 And hello, Representative McFawn. Welcome. Representative McFawn, we have two guests from UVM here. Wonderful. So if you could introduce yourself. My name is Frances Matthew James. Nick name is Topper McFawn. And the fact that today is St. Patrick's Day has nothing to do with your introduction. No, and I have my costume in the other room. Now, we have two other people in the room who are really essential to us doing our work. And they actually make us look good and they, they, no, they do. And one does many things besides keeping us organized and also taking care of us is. Hi, I'm Julie Topper. I'm the committee assistant. And so she schedules witnesses. She feeds us. I'm sorry, I saw that I bet that's so different, isn't it? Unlike students, you have good ideas and then you have to put them on paper and write them so they're clear. We have good ideas, we think we rely on. Okay, so I think that is right now the folks who are around around the table my guess is our carpoolers from Franklin County are running a bit late and they will come in. Cindy, welcome. Hello, were you here I hope for the introduction of folks around the table, not for the folks around the table I was not. Okay, okay. The new folks. Teresa Wood. Taylor small I represent when you see in Burlington. Nice to meet you. I'm right there. Nice to meet you. Nice to meet you. And these three are the newbies. Oh, Kelly. London very Western strategy. Morning Dan noise. We'll get Hyde Park Johnson and Belvedere. I'm Cindy Brzezi. I am the executive director and clinical ethicist at the Vermont ethics network. And I also work part time as an ethicist at UVM medical center. And I chair the ethics committee for Dale, the Department of Disabilities, aging and independent living so when individuals who have developmental disabilities, who are under public guardianship are approaching end of life. There is a requirement that statutory that they come that their guardian come before the Dale ethics committee to have a review of sort of what's going on with the individual medically and what the recommendations are before they can consent to the individual. And then we would be able to withhold certain types of treatment that typically would be used if someone was dying or approaching end of life to prevent that from happening. So those are the, and I direct the statewide task force for palliative care. So I wear a multitude of hats. And I appreciate very much being here today to chat with you about. What's been going on and sort of I guess for those of you who are new kind of the history of how we got here around. I think was driven very much by this committee and the Senate Health Committee over the years when you updated the Advanced Directive Statute back in 2005. So- What's an Advanced Directive? Because I knew you were gonna ask me that question. And also because I know that it would not be a true visit from someone from the ethics network unless I brought you actual Advanced Directives. I have come armed with forms just in case you haven't completed your own Advanced Directive or you know someone who you think needs to complete one which is anyone over the age of 18. I've brought you forms. So Advanced Directive, oh. You'll turn on. Great. This is where the chair usually takes a poll. That's right. I know Dan was looking at you just like you're doing it. How many of us have our Advanced Directives? Okay. Not a chair. You just raised your hand. No, I didn't. I like to be able to, you know, not influence people. I raised my hand. All right. So I would also like to say I absolutely support the honesty that you all have since truth telling is the near absolute in medical ethics. So I appreciate everyone's honesty and full disclosure that you may or may not have a document. So Advanced Directives are tools that we have to plan for a time in the future when we may not be able to make decisions for ourselves. That's probably the simplest way to put it. These tools reflect the federal law and the Federal Patient Self-Determination Act that was passed back in the late 90s. And Vermont has done a really good job of creating and updating your own laws to make sure that we are doing a good job of supporting and promoting people to be self-determining. That is to be able to make decisions about what will and will not be done to their bodies. Now he's got his costume. The screen really needs to be that way to some degree. But for those of us, or yeah, over there. On the camera. Oh, there you go. So a large part of my work at the ethics network is doing education and supporting both individuals in the communities, as well as all of our health care providers and health care facilities in making sure that they are a promoting people to complete advanced directives and supporting them in doing so. They are looking in medical records and asking people if they have these documents in advance. So that should something unexpected happen, they know what matters to this individual and making sure that we have good systems to make sure that we can find documents when we need them. So that's a big piece of the work that I do. Advanced directives in general allow a person to do two things. They can name a decision maker so they can decide in advance if something happens to me and I'm not able to speak for myself when it comes to my medical care. I have named this individual to be my decision maker. That person is called a health care agent. We used to call them durable powers of attorney for health care. Some states call them health care proxies. It's the same thing. It's who is authorized legally to make decisions in the event that a person can't do it for themselves. And I think it's important to recognize that I think advanced care planning was born and this whole idea of planning for these kinds of situations, it grew out of end of life concerns and really the three landmark cases that drove it or Karen Ann Quinlan and Nancy Cousin, those are the two big ones. And then more recently, Terry Shibow down in Florida, which was in the early 2000s, which is when we all in Vermont updated our Advanced Directive Laws. Those were young women all in their 20s, but for a catastrophic event would not have probably been approaching end of life or been in a state where they couldn't make decisions for themselves. But we now know that clearly we knew then, but we now know even more so that sudden accident and illness can happen to anyone at any time. You don't have to be old. You don't have to have a terminal diagnosis. You don't even have to have a poor baseline health. Anything can happen at any time that would leave you in a situation where you're unable to speak for yourself. And in Vermont, this is where we're unique. We're unique in many ways that we're very unique in this way. Is it's not automatically your next of kin that will make decisions for you if you can't do it for yourself? It doesn't mean that we don't look to those people in the hospital. We clearly do. It's just that our law is silent when it comes to this for general types of health care decisions. We have a few little carve-outs which I can talk about later for when we would look to certain individuals, but by and large, it's just unclear. And so that makes it even more important that we think about at least naming a decision maker as soon as an individual turns 18, because it's not going to be automatically their parents that will make their decisions for them. So with that in mind, I've come with paper. But you can do it all online. I have a quick question. Sure. So I understand what you're saying about it here. I've seen it's not automatically your parents, but if you're married, is it automatically your spouse? No. Vermont has no default hierarchy, and that's kind of what you're referring to. Most states do. Most states, it says, if in the event a person can't make decisions for themselves and they haven't done what I've passed around named a health care agent, or they don't have a medical guardian, which even fewer people have those that are court appointed, then it will automatically default to next of kin in some order priority and generally its spouse, and then some family member siblings, however it goes, in each state is different. There's only two states that have no laws at all about this, and there's only four states who are like us, which have a law, but it only addresses certain types of decisions, and it does not give a hierarchy at all. It's based on who knows the person best, and that may not be their family member. That may not be, it may be a neighbor. It may be a work colleague. It could be a friend. So we have much more latitude, and ethically, I would say that's a good thing, because really what we're trying to get at when someone can't speak for themselves, what we're trying to know is what would they say if they could speak for themselves? So we're looking for somebody who really knows them and can speak with that kind of knowledge about if they were in this situation, they could tell us what matters most, what would they say? That's what we're looking for. That doesn't mean a spouse may not have any clue. Maybe they've never even had a conversation, because I had all my conversations with my sister, not my husband. And so it gives us in a clinical setting, like when I'm wearing my ethicist hat at bedside in the hospital, it gives me more latitude to look at this group of people that clearly cares about this individual who can't speak for themselves and try to figure out who among you can tell me what do you think this person would say if they were able? What would they think about this situation? What have they said in the past that gives you reason to believe that they would want this or not want that? And that's how we go about making the decision. It takes time for sure. And a hierarchy is quick. You just say, OK, who are you? Spouse, yep, you're it. You're good to make decisions. And that's great from an expedient standpoint, but it may not get us to the best answer in terms of what that person values. And that ultimately is the goal. Any other questions about agents? The other thing you can do in advanced directives, aside from naming a decision maker, is you can talk about what matters. You can give information about things that you would find acceptable, situations that you would find unacceptable. What makes life worth living to you? These are all very individual, value-driven kinds of decisions. There's no wrong answer. What's right for the person or wrong for that individual based on their worldview and their values. So there are documents that are a little bit longer than the one that I just handed out, which, of course, I brought you, that allow you to speak more not just about the who, but also about the what, what matters. And this is probably where we start to get more into end-of-life decision making. This is more about where people have the opportunity to say, gee, I've been hospitalized three times in the last year, and I had to spend some time on one of those breathing machines. And you know what? I don't think I want to do that again. Or maybe they say, you know what? It wasn't that bad. And if this happens to me again, yeah, I'm totally open to having those kinds of intensive care like therapies provided in the hopes that my health can be restored and I can be back to doing the things I want to do. So this is a way for people at a time when we can't ask them to give us some insight into how do you feel about these kinds of things? How open are you to making some trade-offs? Because everything in health care, frankly, is a trade-off. You're trading off something now, which is usually your ability to be home, to be in the hospital, to have stuff done for you in the hopes that whatever we do will give you more time later. And people have a different benchmark for themselves as to what trade-offs they are and are not willing to make. And we know that those trade-offs change as people age, as they develop new diagnoses, as their circle of friends and family changes, right? They have different values as they move along in their life. And so the whole idea of planning for these kinds of things is that it's a process and that we want people to revisit it. It's not a one-and-done. You don't just do it and be like, oh, I don't think about this again for the rest of my life. Actually, we really want you to think about it periodically over the span of your lifetime, because we wanna make sure that we have the most current reflection of your values and we have the right people that you want us to be talking to in the event that something unexpected should happen or in the event that something we know about is going to happen, we're all operating from kind of the same playbook in terms of what we should be doing and what we should avoid doing, because some people have really strong opinions about that. And the default in our healthcare system is we do things. I work with healthcare providers every day and they have lots of tools and they like to use them. And they're always like, hey, I think we can fix this. Hey, we can fix that. And sometimes that's good and sometimes that's not so good because just because you can fix this one little thing may mean that it doesn't change anything about this person's prognosis. And in fact, you may add a lot of burden to what they're already living with and we need to be careful about that. And we let people choose, by and large, we let people make decisions for themselves about what they want and what they don't want. I will say that that concept of self-determination autonomy, which was referred to that a lot in ethics, it's not absolute though. It doesn't mean you can always demand things and the healthcare system must provide. There are circumstances where they can say no, even if it's something that you want, even if it's that end of life, because they as healthcare providers also have obligations not to harm people knowing that there's no benefit that will be had at the other end. So that becomes part of the role that in the hat that I wear from an ethics perspective is when we start to bump up against those kinds of tensions where people are asking for things that won't work. And then we've got this obligation to do what people say because that's what self-determination is all about. But we also have this other obligation that says can't harm people for no reason. So that's the other piece of advanced directives and advanced care planning. So I just wanna separate out those two things. The planning is all about thinking about it, having conversations with friends and family about these kinds of topics, completing documents. And then the directive itself is the tool. It's the document that becomes a legal document once it's signed and witnessed and then is used to guide decision-making. And we're only looking at this document if we can't talk to the patient. We're not looking at this as long as the person's able to communicate with us and tell us what they'd like to do. So even if I have something in my document that says I wouldn't want certain things, if I show up at the hospital and can talk to them, I can say, yeah, I know I wrote that in my document, but no, now's not the time. I want everything we've got. And we saw this a lot during COVID at the beginning of the pandemic. We had an absolute influx and it was quite wild actually of people making changes to their advanced directives because they suddenly were like, wait a minute. I know I said I didn't want these things, but I thought that was gonna be a long time off in the future. Hey, if I get COVID, yes, I want to go to the ICU. Yes, I want a ventilator if it's required. And so a lot of people were making quick changes to their advanced directives to make sure that people knew because once we put a tube down we're not talking to them anymore, right? And so we need to be able to know who to look to and also what should we be doing in this situation? So a lot of people spent a lot of time making quick changes to their advanced directives during the pandemic and continue to do so in order to make sure that there's an accurate reflection of what their values are right now. So the only other tool that we have from a decision-making standpoint does it have any questions about advanced directives themselves, filling out these documents, what you can say, what you can't say? Sure. I was working on some will and stuff like the lawyer who I worked with knew all about it. She's like, oh, let's just do this right now. So you've done some good outreach. Didn't need it was like part of her checklist. Yeah, so we work, like I said, we work with healthcare providers, but we work with attorneys as well. There's many attorneys who work in elder law estate planning and they are doing these kinds of things as well with their clients. And they're not necessarily using the forms that I just handed out. Most healthcare facilities do use the forms that I handed out, but in Vermont you can use any form you want. And so many attorneys make up their own forms. Other places have their own tool that they use. There are some modifications for people with developmental disability who are still their own guardian to make them more accessible. When the other thing we're doing this year, and we just, I'm really pleased as we're translating these forms, the two forms that I just sent around into 12 different languages. It's in process right now so that we will be able to make these documents accessible to people who do not speak English. So they'll be bilingual forms. They'll have the translated language in bold and then in very small font underneath the English translation. So since most of our healthcare providers are English speaking, we wanna make sure that they are able to know which questions have been answered and what those questions are. So I'm pretty excited about that. Representative McFawn. Thanks Madam Chair. And happy St. Patrick's Day to everybody. My wife and I, we did this through our estate planning. And you just talked about that. Now I'm wondering, we did it through the doctor too, our primary care doctor. And how do I check? If I'm in the hospital and the doctor wants to know where it is, we have a copy of it in the safe too. But the bottom line is this, what I'm trying to figure out, how do I check to make sure my, our advanced directors and all of the things about who's gonna make the health decisions? I mean, we've sat down with the kids and all those decisions were made together and we wrote them out. But how do I check to make sure they get to the right place? Great question. So one of the aspects of advanced care providers so one of the aspects of advanced care planning and completing these documents is what do you do with it once you've done it, right? Where does it go? So you should make copies and give it to people that you obviously you should give copies to your kids or your healthcare decision. Certainly the person who's serving as your healthcare agent should give a copy to them. And any other family members who you think are likely or friends who are likely to be gathered around cause it's really helpful in minimizing conflict. I can't tell you how often I get called at the hospital because there's a conflict amongst family members even when there's already a decision maker. Sometimes people are fighting because they wanna be the decision maker and their loved one named someone else. And now we have to sort that whole mess out. But what I would say is the other thing you can do Representative McFawn is make sure that you've given copies to the hospital where you're most likely to receive your care. And also it should be registered with the Vermont Advanced Directive Registry. And I brought, I knew you were wondering information about the registry as well. Vermont is, oh, go ahead. What you said a few minutes ago, I think is important for us to take note which is when you're in a sort of critical situation people are trying to fix things. And I just from personal experience know that we had done all of what you just said the hospital had it, the doctor had it, it was registered. And still in the emergency room they were trying to fix things and they didn't even ask the question about that. And we brought it up and said, have you looked at my mother's directive? And then all of a sudden everything changed. I mean, they went, they found it. And so I'm just making sure that people around you who you think are going to be around you know what you have done is really important and that they bring that up. Because in the heat of the moment it is not necessarily going to happen in a situation. Yeah, and that's where, and I appreciate you for sharing your story. I will say that that's not the first time I've heard that. And so I know that I continue to have work to do in terms of trying to like embed this into the workflow. And one thing we've realized is that especially in the emergency department just like 911 they're very, time is of the essence. They have to move quickly especially if they're trying to restore health. There's not often a lot of time. And so these things have to become just kind of hardwired into the workflow so that we're sure that people are checking and that's ongoing education and work that we're doing across the, certainly across the state. And I think it's great. I mean, that's exactly what needs to happen is we need it to be in both places. We need the public and the patients to be able to say, have you checked? There's a document or here it is, right? When you show up. And we also need the healthcare system to have workflows embedded that do the same thing. So some, so hopefully between those two things we get to where we need to be as quickly as possible. I chopper see your hand is still is up. Do you have another question? No, no, that's good. Thanks. Okay, just to just to close that loop. The hospitals are required to check the advanced directive registry to see if there is a document. And so every hospital in Vermont and it only applies to Vermont. So if you go to Dartmouth they're not gonna necessarily check the registry they're not a Vermont hospital even though they care for many Vermonters but they will call my office and say, people think this person has an advanced directive can you check for me and we will. But this registry, it's a secure online database and it's a scanned copy of the person's document that lives there. And so when there should be systems built into every hospital in the ED is one place where people come in where they check the registry if the person lacks capacity. So again, the person can make their own decisions and they're talking to us. We're not looking. It's only when they don't have the capacity to make decisions that we're checking. So you can imagine people can come into the ED and be talking to us one minute and then very quickly not be talking to us. And so that's part of the challenge I think in checking but they should be checking the registry. So to your question representative McFawn they should be able to look in either your electronic medical record if you've given them a copy and or checking the registry to make sure they've got the most current copy because the most recent copy is what will guide the care plan, not older documents. The newest document is the one that we will be looking to. I just, I have to run to give testimony but I just wanted to give a shout out to the SASH coordinators at the various older Vermont communities that are amazing at getting the word out working with the residents of the facilities and the residential places to get as many people as possible. So I appreciate the education and the outreach that has been done to get more especially older Vermonters to have a document. My mom was convinced we kept telling her that she wouldn't do it until the SASH coordinator talked to her and she was like, okay, I'll do it. So. Yeah, sometimes people need to hear it more than once. That's right. That's right. Who has access to the secure registry? How do you get healthcare providers on the healthcare facilities? And only in the state of Vermont? Well, I mean, if Dartmouth wanted to have access to the, they could, they could go through an approval process to the Department of Health to become an authorized user. They just haven't sought that out mostly because they probably are like, they have enough to do then they're not gonna be checking the registry for Vermont patients. Sometimes they may not even know if it's a Vermont patient when they come through the door. New Hampshire doesn't have a registry. So it's not something they normally would be doing for New Hampshire patients. But they do have the ability to call just you or other people. They could call the Department of Health. They could call, they tend to call me because I work a lot with Dartmouth. And so they tend to call me but a lot of times people coming with their documents and a lot of times people give their documents to Dartmouth already and it's already in the Dartmouth medical record. It's already there. But they- That's probably where I would end up if I was in a situation. So just wonder it. And that's, yeah, and a friend, right? Yeah, and that's true for largely the Southern part of I-91. I mean, that's the quick, the closest referral. There are some patients from the Bennington area that would go to Albany. And I don't think I've ever gotten a call from Albany. But in general, that's kind of, there's UVM, if you're going to a higher level of care where there's more expertise and more specialists, it's either Dartmouth, Albany, or UVM. But out of state places have a way of accessing information if someone's not bringing it or it's not in their medical record. It's just not, they're not able to go directly to the registry without taking steps to- They could go directly to the registry because once you're registered, you get a wallet ID card. And on your ID card, it has the information for how to log in using your individual access code and find your document. Interesting. So they would have to, I mean, it's gonna take a little while that they would need to find the card. And then it says Vermont Advanced Directive Registry and it tells you exactly the ID number for this person and how to access the registry. And it gives you a phone number too. So they could call directly to the registry and say, hey, this patient just came into our EG. We found this card. It says they have a document. We need to see that document. And the registry is available 24 seven to respond to those healthcare provider calls who are seeking documents for people who have come into the hospital. So that's the other way that, and that card travels. So as you're traveling around with you and something happens, as long as people know they can present that card even if they don't have the document. And then it would be accessible to that wherever you are. So if you're in, you know, North Carolina. Interesting. Thank you. I'm sorry. As you're talking, I'm going an entrepreneurial thing to like medallor bracelets to add somehow, add this to it or something like that, this information that you're talking about in terms of access. So we have the ability to use medical or bracelets but not for advanced directives. We use them for medical orders. So the other tool in our sort of advanced care planning list, we have advanced directives and the registry and advanced directives. These are really preference based documents. That's what they, that's what they are. They were asking people, tell us what matters to you. Tell us what matters to you and who you want to make decisions for you. And we'll do our best to fulfill what it is you're looking for, right? If you don't need a doctor to fill them out, you just need yourself and, you know, the people that you care about to know what's going on and people who can sign, who can witness your signature. There are certain decisions that require a medical professional to have an informed consent conversation with you about. And those kinds of interventions are things like CPR, intubation, when we get to a point, feeding tubes, artificial nutrition and hydration. When we get to a point where we're worried perhaps that someone may have less time than we would hope or their terminal illness is getting to the end stage, you want to make sure we're not burdening them with interventions that may not offer them a lot on the benefit side, even though it may prolong their life, right? They may stay alive longer, even though they may not be engaging with people. And also we want to make sure that if someone's heart stops, we're respecting what it is they would like us to do when that happens. CPR is one of those treatments that you don't have to consent for. We just assume everyone wants it if their heart stops. That's like the default. Most things you have to consent for. Can we try your blood? We're gonna take your blood for, I mean, they do everything they ask you and you say yes or you say no and then they proceed accordingly. CPR, obviously you can't say yes or no in the moment. If your heart is stopped and you're not breathing, you're not saying anything. So the assumption is everybody wants us to try. And so it's called implied consent. We just, it's implied, it's the emergent and we're gonna do it. Some people would not want that to happen. And so in order to make sure that that doesn't happen to you if you're one of those people who doesn't want that intervention provided, you need to have an informed consent conversation. And by that, I mean, you need to talk with a physician, a nurse practitioner or a PA, physician's assistant, so that they can review with you what this intervention is, what it does, what the benefits are of it, what the harms are associated with it because it certainly isn't benign. I mean, nothing that we do in medicine is benign. And to make sure if you say, no, I don't want that, that you're making an informed choice. You're not basing your decision on what you saw in the latest episode of Grey's Anatomy or some other TV program, right? You're basing your decision based on accurate medical information that takes into account your health and what that physician can tell you or that clinician can tell you about what this intervention would look like for you. How likely is it to work? What would it look like afterwards? Would you even be able to get back home afterwards or maybe you'd always have to live in a long-term care setting which is maybe something you don't want? I mean, these are all, so we wanna make sure people really understand. And so in order to do that, we have another form. And this can be done electronically as well, but we have a paper order. It's called DNR-COLS. It stands for Do Not Resuscitate and Clinician Order for Life Sustaining Treatment. So this is not something that an individual fills out for themselves like you would in Advanced Directive. This is an actual shared decision-making conversation with your healthcare provider where you're talking through your goals and values and these specific types of interventions and coming to some agreement around should we do this or should we avoid doing this? This is the tool that first responders are looking for. 911, when they get called to a scene and they find a person unresponsive, they wanna know if there's one of these because otherwise they're gonna do everything they can to rescue you. If they find one of these, they are obligated to respect it and honor it the way it's, cause it's a medical order. It's not just what I think. It's what I've had an informed discussion about with my clinician and we've decided that we are not gonna do certain things. And so this paper order, you can imagine it's not very practical to carry this around with you everywhere you go if you're one of those people who doesn't want certain interventions. So we have a system in Vermont now where once one of these is completed, it can be sent to one of two vendors, a medical alert is one vendor. The other vendor is something called Sticky J, which is a very odd name, but that's who they are. And they can provide you with a bracelet, a necklace or an anklet. Although I don't know anyone's ever gotten an anklet, but necklace or bracelet that says Vermont DNR on it. And so that bracelet serves the same purpose as if you were carrying this order with you and presented it to the first responder. Saying that if you're still responsive, but you can have one of these orders and be responsive and still go to the hospital. And you fell and broke your hip just because I have a DNR order doesn't mean I don't want my hip fixed or my ankle prepared or my wrist because I took a fall. It just means if I have died and I have no pulse and I'm not breathing, please allow me a natural death. Don't do things to me at this point in my life. I don't want that. So these are really useful tools for some people who have very strong views that there are certain interventions they absolutely do not want. And this is what, and these are binding not just on first responders, but on healthcare providers as well. And they're intended to be portable to move with the person as they travel about their life, whether they're at home and then they go to the hospital and then maybe they have to spend a little time in subacute rehab to recover from their stroke. This moves with the person. And you can get one of those briefs. This moves with the person. Rumor has it that people of a certain age don't like cold weather and go to other places. Yes. Or anywhere from two weeks to three months. I appreciate the inclination. Yes. So whether they're skiing in Aspen or whether they're golfing in Florida. Going to reach me for a lot. Activities at this point, I do. Yes. So I wish I could say that I would say that within New England they're very portable and respected from one state to the next. Vermont is ahead of the curve here in the sense that we have created our own laws that say we will recognize these types of orders from other states. And New Hampshire has similarly done the same. Not every state has done that. And it's something we're working on to make sure that they will be recognized from one state to the next. But I will say that there is a national initiative. We call our form Colst, C-O-L-S-T. It stands for Clinician Order for Life Sustaining Treatment. There is a national initiative called PULST, P-O-L-S-T. And that's Physician Order for Life Sustaining Treatment. Now, just for fun, New York calls it MOLST. Medical Order for Life Sustaining Treatment as does Massachusetts. New Hampshire has adopted PULST. I think we're the only one that are PULST because we allow more than just physicians to write these orders. We allow nurse practitioners and physicians assistants to write these orders. So these types of documents exist everywhere. It's just not always 100% certain that it's gonna be respected depending on where you are and what their program is and what their laws are. Carol. Just one round. Presumably this can't be overwritten by a family member. In other words, if a family member is present and that's presented, they can't override that form. That's correct. Finally, I'm kind of hesitating because I've been involved in a few cases recently where we've had some conversations with family members who have had different ideas about what would be okay to do even though we've had documents in place by an individual. And it's not an easy conversation to try to educate those family members, particularly if they're the family member that has decision-making authorities about what they can and can't do. It could be a relatively simple thing. A family member knows that they might have a FIV or something like that and their heart may stop at some point. And all of a sudden, the directive says do not resuscitate. It would be a simple procedure to get the heart working again. And presumably they could move on production. Yeah. You could shock them with cardioversion and get their heart rate back into a normal rhythm. My wife has been cardioverted 13 times, So what I would say is this is what it becomes really important to think about the tools that you need to document your wishes. Somebody who has a pre-existing cardiac condition, they may be 13 times to be cardioverted. They may not want an order like this. They may be like, listen, this happens to me frequently, stuff happens. I'm okay with it. A good advanced directive that explains those scenarios is far preferable to this. This order is really only if it doesn't matter the reason why my heart is stopped, you cannot, do not restart it. Regardless of the clinical context, whether it's because my AFIV is acting up or because of some other reason. If I've said no, it's no. So if you're not, if then is kind of in your thinking, like if it's this, well, then I would want it. But if it's that, then I wouldn't want it. You don't want a medical order. You want a good advanced directive that explains those kinds of situations, those nuances, the context. Yeah, because it matters. Because we want to make sure we're doing the right thing because there's no do-over if we don't suscitate. I was just trying to remember now, are there any directives on license these days and driver's license? That's only organ issues, right? Yeah, that's only organ donation. But the one thing you can do is when you register your document at the Vermont Advanced Directive Registry, you will get a sticker that you can put on your insurance card as well as on your driver's license that gives you the little teeny print of the number to call the registry to get access. So there is a way to make the information more readily available rather than just carrying around a lot of paper. One thing I want to alert you to is you guys are going to be the first to really see this. We are updating. It's been about three years in the making. We are updating the coast order. Back in 2011, that's a long time ago, it's when they all adopted a standardized form for documenting these kinds of medical orders. And we've subsequently learned and we've learned more about these orders and how to make them work for people. So we have created, we have made, we've looked at all these other Ulst forms that are out there, particularly ones that are neighboring states, to try to bring our form and the other forms that first responders and hospitals are seeing to be in greater alignment so that it's easier to find information. And frankly, this order, absentee instructions could be printed all on one sheet of paper. And that is the key because the other order had three or four pages. It was kind of complicated. So the goal here is to streamline what first responders need to know on the first page and then additional other interventions that would be probably more applicable once you got into the hospital. No one's putting a feeding tube in someone out in the field, not in the necks of the ambulance, that we're not doing this. So we've tried to reorganize it. We're going to do education over the next couple of months and then we will launch this as the new Colst order for the state. And we've been working with the Department of Health on this as well as palliative care providers. So that's kind of the landscape of decision making and the tools we have available. And I guess just for the last few minutes, I wanted to just mention, since I know you're going to be thinking about a revision to Vermont's law on medical aid and dying, all of these tools and all of these kinds of decisions are really intended to help promote people to tell us what matters most, particularly as they approach end of life and that people are aware also of what their end of life options are. So when we're talking about advanced care planning and advanced directives, part of the conversation usually also includes telling people about the kinds of care and services that are available to them if they develop a life limiting illness where we know that their time is shorter than maybe they would like, but we want to make sure they're living as fully as they can until they die. And so there are additional kinds of programs that are out there that can support people in that. You probably hear a lot about palliative care. I don't know how much you are all familiar with that. So palliative care is probably the, I printed it off just because I want to make sure I remembered how to say exactly what it is. It's interdisciplinary care, meaning it involves not just physicians, but nurses, spiritual care, social work that's really intended to reduce suffering and improve the quality of life for patients who are living with life limiting illness for them and their families. So I always refer to palliative care clinicians as specialists with a very big toolbox to address symptoms. Symptoms that can make people's life not very fun and how do we manage those symptoms? So people can engage in the things that they want to be able to do for as long as they can and manage their symptoms so they can continue to live fully. You don't need to have a life limiting illness or be close to dying to need palliative care. Sometimes they just have a unique set of skills that really allows people to say, well, gee, if we manage this, that and the other thing, all of a sudden you're back to doing the things you enjoy. Questions? If somebody is in hospice, do they automatically get palliative care? That's a great question. Palliative care is like this big umbrella term and hospice is a special kind of palliative care that happens at six months of life expectancy. So all hospice is palliative, but not all palliative is hospice. Does that make sense? So I have a question about that then. So, we assist all of you. Actually, I just have a question. Copper, you have a question. Yes, thank you. When we were making this out, I have to say this was probably, all these documents was probably one of the hottest things that I've ever done in my life. And I'm thinking back, some of those questions I answered with, if you think that I will be able to function, give me the tube or whatever I have to have. And I'm wondering if that's, if I answered that question so that somebody could really, I mean, I talked to my kids, we did. They seem to know what we were talking about but I was wondering, I don't know if I was clear enough on what to do and what not to do. I'm going to tell you about that. And I don't know how I could have answered it any other way. It's just that I felt that if I could be brought back, especially when I had the heart attack, I wanted to be, if I could function, but I didn't want to be, I was going to be a vegetable. And that's the word I used, by the way. You're not alone. I see that all the time on Advanced Directives. I don't want to be a vegetable. People say that all the time. In fact, someone said to me, I should add that as a checkbox on the list. Oh, please don't. I won't. I won't. You probably have to define that. Yeah. The best one I had, the person said, what would be most important to them at the end of their life? And what would bring them comfort? And the person wrote, dancing naked ladies. That was, that was literally what was written on their Advanced Directives. So I'm telling you to put anything you want in an Advanced Directive, whether or not we'll be able to fulfill that obligation. It's not in the medical order. It's just in the Advanced Directive. So those questions are pretty fun. Sorry. Well, I didn't raise my hand. So I guess it doesn't matter. Oh, it doesn't sit. So Advanced Directive takes precedence over this, right? Over the cold starter? Yeah. No. No. Yeah, generally. But if you don't have one of these. So like, so my Advanced Directive, we'll see. I don't have one. Yeah. Mine says over flood basically, right? So. That's fine. Yep. It just means that, that what will probably happen in your situation, and this probably speaks to your question to Representative McFawn, is that a lot of times we don't know. We actually don't know what's going to happen. We don't have enough information to know whether or not your problem is fixable. What level of restoration we can actually get? We just don't know because we don't have enough information. So what it could mean is that they'll start doing things and they'll try to see if you're turning the corner medically and starting to improve. And then we know we're headed in the right direction, right? Because they're saying, listen, let's try it and see if they're starting to get better and we're getting more information about what's going on because we can check all these other systems that are, how are they functioning then, hey, we're going in the right direction. We also may learn that they're not improving the way we would expect to see or what we would like to see. And we're starting to get worried that we may not be able to restore them to the level of health that you're saying would be important and necessary. And then we can make a correction. We can start down a path and see if it's working. And if it's not working, if it's not achieving the goal, it's absolutely an ethically permissible and medically appropriate to say, if this isn't achieving the goal, we're not going to keep doing it. We should only be doing things for people that will achieve achievable goals that they've identified. We don't do things to people just because we can. And there will come a time where we'll reach, we'll bump up against the limits to what our medical technologies and interventions can offer. And when that happens, our obligations must shift to comfort. We can't just do things to people and treat them as an object, especially when we know it's not helping them and we are burdening them by doing it. Then we must shift to more of a comfort-focused care plan. So to your point, it's okay if you don't exactly know. If your family knows that there are certain things that are unacceptable to you, but maybe you wanna try to see if you can get you back to the level that you would find acceptable. But when we learn that maybe that isn't achievable, your family will know to say, then we're not gonna keep going here because he said this isn't okay. So my best advice is not to get too hung up in specific treatments and think more about the goal. So to your point, if I can't recover from this and get back to doing things that I define as what gives my life quality, then that's not a life worth living for me. I'm mine, I always advise everybody else. So I talked to about it. I was very specific, basically, if it's to the situation where you can't live. Independently, yeah, basically, without life support, then that's the point, but do things ahead of time. Right. So that's, and so goal-specific planning is probably more useful than treatment-specific planning because the treatments are changing all the time. We get new technologies every other day. There's no possible way for us all to keep up, but if we tell the medical team, this is the goal, they can tell us, well, these are the treatments that are gonna help you achieve that goal and these are the treatments that aren't even close. So we're just not gonna worry about those. We're only gonna focus on these. Thank you. I was just gonna say, I mean, I've started filling these out several times. Seriously, when you get into those questions, you're talking to your wife or one of the kids or something, and this is what I'm thinking of. And then they start asking questions before you know it, put it aside and say, well, I'll take care of this later. I don't wanna say you'll make a, you're supplying people, they don't finish, right? Okay. I will help you finish first. You'll help me fill it out beside you. I might wanna get back to my question. It's about the palliative versus hospital. Yes. And one of the things that I'll say my family had struggled with was that it was really hard to talk my mom into going the root of palliative when she had cancer. And then we finally did. And it really was hospice, which we didn't realize. I think even people in the health profession have sometimes mixed them. And so we, she didn't want any crazy things to happen to lengthen her life. But on the other hand, she had a urine infection and they weren't, they didn't want it, they wouldn't treat it. We had to go through quite a bit in order to get that treated because that's sort of a part of the disease she had that was moving in that direction. But on the other hand, they wanted to treat the, you know, the discomfort, but not to us, it seemed like this is a simple thing. Let's treat it and then she'll be, have a little more time and we never did win. So I'm just, and this was not in Vermont. This was in Rhode Island. And so I just wanted to say, uh-oh, I need to go to go have a little ethics conversation. Yeah, no, it scares me now. And I meet many people in my family for what are they signing up for when they say hospice? So that's a great question. And I think there's a lot of confusion around that. And the truth of the matter is right now, certainly in Vermont, Halleative Care is available. It's more readily available in the hospital to be perfectly honest because Halleative Care as a program, you have to remember hospice is a program that's been defined by the Medicare hospice benefit, right? It's a program. There's eligibility criteria and once you're eligible, if you sign on, it comes with all those services. Halleative Care, because it is not hospice, it's palliative. It falls as an outpatient service. So in the community, it falls under our general home care benefit, right? Which is different than hospice is its own benefit under Medicare and most insurances follow Medicare. Halleative Care falls under the federal home care benefit, which means you have to meet certain, it's completely different. They treat it like home care. There needs to be a skilled nursing need. You need to be homebound, which most people on palliative care are not homebound. Interestingly, for hospice, you don't need to be homebound because they figure if you have limited life expectancy they don't wanna confine you to your home. But honestly, so there's some, and it's bigger than Vermont. It's not a solution Vermont can, it's not something you can solve because it's federal. But that means that in an outpatient setting, what hospice programs have done is they have created palliative care services that are often being provided by their hospice nurses, right? So it's the same people. But you should always know which program you're on. And depending on which program you're on, you have different benefits that are part of that program. And so in general, I have Dr. Palliative Care, a colleague of mine just kind of spell it out. So for palliative care, you always need to have nursing services, but it's not necessarily in the outpatient setting as interdisciplinary as the hospice program is. When you're signed onto hospice, you're getting nursing, social work, case management, spiritual care, all of it. You're getting that. But on palliative care, you're always gonna get nursing because it must have a skilled nursing need because it falls under the home care benefit, but the other services are more a la carte. You don't get them the same degree. Any equipment that a person would need who's on hospice is provided by the hospice Medicare benefit as well as all the medications falls under the hospice Medicare benefit that's related to their terminal illness. Under palliative care, all of the equipment that they might need is subject to home care rules and the meds are not included as part of the benefit like it would be if you're under hospice. So they are different programs in the outpatient setting. When you're in the hospital, they call the hospital, they call the palliative care service and they come and down and do a consult, they're a consultative service and they make recommendations about how to manage the care needs. So it is a little bit different in terms of how it's accessed, I guess, in the community. And some of that is driven by federal law that we can't change. I mean, we'd like to because we think it makes no sense. And the other limiting factor is we don't have a palliative care physician on every corner. It's a specialty. And so we have a pretty good group of palliative care physicians in the state and a growing number of them, but many of them work in the hospital setting or with their affiliated with a home care hospice program. But for hospice, it doesn't mean you can't go to the hospital and have certain things treated. And that is a confusing point. I think hospices wanna know if someone's going to the hospital because generally the whole goal of hospice is to keep you out of the hospital. So they wanna know before someone goes in just to avert some kind of a billing nightmare which is usually what ends up happening. But it doesn't preclude people from accessing the things that they want. And you always get to decide. Just because you've signed on to hospice, if you want your UTI treated or you want something treated, even if it's related to your terminal diagnosis, they can discharge you from hospice. I mean, worst case scenario is you say, I wanna discharge from hospice because I feel like I wanna get this thing treated. And if I need you, I'll call you back. I mean, it's not like people don't do it every day but it's absolutely doable. It's a choice. They can't force you. Force is a problem. And not treating a symptom like that is concerning to me as an ethicist. And I'm sorry that that happened to your mother. It's funny, she's a rule follower. Rule followers don't like to drop out of hospice and go to the emergency room which is what I kept telling them to do, but. Yeah, and I think, and as I've said, even to people in Vermont, if they have had it for whatever reason, not the best interaction, I've said call a different hospice agency. I mean, it's all about meeting the needs of the patient and what matters most to them and how do we best accommodate their needs? And that's good feedback for hospice organizations that maybe they have somebody who's used to practicing someplace else and they did it a different way and we need to reeducate them to how it's done here. But the primary issue is the patient's interests. That is our fundamental obligation is to meet the patient where they're at and to move forward with a care plan that hopefully supports their goals and also makes medical sense and not to expedite an end-of-life trajectory if that's not something that person is interested in. We may not always be able to control it. But just knowing that there's hospice and palliative care I think is important for you all as you're considering this upcoming bill because the other option that we have in Vermont for people is to pursue medical aid and dying which we call in Vermont Act 39 which is the ability for people who have a terminal diagnosis. So they meet hospice eligibility criteria they have a prognosis of six months or less to request a prescription intended for the purposes of hastening their own death. You passed that law in Vermont back in 2013. So we are almost 10 years in which seems remarkable. And you should have received, but I don't know if you've looked at it yet the report from the Department of Health that gives you the data on where we are in Vermont. It's on your, it should be on your legislative reports page Vermont Department of Health is required to provide you every other year with a update on the statistics for how we're doing what we're finding in terms of people who are accessing Vermont's law. And so what I can tell you is since you passed the law in May of 2013 to where you are now this report team was through June 30th, 2021. You have been 116 individuals have fallen into have requested medical aid and dying in almost 10 years which is pretty much what was expected back when we were first talking about this in Vermont is that we expected it would be 10 to 15 people a year would be pursuing medical aid and dying. Physician aid and dying used to be called physician assisted suicide. There's all kinds of acronyms for it. I think the current terminology is medical aid and dying. The data that we reported was that 77% of those people requesting prescriptions had cancer. 11% had ALS, 5% were due to other neurodegenerative conditions and 7% were other events. It's important to note though that of the people that request prescriptions only about 60% actually use the medication. So there's something about knowing you can that gives people comfort and knowing they have control if they need it but not every, and this is consistent with other states that have similar laws only about 50 to 60% of people who request these medications actually use them to hasten their own death. That's a much smaller percentage than who obtain prescriptions. So that's also on the spectrum of options for people in Vermont as they're thinking about and planning for. Important to note, it cannot make a request for medical aid and dying in your advanced directive. Just wanna put that out there because in order to comply with the law you have to have the ability to make decisions for yourself and be acting voluntarily to go through the process. If we're looking at an advanced directive it means you've lost the ability to make decisions for yourself and we're now looking to others to do that. So someone else like your healthcare agent can't obtain a prescription for medical aid and dying and then give it to you to hasten your death. That would be called euthanasia and that's illegal in every state in the United States. Any questions now that you've had a crash course on advanced care planning, hospice palliative care and medical aid and dying? I mean, Cindy, this has been fabulous. In the 10 minutes we have left, would you draw attention? We have posted your summary report your annual. Oh, my task force report, sure. And just to draw our attention to that which is on our webpage. So every year since 2009 actually since I began kind of directing the statewide task force we work with a group of palliative care providers from across the state and others. We're interested in making sure that we do our best to be checking in on whether or not people have access to these kinds of services and making recommendations to you if and when we find barriers to services. And so over the years we have made some recommendations which I'm very grateful that you've pretty much followed every single time we've done it. And we work really hard before we even come to you to get some consensus out in the community so that we can make sure that we have access to these kinds of services. So that we can get some consensus out in the community so that hopefully it will make your job easier. You're not having to have people do get out here in the committee. And this year we made a couple of recommendations. One was with respect to remote witnessing for advanced directives. Did we do that? You did. You extended it and you extended it. And I think the next step is to think about whether or not this should become a permanent provision. I think it's a good idea to do that. I think it's a good idea to do that. I think it's a good idea to do that with our colleagues and with the other advocates to see if this makes sense. Next year. Next year. Okay. But you extended it into next year. So there would be time. I thought we wanted to make sure. Yeah. Just to make sure that people who for whatever reason are still in some sort of a restriction from others are not. It's not a barrier to them doing advanced directors because they can't. They can't. You know, they can't do it. The other recommendation we made is that you were going to be. I guess taking up as 74. And that basically has three things that they're trying to do there to make changes to that law. One is to remove the, in the physical presence requirement, much like what we've done for advanced directives to make sure that. is you need to be able to go through a process with the physician who's gonna be prescribing the medication by making two requests in their physical presence, asking for them to write this prescription for you and those requests can be no fewer than 15 days apart. So just over one day, more than two weeks. And under Vermont law right now that has to be in the physical presence, you have to do that face to face. You can imagine- You have to make a second request that you've made a first quest, you've had time to think about it and then you make a second request which basically allows the prescribing physician to offer you the opportunity to rescind and not move forward once you've had time to talk about it. They're basically proposing the advocates for these changes are proposing that we remove the in the physical presence that we've certainly seen in and allow for telehealth the way we do with many other things now particularly with since COVID we've gotten really good at doing telehealth and they wanna make sure that that is not that this particular decision isn't excluded from telehealth. So that's one provision that they're asking for to make sure that we're not throwing up barriers for people who are already vulnerable at this end stage of their life. They also wanna clarify the immunity provisions for other professionals who are involved in the process. So it's not just the prescribing physician that's involved there's a pharmacist who is a professional that has to fill the prescription. There are nurses who may be present. There is a second opinion that needs to be given by another physician just to confirm the individual's terminal diagnosis as well as their ability to make informed choices. There's no explicit language in the current law right now that gives those other people who are necessary to fulfill the provision of the law any explicit immunity and the advocates are requesting that we make that explicit so that there's no lack of clarity that if you are the person who's confirming their prognosis or you are the pharmacist who's filling the prescription you too if you're doing it in accordance with the law are immune from civil, criminal or professional liability. And that currently exists for the prescribing physician only and they wanna make sure that it exists for everyone who's involved in the process. It's implied because obviously you can't access it if you can't do the process but it's not explicit and that has presented a barrier for some people from even being involved even though they're not the prescriber themselves. And the last thing they wanna do is to there's a 15 day waiting period between those two oral requests. And then I'm not even sure how it came to be but Vermont, unlike most of the other states that have this as an option we tacked on an additional 48 hours before the prescription could be written. I have no idea why we did that. I'm sure there was a lot of changes happening to that law before floor amendments that were being passed but they wanna just remove that extra 48 hours before you can write the prescription. I will say and I'm sure you'll hear testimony from people that are more intimately involved with the process that it rarely only takes 15 days to do this. There's a lot of, I mean, you've gotta get a second opinion. You know, there's, you've gotta get the prescription filled. It's not, you can't just do this quickly. So I think it's genuinely taking people a month to six weeks anyway. And so tacking on this extra 48 hours before you can write prescription just seems like an arbitrary barrier to getting it done. And for many people, this is not a decision they come to easily. And oftentimes the time period for which they could use the medication is quite short. And so those are the three provisions that they're asking which is really about improving accessibility and clarifying immunity. And as Vermont has already decided that this will be a legal option in Vermont it seems appropriate to ensure that we're not imposing artificial barriers while still maintaining the protections that were always intended. And we as a task force support those recommendations as outlined in S74. Thank you. Thank you for sort of saying that and putting that as the beginning just to let the committee know. I mean, one reason that actually I asked Cindy and the Vermont Ethics Network to sort of start the conversation because we don't start the conversation of decision-making around end of life with this. Rather we start with whether it's ethics, whether it's end of life, palliative care and all those things that Cindy that you talked about in the beginning because that is really where the conversation starts. And so this is the committee hasn't, I believe that Topper, myself and Abe and actually I don't even think that Teresa was here. Are the only? No, just you and me. Okay, so it was only Topper and I who were sitting on this committee or in the legislature. Carl, you were not, were you here during? I thought I was, but I mean a long time ago or what? In 2013 is when it was probably, okay. So it really, I mean, not that, I mean, anyway, this is the first, I mean, so we're gonna start at square one. And in a sense, before we looked at legislation, what is and then how we're going to change. I wanted to start the conversation with what is the subject matter we are talking about and the Vermont Ethics Network has a reputation and by your very nature of being an ethicist, you are not advocating for something. So I wanted to start there. I didn't want to start with people who support the bill and people, but rather the framework of this is ethical decision, whatever, and this is end of life. So anyway, committee starting next week, we're going to have Jen Carby, perhaps one go over what the bill, what the current law is and then what the language of the bill, although, you know, whatever, and we're gonna have former representative, Sandy Haas, who was on the committee and on the committee since a long time. So any of the husband step by step, any of the decisions that the legislature made that emanated from this committee around end of life, around palliative care, around hospice. And so she's gonna do a bit of history around how we got where we are now. And Topper, you have our last question. Yeah, thanks, Madam Chair. Cindy, what about somebody present in the room? Do they, I can't remember, do they fall under the immunity? I think they, yeah, okay, I thought they did. They do. There's already languages that said there can be no action brought against someone who is merely present in the room, which was really, I think, very helpful for hospice nurses. Many patients who pursue medical aid in dying are on hospice. Because as, you know, as Madam Chair said, this is, people don't start here, right? They go through a much longer process before they come to a place where they're saying, you know what, I think I want to explore this option. Many are on hospice already, and sometimes those hospice, they want the hospice nurse to be present. And so because you included language that said no one can be, everyone who is, there's no liability for being present when someone self-administers the medication under the law. That did help nurses, certainly, but also it was intended for family members as well who may be present when the person ingests the medication. And so that's already covered. Yeah, I thought it was, I just wanted to make sure. Thank you. Thank you. And again, committee, we will have, this is just the beginning, and we will have ledge council and others available as we get more specifically into S74 to answer those specific legislative questions. And then we'll have testimony. And one of the things is a committee will talk about or you can send me emails, who you want to hear from, who is important for you to hear from as we move forward. But Cindy, welcome back. Thanks so much for having me. It was so nice to see you all in person. And rather than, I know Julie said, I had the option of being on the video and I feel like I spent so much of my time on the Hollywood Squares mode that I was like, oh, if I can come in person, that would be so much better. Plus I can't really give you all my like handy little forms online. I just brought, I handed out everything that I had. We have a few extra forms that I think we can give to you. But all of the forms that I handed out are available on the Vermont Ethics Network website. So you certainly can download any form that you want from that place. And thank you very much for the opportunity to come in and enjoy this sunny day. Thanks. Thank you. Thank you very much. We're going to, is it committee take a 15 minute pause and break before we then change subjects again for our third sort of subject, which is about global commitment. And having us understand it a bit and where do the policy areas that this committee focuses on fit in and not. So with that chopper, we're going to take a break for 15.