 This is Think Tech Hawaii. Community Matters here. Good morning. This is Craig Thomas, your host on Much More Medicine. Part of Think Tech Hawaii's live stream show. And with me today is Jeannette Kojain, ahead of Kokua Mau. And today we're assisted as usual by Rich and Ray, our engineers. Thank you both. So welcome. I'm really happy you're here. I've admired your organization for years. And you get to tell us about it. Great. Well, thank you so much for the invitation. And I really look forward to talking about Kokua Mau. It's obviously something that's very important to me. Kokua Mau is a network of organizations and individuals here in Hawaii that we'd like to say that we're leading a movement to improve care. So for us, the ideal is that people in our community get good care throughout their lives. And we especially focus on people with serious illness and people at the end of life. And so what we're hoping for is that people who are in that situation, they have good quality of life throughout their life. Their loved ones are supported. The professionals that take care of them are well trained. And that they can really have good quality of life throughout their life. So it's a fabulous organization. We're going on almost 20 years here in Hawaii. And like so many other things, a Huey works really well. That you bring people together to do more than we could by ourselves. So I'm very privileged to work with these folks. And it's a really fabulous group across the state. So I'm very glad that we get a chance to tell more people about the work that we do. You know, I'm really pleased you're doing it. Did you get into this in the first place? You know, for me this is actually, you know, people ask me that all the time. And I started, I think when I look back, my journey began when I lived in San Francisco at the end of the 80s, which was the AIDS crisis. That was a tough time. It was a very tough time. And I worked for a project called the AIDS Memorial Quilt. And our approach to the AIDS epidemic was to come with love and compassion and understanding to speak about the lives that we had lost and the people that were impacted by the epidemic. And when I look back at that time in San Francisco, everybody was involved with providing good care to people and to be supporting each other. And you know, meals on wheels was crucial. The doctors and nurses were crucial. SF General was crucial. And so were so many other services and just ordinary people in San Francisco. And that for me, together with my mother's death, my mother had a brain tumor. Oh, I'm sorry. Yeah, it was very surprising. You know, she was very healthy. She and I had taken a hike the day before and she had a seizure at work and was diagnosed with this brain tumor. And it was, as those of us that have gone through this of caring for a loved one know, there's not a clear roadmap. As the eldest daughter and somebody involved with healthcare, I was called in, of course, to help make decisions. And, you know, looking back, I feel like I made good decisions for my mom. Her voice was a part of the conversation. Her voice was represented both in the chemotherapy we tried and then when it was time to stop and to call in hospice, that we were able to care for her in such a way that she was well cared for throughout her life. We were supported. She was supported. I miss her all the time and it's been 22 years. But I can look back and say, you know, I did a good job. And I think that has led into what Kakuamao is. And I think we in Hawaii, we have such an opportunity and we're already working on building this community where people are well cared for. You know, we all do care about each other. We're all related to each other. We're all taking care of each other. You know, never talks, think about anybody. Because we're all connected. And I think that we, especially in this movement of Kakuamao, we just see if we can all work on this together, we really can care well for people. And that's really our vision. Is that this community is created, that in our community there's a good continuum of care where people are well cared for. And their loved ones and the professionals as well. So that the whole team is supported throughout the journey, which I'm not saying that it's easy. I'm just saying that at least there are things that we can be doing to support people. Well, to catch on the last thing you said, life isn't easy. I think you're right. I think Hawaii is our privilege to live here. And so honestly, so I've been an emergency doctor as sobering to think of for 36 years. I started at Oahu on 1983. Worked all over the state. And one of the fabulous things about working in Hawaii is people are connected. And people are nice to each other. And in general, the family and community support is much better than some other places I worked before I came here. That's fantastic. Having said that, I've also watched over time how things can play out well. And I'm really sorry to hear about your mom. I have to tell you from an ER docs point of view, your mom represents sort of a heartbreaking case because, and this happens to us, somebody comes in healthy in the middle of life and we make a deadly diagnosis. Completely life and family altering devastating diagnosis. And we have to sit down with somebody, we met an hour before and say, I have to tell you, I know why you had your seizure. And here's what it is. I'm not the oncologist, but this is a big deal. And now we have to figure out what to do. And every emergency doctor is faced with moments like that. It's not, we diagnose a significant amount of terminal disease. And it's very sobering. There's also, of course, other things that happen. There's trauma. There's, you know, the arc of life as we get older. Things that weren't an issue become an issue. Some of them can be treated. Some of them cannot. But I think it points out to what you were alluding to, namely the goal is good care throughout life. And our, we need to be prepared for the lightning strikes like your mom. And we need to have a cognizance of where we are sort of in the spectrum of life. And plan appropriately. So let's talk about that. Let's say I'm much younger than I am. We'll take off 50 years thereabouts. And I'm 18. What do I need? Okay. So, you know, what we want people to understand is that there are decisions and discussions that can happen early to help prevent this crisis, just like you said. So at 18, really everybody needs to figure out who their decision maker is. We call it a healthcare agent, healthcare power of attorney. You know, anybody can get hit on the head by a surfboard and you want to know who's there for you. I think you phrased it on your website as someone who can speak for you and you cannot speak. Exactly. Yep. And so that's, you know, that's the thing to be thinking about. Who would speak for me if I can't, who would speak for you if you can't speak for yourself? And then do they know what you want? Yes. And that's what's really important. And if we can get people doing it at 18, that's great. I'll be honest. Most people at 18 aren't thinking about that. So, you know... No, but some of their behaviors suggest they should be thinking about it. Suggest otherwise. Although when you talk to young people about car accidents, they kind of wake up as do their parents. So, if we can get conversations going early, that's really our goal. How do we start these conversations early? How do we break the ice? How do we get people talking? And we find that given the right venue here in Hawaii, people do like to talk story. They like to talk about... They may at the beginning say, oh my gosh, I can't think about this. But especially if they've gone through it themselves, whether it was the neighbor or grandma or a loved one, they do want to have that opportunity. So for us at Kukua Mau, we approach this in three different ways. So one thing we do is we try to help people who may be facing serious illness understand decisions they may need to make and then find good information and resources. Because we have a lot in our community. So we encourage... We have a website that has lots of good free information, it's emphasize free, to get the conversation going, understand about this. I mentioned advanced care planning, advanced directive, the document you can do for free to indicate who your person is. So we encourage people to go to the website, learn about the resources that are available. And the other important thing is our let's talk story program, which goes out to where people work, live, and pray to get conversations going. And this is over the last two years with the exponential leap in requests. We did, for instance, 38 talks in faith communities last year. People who can in a safe environment start discussing not just who, not just the form, but the conversations around it. When I look back at my mom, we knew what she wanted because she talked to us and we could carry that with us, especially after she wasn't able to speak for herself. So it's the conversations. The documents are important and the conversations are where this has to start. So we see over and over again, we got to start these conversations, do it early. In Kukua Mau, we have this Speaker's Bureau. We have 17 volunteers who are mostly professionals who do this as a job and then choose to go out to talk with people about this. So we really hope that people will, you know, hey, my Rotary Club needs a talk or oh, my church or my temple could do that. My mom's book club is always looking for speakers. We're there to try to get these conversations going. You know, the second thing we do is we're very people-centered. That's also very local, right? We want to talk to people. I don't want to just go online and hear about that. I want to talk to people and who are you? Oh, you're related to these people. Oh, okay. You took care of my mom? Great. The second thing is how do we help professionals? So we have a lot of training opportunities for professionals because this is not easy. So we want professionals to feel like they have places to go to hone their skills, up their game, get more comfortable with these important conversations. And the final thing we look at is policy. Like, can we, for instance, HMSA has really good policy around in-home palliative care. So does UHA, two health plans that deserve a shout-out because they're really trying to work on this continuum of care. Working with them, really, for us, makes a difference. And that's why inside of our movement we can work with long-term care. We can work with hospice, hospitals, all sorts of folks where we can try and get the policies in line so that the right thing to do is the easy thing to do. So for us, you know, it's a continuum. So start early with having these conversations. Learn about the resources. See what's out there. And so that, you know, when life happens, you can feel more prepared. It's never easy, but I can tell you it's so much better to at least have in place, okay, this is what mom wanted. This is who mom wanted to speak for her. Let's all be in this together as we try and honor this person who is so important to us. And how do we keep that going? And I will say also, you know, we're caring for our loved ones and we care for ourselves. And how do we make sure that we, as the, you know, we also can carry with us in good, in a good job and did what was right. Because the person impacted and the family both mattered. You know, after the break, we're going to explore the next steps, advance care directive for planning and as folks person that starts early in adulthood, but there are other phases as life goes on. So we'll rejoin you after the break. Again, this is Much More Medicine with our guest, Jeanette Kojain from Kukul Amal. This is Think Tech Hawaii, raising public awareness. It's choose to treat it with the help of a physical therapist. Physical therapists treat pain through movement and exercise. No warning labels required and you get to actively participate in your care. Choose to improve your health without the risks of opioids. Wendy Lo, and I'm coming to you every other Tuesday at 2 o'clock, live from Think Tech Hawaii, and on our show, we talk about taking your health back. And what does that mean? It means mind, body and soul. Anything you can do that makes your body healthier and happier is what we're going to be talking about. Whether it's spiritual health, mental health, fascia health, beautiful smile health, whatever it means, let's take healthy back. Hello. Welcome back. This is Craig Thomas, your host on Much More on Medicine, and with me is Jeanette Kojain. Excuse me. That was not good. Kojain from Kukul Amal. And before the break, we are talking about the importance of having something to speak for you when you cannot and to make your wishes clear and also have a written document of what you're looking for because life is full of good and bad things, and in the end, we all become more frail. So as an ER doc, we really love having resource to know what a person would want in a circumstance. And we usually don't. And it's all of our responsibility. I think the medical profession is bad at addressing our limitations, and our limitation is no one's going to live forever and we can't fix a lot of things. None of us want to admit that, but it's true. And people's limitation is similar. I'm going to live forever even though nobody else did. And besides that, I'm indestructible. And we need to get past that. And so I think that your focus on how to get the right care to maximize life's both health and satisfaction is key. So we talked about how you start when you're a young adult, a young healthy person, what happens as life goes on? Right. So as life goes on, it's really important to continue to think about who is it that's going to speak for me. Life happens. What's interesting in our work, as I said, we're out in the community talking with people. And a lot of people say, oh, you know, I did that already. It's in my will. It's in my trust. I did. So we have a two-session approach. And we say, okay, go home, get your advance directive, bring it back with me. I can't tell you the number of stories that people have. Like, oh my gosh, my ex-husband was my person. So I've changed that. Or, you know, I had two people and both of them have died. Yeah. Or, you know, so I think it's important to keep it as a living document. But it's also really important to think about the conversations around things like, how do you like to make decisions? Do you like lots of information? Not so much information. Are you, what is the role that you want your doctors to play? What do you want your loved ones to do? What do you do when your loved ones are confronted with making a decision that they think is right that may not have been what you run? So all of those kind of things come into the conversations we have with people. And one of the, you know, one of the good things that comes out of these conversations, not only do families get to talk and people get to break the ice, we get to tell people about the resources that are available. And I think there's a lot of misunderstanding around hospice and palliative care. Let's talk about both those things. Okay. So palliative care is a specialty that helps people have serious illness, but may still be doing curative treatments. And that addresses, in a team, a team approach, Dr. Nure's social work chaplain is the usual team. It helps the person and their loved ones to address the suffering they may be facing. So this could be the physical suffering, pain, shortness of breath, but it can also be the emotional, spiritual suffering. And that often is the most important thing and can cause very physical manifestations. So it's really important. Or even suicide. Cancer diagnosis is associated with suicide, for example. You know what's really interesting to me is 10 or 15 years ago, it was sort of viewed in the medical profession. We don't have a lot to be proud of here. Oh, you can have the full court press or you can have palliative care at the hospice. And that's, of course, a false choice. That's right. You can have appropriate care and palliative care. And at some stage, hospice. And interestingly, people actually do better physically in that circumstance, which kind of tells you we were doing the wrong stuff before. Yeah. So go ahead. You know, I think it's great for people to know about palliative care and to ask for a consult if you're in a hospital, look for the in-home palliative care, the one that I mentioned before, supportive care from HMSA or concurrent care from UHA. And I think it's really, in terms of hospice, I've never had anybody say, oh, I'm so sorry I called hospice. What they say is, I wish I'd called hospice earlier. And like palliative care, people are like, why didn't I get this before? Why did I need to be in hospice before I had a team to manage the situation, manage the meds, figure out what was going on, show up to take care of somebody well. And I think that that's, you know, why is it? It's really a, for me it's just such a huge gap that we have to wait until you're in palliative care or in hospice before you get medicine the way it's supposed to be. And I talked to doctors, nurses, social workers, who are like, this is why I went into this field, that we can take care of all of the suffering that the person has, as well as what their family's going through, their loved ones are going through, that you can look at, you know, how to support the family along this journey. And then of course, after somebody dies as well. So hospice totally underutilized benefit and often totally misunderstood that I, you know, I appreciate your help in getting the word out about how great it is. You know, we in medicine do a bad job with this, our sort of, our mission should be what you said, appropriate care throughout life, excellent care throughout life. Our mission generally is misinterpreted as prolonging life. That's not the same thing. And so we're bad at it and it's just like people don't want to fill out regular wills, no one wants to look forward but you need to plan for it. And just from my perspective in the ER, life would be a lot better for many people if these plans were in place. Interestingly, information alone is not enough because although doctors say, oh, I don't want whatever done. I don't want to open the ICU. And honestly, I think they don't. But they're not very good at putting their plans out there. And guess what? We end up in the ICU at the terminal event as much as anybody. And so we all need help with this. Right. Let's talk about hospice and then the new development. Legally, we should talk a little bit also. Sure, sure. So how does hospice work? So hospice is for someone who has a six month or less diagnosis and is for someone who's stopped curative treatments. So that's a difference with palliative care. Palliative care, you can still be, you know, so for instance, doing that last round of chemotherapy, but you can get the team that comes in. Hospice is a type of palliative care where they also have that team approach, but you're not doing any more curative treatments. Again, the emphasis, like you said, is on quality of life, support for the person, support for the family, and making sure that those symptoms and the suffering is managed as best as possible. Most people misunderstand hospice that it's a place to go to. The vast majority, 90 plus percent of hospice is at home. So you invite them into your home, you hire them to come in and work with the people that are there. So I think that that is very important. And for people who are suffering, you know, hospice can be there in two hours. Hospice can be on your couch this afternoon telling you what they can offer, how to enroll, all the major health, everybody covers it, so it's a covered benefit. And they can come in with that extra layer of support. And quite frankly, like you said, sometimes you do better because everybody gets to sleep. Somebody else is helping to manage what's going on. And you get this team support. Well, I wanted to weigh in on something you said, which you said, cessation of curative care. We are actually not talking curative care anymore when people go into hospice. We're talking at best, shall we say, temporizing care. And in fact, interestingly, patients tend to live longer in hospice than the same patients would getting that next round of chemotherapy or whatever it is to live longer. And they clearly live better. So people think this is a choice between something beneficial and something end of life. And what it really is, is a choice between more intervention that is highly unlikely to be beneficial and quite likely to be harmful and supportive care that actually does improve and can extend life. So it's not an either, it's not a, shall we say, zero-sum game. That's right. And it's not straightforward. If it was straightforward, you know this as an ER doc. It's, no, there are decisions to be made. And again, if we can put the people at the center like hospice and palliative care does and help support them along this journey to make sure that they're getting the best care possible, we say the right care at the right time in the right place, that's really the goal. And sometimes those conversations are not happening with the regular doctor. So kudos to my colleagues who are palliative care doctors or hospice professionals, because they actually are so good at having those difficult conversations that can really just make such a difference in terms of how people are cared for. There are really tough conversations to have at the moment of extraneous in the emergency department and we don't have any relationship up until that moment. So we're thrilled when this has occurred beforehand. There's a new law, which honestly I think has a small niche to play. I think it's important. People have ownership over their own health and lives, but I think that it's a small piece. Why don't you tell us about it? Yeah, so I would encourage people to go to our website. You can read about, it's called the Our Care, Our Choice Act. And there's a lot of information there. Also, the Department of Health has a good website. It's a complex topic and we're coming to the end of time. I would really encourage people, if people come and say, I want to know about this, first of all, figure out, is somebody in incredible pain or suffering right now, in which case call hospice immediately, look to your doctors, deal with that now. And if people want to know about it, there's good information out there to start that process, because it's a pretty complex topic. But we would really, for us, our goal is how do we care well for people? As you say, about maybe 40 people will ask for it. 10,000 people die every year and all of those people can be in hospice care. So it's really important that people understand about all the end-of-life options. Absolutely. Why don't you describe the resources available on your website? How do you can engage speakers or other resource? Because I agree. It's appropriate planning, appropriate discussion, sharing the load, so to speak, is key. Right. So it's kakoua.mau.org. And you can see on the website we have stuff on advanced care planning. So that talks about the advanced directives, again, free advanced directives, then also materials on getting the conversations started. We have a starter kit for that, questions around CPR, tube feeding, all those kind of things that come up that people need to be better informed about. We also have listings of palliative care providers here in the state where it's available, and then all the hospice providers are listed there. So there's a lot of good information. And again, my suggestion is for people, give us a call, schedule a talk. We're the ones who figure out how to broach this difficult subject, get things going, and we come in with the experts to try to, you know, to get the conversation going. So I really hope that people will contact us and we look forward to working with anybody. I hope they contact you too, and I really appreciate you coming today. Well, thank you. Thank you all. This is Jeanette Kojain from Kokua Mau, and thank you for joining us.