 Marsha Joyner and we are navigating the journey. Navigating the journey is dedicated to exploring the options and choices for 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 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 ending. Together we can make this difficult conversation 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. As you know, we are supporting legislation to have death with dignity or medical aid in dying made legal in Hawaii. The Senate bill is being heard at the Capitol as we speak. Therefore I have invited Walter Peters, of course, a dear friend, who has experienced the real turmoil of the end of life of a loved one when that person had no options or choices. Today's guest, Walter Peters. Walter? Hi, Marcia. Thank you so much for coming and thank you for being willing to talk about something so sacred, so close to you. Sure, you're welcome. So tell us a little bit about you first. Oh gosh, well. Okay, a big bit then. The Reader's Digest version. So I was born in Santa Monica, raised in Southern California, Hawaii. I mean, Beach Boy, right? Surfing, hiking and all that stuff. And I bought the publicity when they said LA is the place. I was like, yeah, it's the place, the mountains, the ocean, the forest, above it. But then when I was in the Navy, I came here and I was like, they lied. This is the place. So I moved here in 1991. Still the best decision I've ever made in my life. I just love living here. I own two companies. One is a small remodel and repair business. I fix people's houses and the others are coaching practice. So I consult with people about their mindset in the areas of sales or maybe executive management, things like that. Yeah. Okay. And I love to cook. So that's my thing. You know, I get out my roller decks. I first six people that say, yes, that's my dinner party. Very good. Very good. You have special recipes you like? I make them up. So, you know, it's like, there's a few that I like old standards that I like, but I like discovering what I don't know about cooking. Come up with something new. Very good. That's great. Okay. I'll be there. Now, I've known Walter for what, four or five years now? Well, let's say it was 2012 we met. Walter and I sat next to each other at a dear friend's husband's funeral. Right. And that's how we met. That's right. And so here we are again talking about the end of life. Walter's sister, is this correct? Your sister was terminally ill and she had all kind of stuff. So I want you to tell us all about your sister. So my sister, first of all, she saved my life so many times I can't even count. She was born when I was 12 and I was in a war with my mom and my mom was winning, but I was still fighting. Right. And my sister was born and I was just fascinated with this infant and my mom goes, oh, this is your job now. Right. And so at the age of 12, now I'm dad. Right. But I was not my own. I had support and all that, but it just transformed me. It really changed who I was being in life. And so she was there for me throughout my life. I was there for her throughout her life. And then 2012 she had breast cancer and that was treated and they did whatever they did and she came away fine. 2014 she found a soft spot in her head and she went into the place and they did a scan or whatever it was and they determined that it was bone cancer and it was in her skull. But for whatever reason they didn't operate immediately. By the time they did operate the tumor had migrated into her brain so that when they did operate they actually ended up removing a small portion of her brain. It turned out to be the part that controlled her left leg. So she went from being this vivacious, brilliant, active young woman to a wheelchair bound patient for the rest of her life. And so she was that was when she was 42. Oh okay. So then she she seemed like she was recovering. And then in Christmas of 2015 she she sneezed. She had a pain in her shoulder and she hadn't gone in to have it looked at yet but she was going to. She sneezed and snapped her collarbone because there was a tumor there. So they went through the whole treatment protocol again radiation chemo all the things that they do for bone cancer. And again you know she seemed to be recovering. She was getting better. I still have on my phone a voicemail that she left for me in July. And she was singing to me she goes I have no pain I have no pain this is your sister and I have no pain. And that was in July well in August she and her husband were getting in the car and she her left hip collapsed. And she just you know she heard a snap and whatnot. So instead of going to the show they were going to go to they went to the ER instead. And they did all their scans of what it was. And they said well you have a tumor in your hip. And it's so deep and for us to go in and operate on it is not necessarily safe because there's so many complications that could occur. And we can't do any of the treatments that we've been doing on you because we've depleted your body's immune system so much that there's barely anything left. So for us to do chemo and radiation would be probably lethal. The operation we have no way of saying to you that it's going to be safe or that you'll survive it or that it will even work. So you know you need to go home and and just be ready to pass. And so she did and that was August and you know we were in communication I talked to her in September and I told her I was getting things together to be able to go up there and be with her and she said well hurry up and get here. And that's that was a shocking thing to hear her say because I knew that she was telling me there's not much time left. So you know I unfortunately have a great community of whom you know. And and so people pulled together and I got on a plane and I was there for the last month of her life. And you know the hardest part of it for me was just watching her deal with what she was going through because you know it was very painful to have a really deep break inside the bone. So they had all these different medications one the primary medication was for the pain but then she had three other medications to deal with the side effects of the medication for the pain and they all had other side effects. Yeah and I'm sitting there I'm watching this this person who I know is my sister but looks nothing like the brilliant vivacious woman I've known her whole life. And she's you know in discomfort and she's of course grumpy because she's been in a wheelchair for two years already right. And yeah she's like irritated by the smallest things right. And and tremendous discomfort in her digestive tract and her breathing was bad and her throat would get congested and it was just hard to watch her struggle. You said she was a 42? She was 42 when they found the tumor in her skull. Right. She was 44 when she passed two years later. She had that torment for for two years. Yeah but it wasn't always that bad right. I mean but whenever the the treatment was going on it was it was it was just horrible you know. I mean and so yeah you know there I was and I just was about how do I be of service here. How do I support her to get to whatever it is that's next for her. And I can't even tell you how many times she told me that she wished it was over. In fact she and her husband shared with me that before I got up there in October she had gone to see one of her oncologists and during her visit he turns and he looks at he goes you know I can't believe you're still alive. Now a doctor doesn't generally say that to you right. But that's was he was like how have you lived this long. And it was that was the thing she was like I don't know doc. But I think it had to do with the fact that she was very active very energetic. She was that she danced you know she was a professional dancer for a while she she was a public speaker. She was a very high energy type of person and she always always really committed to organic foods and all those types of things. So I think she had a good body going into this. She had done such a good job taking care of her body that it was in pretty good condition when these other things happened and it just it was just going to it was going to last a while. Well you know when you mentioned what the doctor said I've talked to so many patients since we've been doing the show and they tell me that the doctors have no idea what to say. Right. Just they don't know. Yeah. Now one thing that one thing that complicated her situation where she and her husband live is 40 miles east of Ogden Utah in a valley in the Wasatch Mountains. So her hospice team is responsible for an area of about 250 square miles. Right. So they have just one it's one team. It's a physician a nurse practitioner and three others who I don't remember their titles but they would all come and visit periodically. Right. Somebody would be at her house at least two or three times a week. Right. But they would say well we'll be there at one o'clock but the truth of the matter is wherever they were before if it took them a little longer there's nothing they can do they got to do they got to serve that client and then they're on their way so this time they wouldn't get to her place till five or six thirty. But that wasn't the issue. The issue was that because the team was so spread out and only certain people on her team were empowered to actually make treatment decisions for her that it would take there was a delay between when a decision was made and when it got implemented and and towards the very end you know they they they modified her medication like three times in two weeks while I was there and but there wasn't any way for someone to be there to monitor the impact of the new medical the new medication protocol they put her on like to see how's that working yeah right because she was at home it wasn't she wasn't right facility so that that complicated things and it was it was it was hard for her it was really hard so but but she was given regular sedation and pain meds they had pain medication you know I mean she was uh when I got there she was undelotted and then they went to an oral morphine tablet and then they went to a liquid morphine you know with a dropper dropper yeah but all of those are opiates right and so all of them have the effect of clogging up the digestive tract which meant she couldn't eat well and and it was she had a really hard time keeping food down when she did eat um so yeah it was it was so you were there for until I was there a month a month yeah the last month of the life the last month of her life and so you you got to visit and talk and oh yeah spend and then of course family and and our husband's family is huge and he's from Utah no he's they're actually both from southern california but his his previous generation was from utah so his his father and his uncles and and grandfather them they're from a place called greenville which is in south of Utah and and that's and but they but where and that and danny were living was north and east of salt lake yeah well we are going to take a break sure and when we come back I want you to if you don't mind telling us about those last few sure okay yeah hello ha my name is josh green I serve a senator from the big island on the conus 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 health care system and any challenges that we face here in hawaii we hope you'll join us again thanks for supporting think tech hello my name is crystal let me tell you my talk show I'm all about health it's healthy to talk about sex it's healthy to talk about things that people don't talk about it's healthy to discuss things that you think are unhealthy because you need to talk about it so I welcome you to watch quok talk and engage in some provocative discussions on things that do relate to healthy issues and have a well balanced attitude in life join me I'm bill sharp your host for asian review a weekly um show right here on think tech hawaii that's devoted to substantive analytical discussion about contemporary events in asia by asia we mean anything from hawaii west of pakistan and from the russian fiery south to austria and new zealand hi we're back and this is my dear friend walter peters and walter has been telling us about the horrors that his sister went through living in utah which is basically a Mormon town state and without the choices and options that we here in hawaii are are working hard to see that our people do not have to go through what his sister went through which is why i asked walter to talk about it because from for so many of us it's just this piece of paper that says this is a bill and then somehow we get to the end and say oops this is what this was about right so walter again tell me now your sister was 45 44 years old 44 yeah and she had she had terminal cancer she actually had three cancers three different cancers so here's what it is the breast cancer even though they successfully treated it it actually is never gone and yeah i know it's still in the body yeah right you know she had that she had bone cancer which was very active and aggressive and the third one i'm trying to remember oh yes it was on her lungs and what it was is she'd had so many um x-ray workouts over the period of time she was in intensive treatment that the x-rays had actually caused lesions on her lungs which had made it really hard for her to breathe and to to sleep well and it had it had metastasized the bone cancer somehow had affected the lungs to where she now had a lung cancer going on so yeah so she had three three cancers and any one of them would have taken her out eventually it's just hard to to imagine yeah what what she went through so now you you stayed with her for a month right now tell us about this last part of the month of the of hers being she had hospice she had hospice yeah and but it's not like what we know here where they they're there every day because we have so many yeah actually you know it's a funny thing the the Mormon community right they have so many different service organizations within their community structure that she had people coming by the house these are not you know medical professionals they're just folks who cared right they'd bring food and they'd do a massage and they'd help her whatever it was they cleaned the house you know I mean without them it would have been a lot worse because her husband you know wouldn't been able to go work right right and that's one of the things one of the benefits of me being there for him was he could go work and I could help take care of her so yeah it was a community process for sure now even though she had all these drugs was it a peaceful passing was it no no I mean it was she was tremendously uncomfortable part of it is that you know bone cancer it's it it it just hurts being there yeah right and plus she'd had a break in her bone you know in august and here we are in um early october and nothing's been done about the break in the bone right so she can't there's no position she could get into where she had zero pain without medication so she was constantly on some medication and you know we had all these different uh apparatus you know a chair that moves and whatnot to try to hold her in a position that's the least painful and all that but the bottom line is that she was always have always medicated and the medication had impacts on her besides the one that was desired and she was just suffering I mean I I cannot count the number of times that she said to me how long is it gonna take me to die because the doctors thought that she'd already be dead right um she had been told at least three or four times that you've got three to six months to live right yeah that was three years ago oh my god so it's just like how long is this gonna take how long do I have to go through this how long do I have to do this suffering thing so yeah it just got to the point where it didn't make any sense to to prolong it if there was any way to make it happen sooner that was the thing to do yeah well you know I think I need to make it clear to our audience that in this bill in the bill that's before the legislature now it talks about the fact that the patient not the doctor not the family the patient like your sister right can say the cancer has eaten me up yeah I am not taking my life Mike the cancer is taking my life yeah it was already like there was no questions about whether she was gonna live or not the only difference is how long is it gonna take yeah and why should she have to suffer like that right why should her husband have to suffer why should you have to suffer like that yeah I mean that's just inhumane to make a person do that right so now once she's in this did they do terminal sedation that's when they well there is I don't know that there's an option there's an option for that and you know we have a mutual friend that's a retired nurse and of course I was on the phone with her a lot you know about what could we do and what not and she was making recommendations but again the hospice situation right the time delay between having an idea and a decision and a request and having to actually get implemented that was unworkable um so we it just turned out that um that that might have been an option and that's not how things turned out we actually got into communication with an organization that's a national organization that um that assists people at the end of life and um and they explain to us their process and what they do and uh and but they have all these protocols that they have to go through to protect themselves oh yes because there's going to be somebody disgruntled about it yes right so they have to they they have to go through a whole bunch of uh steps to make sure that they remain anonymous and and uh fortunately we didn't have to go through all that um but yeah so it just but but they showed us how we could support her so that we could support her to get complete good because uh just to explain to our audience that as the law stands now in Hawaii if a doctor uh prescribes something so so that the patient can in fact right end the suffering uh if there's a disgruntled person the doctor might be charged with manslaughter right so there's all the bill protects the doctor right and you know to keep it's just hard to believe that somebody would be charged with manslaughter when their intention is to assist this person to end the suffering and in the bill the doctor does not touch the patient right the patient has to ingest it themselves they have to do this right um so i'm back to your sister so so tell me did she finally did you how did how was the end well did i'm gonna walk i'm gonna walk discreetly okay and um she had assistance yes and her end was peaceful oh good and um her husband and i were there with her and um and the only thing i can say is that everybody was relieved that it was finally over you know there wasn't anybody going oh too bad no it was everybody was like thank you okay now what do we do we take care of what there is to take care of but um but yeah it was it was challenging um to just be in that space just be there with her as she's going through so much struggle and so much discomfort and and you can just see the agony that she's going through i mean i don't i'm not even gonna get into the things that i needed to do for her to be able to breathe it was just not i never want to see a thing like that again in my life but that's what it took right but that was just so that she could get air not any you know comforts just to be able to breathe i had to go through all sorts of things just to be able to clear her airway was it was hard so so to be able to you know to know that she was uh find me a piece was just the biggest relief yeah oh yeah i asked walter to come so that we could hear first hand this sort of thing what it does not only to the patient but to the family because we want this bill to pass so that the people what's her name annette so that that there aren't a lot of other annettes yeah we have to have it passed so that people well you know here's the thing this is what's so had there been legislation like what you're talking about in place there and then her suffering could have been diminished tremendously and her actual end process could have been much more comfortable for her and you and us and us absolutely could have been but uh you know that's just that's not the case yeah you know and you've got people who um basically what what the law currently says is that doesn't belong to you we will tell you when you can go you will tell you when it's okay versus that's yours do with it what you will what amazes me is that if you're in the hospital at ten thousand dollars a day they can turn off the ventilator which seems terribly cruel yes or you can decide not to have food and water that that's just all of that seems cruel yeah and or they can do terminal sedation which is they give you some kind of a drug right and then they keep drugging you till you right well you're unconscious and you go right which again seems if all of that is legal then why is it not legal to allow a person to choose give them the doctor just writes the prescription he doesn't touch so if your sister had that and and she said it would give her comfort to know right that if i want this if this becomes too hard i have something right and in the bill you have a right of refusal right if you order it and then you say i think i changed my mind you don't have to take it right and it just seems so humane and listening about your sister i just hope and pray that we enough people will write about annette in the name of annette and say we've got to pass this we can't have another annette yeah well the reality is that there's so many there are so many and you know the way things occur right now it's just not my experience i mean i'm not an expert but it's not my experience that the patient is the highest priority i just know how it looks to me when i see the system and what she went through you know it just it doesn't doesn't show up to me like that her well-being comfort and peace were the highest priority in the system it didn't show up to me like that and you are correct yeah and g walter it's been a pleasure spending this time with you and i can't help but cry thank you thank you so much i hope we have an impact