 I'm Marcia Joyner your host for Navigating the Journey. Navigating the Journey is dedicated to exploring the options and choices for the end of life care. For one brief moment today, March 1st, I will pay homage to the people of the Marshall Islands who suffered the end of life to their community, their islands, and way of life by a demon created by America's Bravo bomb, March 1, 1954, one of 317 nuclear weapons tests in the Pacific. A 15-megaton three-stage weapon. Early in the morning of March 1st, 1954, the hydrogen bomb, codenamed Bravo, was detonated on the surface of the reef in northwestern corner of the Bikini Atoll. The area was illuminated by a huge and expanding flash of blinding light. A raging fireball, intense heat that measured in the millions of degrees, shot skyward at a rate of 300 miles an hour. Within minutes, the monstrous cloud filled the nuclear debris shot up more than 20 miles of generated winds hundreds of miles an hour. These fiery gusts blasted the surrounding islands and stripped the branches and coconuts from the trees. The decision the Navy made to go forward with the Bravo test on March 1st, knowing that the winds were blowing in the directions of the inhabited atolls was essentially a decision to eradicate the northern Marshall Islands and moreover to irradiate the people who were still living. Military reports indicated that Bravo was the single worst incident of fallout of all the bombs tested. Bravo is not over. The people of the Marshall Islands who sacrificed their home and society for America's nuclear ambition still live in squalid conditions at home as well as homeless in Hawaii unable to live in peace and comfort in their own homeland. That is a journey no one should have to take. Today's guest is on the front lines of the journey. Marilyn Carter, a hospice nurse. Hospice nurses have a particularly tough job because from the outset they know that the patient for whom they are caring is terminally ill. Although being a nurse of any kind is very difficult dealing every day with a dying person requires an exceptional temperament one that embodies great caring, patience and resolve. Marilyn, who also worked at healthcare facilities with a mentally ill, long-term care and rehabilitation patients has that temperament, that caring, that love. Welcome, Marilyn. Good morning. And it's kind of hard to go from that bombing into today but here we are, here we are. So tell us about being a hospice nurse. It's rewarding to be able to help people at their lowest point and help the family's bridge from the sickness to their passing. It's an honor to be with people as they pass. And our main goal is for comfort and support. And it's been a journey. It's been a wonderful journey actually. I enjoy it a lot. I don't enjoy the people passing but I just enjoy being able to share that moment with them and their families. I think that, and just for everybody, I have to say this, that if I sound gushy and mushy, it's because Marilyn is my daughter. So we have to, so somebody doesn't write in and say that's her daughter. But I am very proud of Marilyn and the kind of care and like she says, it's an honor to be with these people. So our program is about the end of life care, about the conversations. The reason for the program is to talk about the issues that we have not talked about, to make it easy for people to talk about the end of life and their options. So that's why we asked a hospice nurse to tell us about this. Tell us first of all about this when you meet a patient from step one, step two, how does that work? Normally they are referred by their physician once the physician has determined that they're terminal and that they probably only have up to six months to live. And at that point we would have one of our liaisons go speak with the family, see if the patient is actually hospice appropriate because there are some situations where it is not appropriate. So what do you mean not appropriate? There's certain diagnosis that for whatever reason insurance will not cover. There are certain situations. What do you mean what like give me an example of who would not be eligible? Well you would have a patient who can care for himself, who is not at that last stage. There are certain diagnosis like we will accept people with Alzheimer's but not necessarily dementia. And so there's certain criteria that you would have to meet in order to fall under the hospice care. So dementia is not a terminally ill, it's not the end of life? No, but it can lead to that. There are people with dementia that we do have because they have gone into a condition where they're incapacitated, where they no longer can speak, where they no longer can walk, where they no longer can do other things. But usually you need something else. Yes, there's a heart problem, cancer, certain respiratory problems, COPD, Parkinson's, things like those. If you have dementia and one of those you most definitely would qualify for hospice. Now tell me what is the difference in dementia and Alzheimer's? That's a great question. There's certain vascular there's certain vascular problems that lead to, there's still a debate about what the difference is. So I, not being not a doctor I can't just say what is dementia and what is all, but there's certain vascular conditions that will lend itself to Alzheimer's. And there's certain vascular dementias. So I said it's a doctor that has to deal with that. I just swoop in after the diagnosis has been made. Yes. So okay, so now the diagnosis has been made and then they are admitted to hospice? Yes, I will come and admit that in a facility or at home or in a care home or in a foster home. And so I would be the one to come and do the initial admission. So after the liaison has spoken to the family, doctors spoken to the family and then it's time to bring them home or to a different facility or to the care home I will meet the family and the patient wherever they decide they're being taken care of. Do the majority of people want to be at home? Yes. Oh, that's great. I said it's great and it it isn't just depending. Well, let's back up. If a patient wants to be at home, but the situation is not great in that home, whether it be there's no one who can be there for them, which is like here in Hawaii that's difficult, everybody has to work. It could be difficult because say it's an older couple. I have been in situations where the say the husband was taken home for hospice. The wife says I'm going to take care of him, but she's 80 and she has dementia. Oh boy. Yeah. And usually we don't really know it until after we get to the home, after we've spoken to her after we have seen how things are going in the home. It could be that the home itself is not there's not enough room. There's not enough room. There's the house itself is really not somewhere where someone should be taken care of because the roof is leaking and the floors are falling in and you know, you'll have those kind of situations. So if there is they say they want to be at home, but for some reason, any of those reasons, what is a backup plan? A facility, a care home, a foster home. And it's not just like okay today we come in we see that it's not inhabitable and then we just immediately get them somewhere. It's a lot harder because of being here in Hawaii we have a limited amount of space and our population is old so a lot of these facilities are full. So we have to wait. So at that point in time usually we will have a lot of hospice intervention going every day to the house. A lot of calls, a lot of sending CNAs, LPNs, RNs just to make sure that things don't fall apart before we get to that. Well we have to take a break and when we come back I want to talk about the conversation you have with the family and the next step once the person has been admitted. Okay? We'll be right back. Aloha. My name is Reg Baker and I'm the host of Business in Hawaii with Reg Baker. We broadcast live every Thursday at two o'clock. We highlight businesses and individuals that are successful in Hawaii and we learn their secrets to their success. I hope you can join us and listen in because we always have a pack of information on successful stories in Hawaii. Aloha. Aloha. I'm Kaui Lucas, host of Hawaii is my mainland every Friday here on Think Tech Hawaii. I also have a blog of the same day at kauilukas.com where you can see all of my past shows. Join me this Friday and every Friday at 3 p.m. Aloha. Aloha. We're back with our hospice nurse Marilyn Carter and I want to talk about the conversations that you have with the family, with the patient and you know what we see on the soaps is all of the confusion with the families and the upsets and whatnot. Is that real? Does that really happen? Yes. Yes. I would even like to back up before when I get there it's usually almost too late for some of these conversations because at that point I would love to have seen that they've already discussed all of this and normally most people have not and people are uncomfortable talking about what's going to happen when a loved one becomes sick or terminal. A lot of times when I get there the doctor suggested hospice and they went with it but they have no clue what hospice actually is, what we do, what to expect. I find a lot of times that the family even at that point is still uncomfortable. They're still uncomfortable talking about it, they're still uncomfortable with making certain decisions. So I would suggest that way before that point, before anyone is sick to talk about it, talk about it often, just one talk is not going to get it. I would suggest talking about it with everyone because I've been in a lot of situations where it was talked about a little with the son or daughter who lives here in Hawaii but the others that live in the mainland this has never been discussed with them. So when I actually get there and this sister or brother from California has flown in and they don't know anything about the parents wishes it's all about what they think at this point and then we have the issue with the siblings fighting, we have issue with mom losing control, dad's in the bed sick, dying and nobody knows what's going on. So when I get there I try to find out what they know about hospice. I try to discuss what's getting ready to happen and signs and symptoms of end of life. I discuss the medications that can be used. I try to find one person to be the spokesperson because we get into situations where I have one son or daughter with one set of instructions and another one coming in saying no no no that's not what mom would have wanted. So I try to pick one person stick to them. I've been in situations where I've had patients who are in pain. One of the daughters calls up do something about my mother she's in pain so we come over we want to give medication no we don't believe in that they actually don't believe in medication yes I've been told okay then what so that's what I I like okay so what is it that you need me to do at this point because this is what hospice does I've gone around and around and around with this person day after day after day the mother is in pain I actually had to call another sibling who said we didn't know this was going on and that's not mom's belief that's my sister's belief so you you really have to have everyone on the same page that's why I suggest talk about this way before so if it was in writing so that everybody knew would that help it helps but it doesn't prevent some of the chaos because again they call it the sister in california syndrome you have people here no mom has her advanced direct living will and they're following it sister comes swooping in from california saying oh no they haven't seen mom since she was yes okay so now they see her she's pale and she's incapacitated they freak out and then it's I know what's best for mom you guys aren't doing anything she would never be in this situation if you guys hadn't dropped the ball I'm taking over now excuse my language but to help with the advanced directive and go straight to the doctor and tell them this is not what we're doing doctors are afraid of getting sued so they'll back up and then you have all kind of things done to this person that was against their wishes and the family not wanting to fight and there's a lot of guilt am I doing the right thing by following mom's wishes and not giving her any treatment and it becomes a mess so that's what even with an advanced directive you still need to sit everyone down together to make sure yeah uh tell me now that you've got this the the question I have I have two questions hopefully we can get through one is terminal sedation what is terminal sedation I to be honest with you I am not sure of the legal definition but what do you think it is I would think that it's a way for a patient to be sedated so they're not in pain they're not suffering and that they can slowly not slowly but just being able to slowly pass without the the the restlessness the the fighting the there's a lot of physical issues that patients go through when they're dying that are not pretty so I'm not sure lately what the legal definition is you know I'm not sure the legal definition you know I'm calling it terminals that may not be this but when you give them morphine or whatever to keep giving them until they're comfortable yeah and then they and and eventually the if given enough morphine a patient's respiratory system will shut down and they will pass away and so it's not something that we're doing so that they pass away but a lot of people are in such pain they're just suffering and a lot of times we're we're giving this because the family can't take it the family can't watch I suggest a lot of times that the family tell the patient that they're they're okay and that it's okay for them to let go and I have found more often than not that takes a lot of the restlessness the pain the labored breathing usually comes down quite a bit when a family relaxes around the patient tells the patient it's okay because a lot of patients hang on because they do not feel comfortable dying I know that sounds crazy but they just don't because they see the tears the anguish the the suffering that the family is doing and actually this past week and I had two patients like that and as soon as I told them and the family told them that it's okay some hours later they let go and they passed so and that makes it a lot easier yes without and I've seen people who did not benefit from that and they're usually very restless and they're in pain and a lot of gurgling and labored breathing and trying to get out of bed even though they can't walk they're trying to sit up and they're trying to do things I believe because they feel like they have they have to take care of their family and that their family can't take this there's usually a lot of crying and with the family with the fat lot of crying and oh don't go don't leave us we're you know we you're the you're the rock in our family I don't know what to do so it's all about me not about the patient exactly and I mean I understand that you're of course you're going to miss this person you love this person you don't want this person to go but do you want them to continue on in the state that they're in and and I try to convey that to that right now this is his journey this is her journey you have to put your feelings aside and do what's best for the patient and a lot of times that's letting the patient know it's okay and most people that I have come across that can do that it's so much smoother in the end and the people that fight it it's it's usually very gut inching at that point it's usually really hard well you know I'm I'm proud of course but hospice nurses or hospice period is such a wonderful idea and we need to talk about it more because you know that's where most people are these days but I who's that anyway I'm honored that you feel that it's an honorable thing to be with people at the end and to help them make that journey I'm so proud of you and it's really thank you for being here thank you for being a nurse and I'm sure all of those families are pleased to have you and it's been a wonderful day thank you again and again for all of you that feel a moment take a moment to say a prayer for those people not only then one hospice but for all of our Marshallese neighbors who are caught up in this awful awful time thank you so much hello I'm Makako I'm Marsha Joyner and I'm inviting you to navigate the journey we are discussing the end of life options and we would really love to have you every Wednesday morning at 11 a.m right here