 Many of us now have advanced directives in place and now with COVID-19 and the possibility of recovery if we have a ventilator. Do we need to change those or have we signed our death warrant? I'm Larry Grimm. Welcome to my program Elderhood, Aging Gracefully. And today's theme is advanced directives in the time and the era of COVID-19. And I have the person on the island who is the go-to person for this topic and that is Hope Young. Hope Young is going to join us. Hi Hope. Hi Larry. For being a part of this program with me today. Thanks for having me. Elderhood, Aging Gracefully is about how to age gracefully into our elderhood and through our elderhood. And there's so many wonderful resources on this island, not the least of which is what you are going to bring to us today. And so first of all let me begin by asking you to introduce yourself to our viewers. Share a little bit about Kokua Mau. Sure. My name is Hope Young. I am the Advanced Care Planning Coordinator for Kokua Mau. We are a statewide nonprofit. We are supported by our members who see the work that we're doing out in the community and how important this work is. I have been with Kokua Mau since 2017 and I have the blessing to go out into the community pre-COVID and doing advanced care planning sessions with various organizations and groups and doing professional development so that our healthcare professionals are able to have these conversations well. And so we look at all things at the end of life and how to support people with serious illness, ways of supporting individuals out there in the community and we like to think of ourselves as leading a movement to improve care. Beautiful. Thank you so much for sharing that. But let's get right into it then, Hope. Sure. Has COVID-19 affected advanced directors? Are they worth anything now at this point? Has everything been shifted by COVID-19, including this real treasure of our medical system? Well, you know, COVID's changed a lot of things out there in the community. As I'm sure you all are well aware, we're doing things differently now. So COVID has changed many things. One of the things that we like to point out is that it has changed the way people are receiving care in facilities. So that's something to consider when you're thinking about serious illness and what you want and where you can get that care from. But as far as advanced directives go, we really, there's a need for more conversations. If you already have an advanced directive, I say pull it out, take a look at it and see if you're still comfortable with the instructions you're given. And consider that COVID has changed the way things are happening. So what we really encourage is for people to have these types of conversations with the agents, because the agents are the ones who's going to be in the decision making position should an individual wind up in the hospital for COVID. And that's something that we want to make sure that they know how to navigate the system on your behalf. What are you seeing happen? Are you seeing people modify their advanced directives because of COVID or how are they looking? So there are some addendums that people are using for their COVID for times of COVID. But what we really want people to do is have these conversations. You don't necessarily need to modify your advanced directive, but you want to make sure that your healthcare agent, your person, the person you've appointed as your power of attorney is well understood for what your wishes are, because there could be an incident where you find yourself in the hospital with COVID. Now, what does that mean? There is going to be choices to be made, right? Whether or not a ventilator would be helpful. And if you choose to use a ventilator, how long would you want them to have you intubated and ventilated? These conversations are really important because it helps your agent to make these decisions on your behalf, because people don't necessarily realize when you're on a ventilator, you actually are in a semi-commental state. So you don't have the option of being your own voice, talking out loud for yourself. So your agent is important to know what your wishes are. So it would seem to me that it's important to tie in your PCP and this conversation as well, along with your agent. Is that correct? Is that the advisable? You know, if you have concerns about COVID and you think you're in one of those high-risk groups, it is recommended to have a conversation with your PCP, ask them the challenging questions or maybe the questions that you're not too sure of, and ask what to expect, what kind of decisions your loved ones might need to make, and give yourself that opportunity to learn about treatment options. We would hope that nobody would ever have to get on that ventilator. Unfortunately, we do know that that is a reality, that some people wind up in that position. So if you're in one of those high-risk groups, I recommend or urge you to go ahead and talk to your doctor more about what to consider and how you can approach this better and how you can get your agent on board to make these conversations meaningful. That makes sense. Thanks. It seems to me that, well, let's say we have about a quarter of the Hawaii population that is over 65. And going over 65, along with comorbidities or previous, how do we say it, how do we say it, previous conditions that people bring to the, to this time of their life can make folks who are watching this really a very vulnerable population. So we're speaking to people who definitely need to listen to this. And you folks, if you have questions, please send questions to questions at pinktechhawaii.com and we'll bring them up on our, bring them up on our discussion for you so that we can answer what you've got. I'd kind of like to back up a little bit with you, Hope, just because advanced directives have been out there for us for quite a while. However, I'm still not convinced that everybody who needs them has an opportunity to know and understand what they're about. So let me tap your resource. So what we really want to promote is that every competent individual over the age of 18 should be doing an advanced directive. We're not looking at this as an elderly thing. We're not looking at this as a serious illness type of situation. We think it's just good planning. You never know when you could step off the street and get hit by a bus and be incapacitated. So we're really trying to encourage people to do this while they're healthy, have these conversations while they're well, because an advanced directive is really important. It's a two step document. The first step is naming your agent. Who's the person that you trust to step in if you're unable to speak for yourself, right? And so just having that person designated, it can be wonderful for the family to know that someone is already in charge. I have the fortunate, fortunate opportunity to work with volunteers, some nurses, some doctors, some social workers, and they can tell you stories about fistfights in the parking lot outside of the ER room, because people are not on board with each other. They want to support one another, but this is the way that they can do that. By having an advanced directive, you're giving them the directions so they don't have to kind of fight it out amongst themselves. What you really hope for is that during a time of crisis, the people who show up will know how to support you. And they can know how to do that by knowing who your agent is and what your wishes are. That's excellent. We had one question here. What's the youngest age would you recommend getting an advanced directive? You already said, what, 18? 18. You know, when you think about it, when you were 18, full of life, right? But you can see accidents happening, surfing accidents, hiking accidents, life happens. So we really recommend people to get that early. And if anything, just designating your agent. So the document is a two piece document. The first part is designating your agent. The second part is your end of life wishes. And so oftentimes, when you're young, you may not have an idea of what your end of life wishes might look like. So that's an opportunity to just name your agent. And that's, that's very important in itself. So if you're not quite ready to say what you would want at the end of life, name your agent is a good first step. Who gets copies of this document? Good question. So the agent would get a copy. Your PCP should get a copy. Hopefully your PCP has the EMR ability, and they're linked in with one of our health systems, so that they can make sure to share it with the hospitals. Are these legal documents binding? They are legal. And in order to make them legal, you either need a notary to notarize it, or two witnesses and the two witnesses cannot be providers in a facility. It cannot be the person you name as your agent. They must be over the age of 18. And one of the two people cannot have inheritance rights. So you can get witnesses or you can have it notarized, but you want to get that witnessed or notarized and have the copies sent into your PCP and given to your agent. So can we look at a copy of an advanced directive with you? I believe we have a slide. This is a free document that we have on our website. If you're doing any legal, doing your will or assets or anything like that, they might offer to include an advanced directive. I say save yourself 400 bucks and do it yourself. It's free to download the website is right there. And we encourage people to change it and update it as needed. So this is not a set in stone document. As life changes, what matters most to you could change as well. So you want to make sure it's up to date. You want to make sure the person you have chosen as your agent is still the person that you would want. Well, for sure, things are changing all the time, medically, nowadays. And you're a great asset for us to be listening to at this time to be able to realize if that's possible. So how is it structured? Now I have done one that's five wishes that has several different scenarios. So I read a scenario and I say, well, this is what I would want if my body is in this condition and and have that follow through taking care of now does this document that you just showed is from Hawaii? This is a Hawaii document. That's correct. Yes. Is it similar to them? How is it structured? So our document, if you're in a different state, I would recommend you Google it and see what documents come up for your state. Five wishes is a national health care directive. So you can use that in any state. So the nice thing about our directive is it's only three pages. So if you're making copies for other people, you're only making a few copies. Five wishes, I think it's like 12 pages, if I'm not mistaken. So there's it has valuable information. One suggestion is to take all the answers that you're providing on five wishes and condense it into your thoughts on your advanced directive, and it'll be shortened in that section. So there is a section in the advanced directive that asks the same kind of questions that five wishes asked about how you would want things to be or when you would want to stop treatment, what your wishes are and what matters most to you. That's excellent. Now you have a program and you've talked just a little bit about about having the conversation. Where do you make that available? How do you present that? You go around our community presenting that. So we have partnered with a national organization, it's called the Conversation Project. You can find their information on our website. They have what's called the starter kit. And it's a nice, nice activity that gives you the opportunity to think about what you would want and what's most important to you. It's only nine questions. I call it a relationship builder. It really helps families to come together in order to support one another during a time of crisis. Your answers when you're healthy might be very different than when you're faced with an illness. So it's something that you can come back to and work through as life goes on. I have a classmate, her sister was a nurse and was diagnosed with stage 4 cancer. As a nurse, she knew what she wanted. And the family just couldn't understand why she was making the choices she was making. So my friend asked me, what can I do about this? And I had her do the starter kit with the family. And she said that was the best two hour conversation that our family has had in the last six months. So I think these conversations really need to be had. They really need to be done well. And it's an opportunity to learn from each other. Excellent. Excellent. Well, here's another question that's come in. Excuse me, I just wanted to go back and reaffirm anything that helps people have a conversation around this issue is really a treasure. Thank you for doing that. Now a question has come in. Could you tell us what is a worst case scenario of someone who's not had an advanced directive? Nice question. Okay, so remember those fist fights outside of the ER. There are fist fights in the ICU, because people don't have their advanced directive done. One of the one of the things to keep in mind is because it's a two part document, it's very helpful for providers, but it's also helpful for the family. So by saying I've designated my cousin to be my agent, and I'm telling you all my tribe, the people who would show up for me, she's in charge. That takes the whole who's in charge question out of it. And that really allows for loved ones to be there in support of their loved ones. Just that who's in charge can be a problem if it's not been designated. What happens here in the state of what is there's no next of kin rule. So just because you're married, just because you have children, or just because you have siblings, it doesn't automatically go to them. What they do here in Hawaii is they call a hui, a meeting of interested persons, where anyone family or not is invited to come and figure out who's in charge. Now, I don't know about your family, but in my family, the loudest person usually wins. And that doesn't necessarily mean that person knows what I would want. So really, you want to have that opportunity to take that out of it, take that whole unknown out of it by just naming that person. I don't I don't know the state trail for following who's who's responsible next of kin is responsible. Is this complicated? I mean, does does advanced directive clarify things for gay couples, for instance, for same gender couples? Absolutely. If you have your advanced directive and you're naming your partner, that gives authority to your partner, whether whether you're married or not, that gives the authority to the partner versus the family stepping in and taking control. And that's of course, if you're if you're had these conversations, and you're able to have these conversations and are on the same page. Sometimes you might find that a spouse might not be the person that's in the best place to be making life ending the end of life decisions. You may want them to just be able to be there. You also have people who just won't follow your direction, which is why you want to make sure that the person you chose, or you choose on your advanced directive is in agreement and understands that they're they're your champion. Being your agent is being your champion. And that means advocating for you, asking hard questions, probably making some tough decisions as well. But all that with you in mind. That's well stated. Thank you. So here's another question that's come up. Many people have fought for many years for for the legislation, which is called our care, our choice, the opportunity to make a decision about my own end of life, as I want it to happen. How does that come into play with advanced directive? So you wouldn't write that in your advanced directive, because that that's actually a personal decision that you would have to make at the time. For the our care, our choice, it has to be someone with sound mind. You have to have a prognosis of six months or less to live. There are certain steps that need to be taken in order for it to be actually prescribed. So if if that is something that you're interested in learning more about, our suggestion is to call call your provider and have a conversation about that. Because you want to know as much as possible ahead of time so that you can make good decisions on your own behalf. Excellent. Excellent. There is another document I'm aware of that's called abbreviated post P O L S T. Correct. Document. So a post is a standing medical order. It is meant for people with serious illness. People with you wouldn't be surprised if they were to die within the next year. So, you know, they might be healthy, but at age 98, you wouldn't be surprised, right? So this is for individuals who have had a conversation. They have some sort of serious illness. And what they have is a green form. Some of you may have seen the bright green form. Often times. Can we bring that up on the screen? Do we have it on the slides? I don't know. Yeah, there you go. The bright green form. Some of you may may have seen the green form on on loved ones, refrigerators, maybe taped to the wall. That form is filled out with a provider, either a nurse practitioner or a doctor. So that is a standing medical order versus the advanced directive, which is a legal document. So the post carries more weight. It is what first responders are able to look at and take action on your advanced directive while it's valuable. If you're in the middle of a crisis and you hand that to the the EMTs, they'll say thank you and they'll take them along. So the post is an actionable order. So that's why it's green and bright green and can be seen across the kitchen. Yes, on your refrigerator. Make sure it's there, huh? Yes. Right. Right. How else? How can you tell us a story? What story can you tell us about people who have had this conversation that you have enabled to do that and group process somewhere or give us an example of how you have promoted this having the conversation and enable people to do it. So with what we do in the community, pre COVID, now we're doing it all digitally. But pre COVID, I go out into the community and meet with churches, ladies groups, senior clubs, whomever wants to have these conversations, and we do it in a two step process because it's it's a lot to take into consideration, especially if this is a new topic, right? So we do the first session where we have a talk story session, we go through the conversation starter kit. We have a lot of discussion and kind of talk story, breaking the ice, getting people comfortable with the idea of talking about end of life, because that can be kind of scary, right? And then our second session, we come back and we do the advanced directive piece. We talk about the documents and how the two documents can support people through serious illness and through the end of life. We want to make sure people recognize that this is not about dying. This is about living well, all the way up until death. And how do we ensure that that happens for you? And this is one part of it that we can ensure that we can follow your wishes by knowing what they are. Very good, very good. I know I'm a I am a chaplain and I've been working in Bristol hospice here on the island for three years, but then in Houston, Denver, Colorado before that for chaplaincy work. And one of the things that I have seen calm families down is the question, what does she or he want to be done? What does your loved one want to be done? And that kind of deflates all that. You know, anxiety about how am I going to make this decision? And do I have to do this? And even when even when the family member can say we had this conversation, and this is what he said to me about the end of life, that that takes it away. So I really, really want to affirm for our listeners the power of this conversation. And this this tool to enable it is really wonderful. Was that up on the screen earlier just with the other? No, actually, it's on our website. So if you go to our website, under the advanced directives and advanced care planning, it'll have a link to a downloadable version, which you can do. The conversation project, if you put search them, they have other tool kits that are available. So they have other. They have a conversation toolkit for how to talk to your doctor, how to choose an agent and how to be an agent. How to have this conversation with people who have dementia or other Alzheimer related diseases. It easily has how to have this conversation with children who are facing serious illness. So as I said, they're one of our partners that we partner with. They're funded through the Institute for Healthcare Improvement over on the east coast. But they've got some really great resources that we link to on our website, or you can go directly to theirs. Thank you. I found going through the going through the steps of having the conversation just on my own was really helpful to clarify some of my own thoughts and and preferences. So so it's a great tool for family communication or formal communications within the community. As a chaplain and pastor, I also recognize, as you said, there is a basic resistance to talking about death and dying to even thinking about death and dying. So this is a wonderful tool to actually deepen life, as well as deepen relationships within your family talking about about this really very intimate and important moment in our life and living up into it. I totally agree. I also find that humor brings levity sometimes. And I like to remind all the viewers, the mentality rate is still at 100%. No one gets out of here alive. So this is why these are really important. I mean, you know, it might be hard to start. But once you get started, it's it's not as hard to have the conversations. That's it. Thank you so much. Well, is there a final word about COVID-19 and advanced directives and anything that you would like to leave us with as we come into the last two minutes of our show? Well, I really hope that everyone finds good health and does not have to worry about COVID. But I do encourage you if you have concerns because you are one of those that could have some additional problems because of your own health concerns, have that conversation with your doctor, have them talk about it. Ask them what it would look like if you got it. And you know, what are what are your concerns if you were to get it? It's really a good conversation to be had, but it's also good to have it with your agent so that they know how to support you should it happen. And I'd like to tag on to that hope not that it that was a really good important message. I'd like to tag on to that also that as anxiety ridden as we are these days with conversations about the virus and its impact on us, one of the ways just of dealing with the anxiety is to have the conversation. Absolutely. Around advanced directives and lowers the level of anxiety for everybody cannot tell you how grateful I am for this hope. Thank you so much. Thank you for having me, Larry. You're welcome. And if I may say, go to coquamal.org and take a look around and enjoy those resources. Even if you live somewhere else in the world and are watching this, you could still benefit from all that they have there. And I also would invite you back to elderhood aging gracefully every two weeks here on Tuesday at 12 o'clock with Think Tech Hawaii. And we're right in the middle and Think Tech Hawaii.com of receiving your donations of support. And thanks for these wonderful shows. Thanks for being a part of this show. Aloha and create your advanced directly now.