huh my name is Ray Tsuchiyama I was raised in Kalihipalama proud graduate of Farrington High School and I want to say that Think Tech is a great program brings people together and creates a really great community of concerned citizens for the future of Hawaii thank you Hawaii Asia in reveal I am Johnson Choi the host I'm looking forward to see you next month December 15th Thursday 11 o'clock right here again you know let's go back to uh the doctor prescribing something for you to take uh how safe is it what is it and how does it work and who is eligible to receive this drug I'm going to work backwards a little bit because to be eligible you must be terminally ill mentally capable to make your own decision and you must be able to ingest the medication yourself which is what makes this different than say euthanasia yeah you have to be able to take it yourself so so a person that is has dementia of Alzheimer's is not eligible sadly no they're not eligible for this yeah type of prescription no yeah so so I can't as a family member I can't coerce you into you know we can't get rid of grandma right no and and and believe me we're not we're not advocating to any kind of coercion of any kind at all in fact if you look at the Oregon statistics where a medical aid in dying has been in effect for 20 just 20 years now I was reviewing the 2015 health statistics and there has not been one not one single account of any kind of claim of coercion at all and I believe there have been very few mentally people that have been referred to in 2015 I think there were four people that were referred to to psychologists or psychiatrists because to check their mental capacity as well so you have to be of sound mind to do this right and and also you have to be able to swallow the medication yourself pretty much yeah and doctors when we get to the point of being able to pass a bill here which we hope will be in 2017 that's what we're counting on everybody everybody please we that we will be working with doctors and training them on what it is they need to do and what they need to know and reviewing the clinical criteria for them so that they know the what to write for and how to do it and we'll be working with pharmacists as well because they'll be needing to fill these prescriptions so that they're safe they're effective they've been proven as what I'm saying they've been very well proven again and going back to Oregon which is where we have the longest amount of statistics so they've been extremely set extremely proven I don't want to say now going back to Oregon how many people in the 20 20 years 25 years how many people have been given the prescription and how many people have actually done it as a percentage of the overall people that have died I can only tell you it's a very small percentage I can tell you that in 2015 which I did my studying on 218 prescriptions were written and 132 people actually ingested the medication because that's another issue is that not everybody who gets a prescription actually takes that prescription so if I get the prescription does that give me a certain level of comfort that I am now in control I think that's exactly what people feel is that they can if it gets unbearable then they are in control and can and can end their own lives yeah and what happens is but people don't want to die which again which is why this is not suicide or assisted suicide as it's want to be called because people do not want to die they don't want to take medication they put it off as long as they possibly can because they want to be with their families and they want to be with their loved ones that you hit on a really scary word and that is suicide please tell us what how this is not I actually use two two words I think that are scary one it was suicide and the other is euthanasia and this is neither one of those because euthanasia is when somebody does it to you right um which is why when you know we when dr kivorki and had done was to set up a machine and actually inject somebody this is not that this is not suicide because people do not dying people do not want to die they don't want to take their own lives sometimes they have to in states where there is not authorized medical aid and dying that gets so unbearable and that they do end up taking their lives by violent measures so this helps violent deaths go down in regular suicide rates one this is in legal well you know mary it's a pleasure having you now for those of you that mary is about to enter the world of artificial knees and I love it official welcome I'm welcoming you into the club of people that have new knees mary is going to have her surgery pretty soon and so we wanted to talk to her before she goes off into this new world before she goes into this new world and you will love it I trust me you will love the new knees I can't wait you can't wait can't wait thank you so much all of you for being with us today again we need your help we need you to talk to your legislators to call us if you want to tell your story we would love to have you on the air so we can get your story out we need you the only way we're going to make this happen is with you again thank you so much and aloha