 Hello, everyone. My name is Jane Katten, and I'm the CEO at Agewell. I'd like to welcome you to our show, Aging Matters, and I'd like to thank our sponsor, MVP Healthcare, for making our show possible each month. As you may know, Agewell is the largest area agency on aging in the state of Vermont. We serve anyone over the age of 60 or under the age of 60 with a disability on long-term care Medicaid. Our goal is to make sure we provide just the right wraparound services to allow eligible individuals to stay healthy and independent in the setting of their choice. Each month on Aging Matters, we try and find topics of interest for all of us as we age, and those topics may involve subjects that will help us to all age well. Today on our show, we're going to explore a very interesting topic related to long-term care planning, advanced planning, as we think about the future and even end-of-life matters. Today joining me on our show is Cindy Bruzezi, who is the Executive Director for the Vermont Ethics Network, and she's going to help us explore these topics. So Cindy, welcome. Thank you for coming to our show today. Thanks for having me. I have so many questions to ask you this afternoon. But before we dive into those, Cindy, maybe what you could do is tell our viewers a little bit about the Vermont Ethics Network and your role as Executive Director. Sure. So the Vermont Ethics Network is a very small not-for-profit. We're located right in downtown Montpelier, but we serve the entire state. And I'd say a little bit of New Hampshire as well. We certainly get calls from folks in New Hampshire because so many Vermonters get care at Dartmouth and at those border hospitals. And so my work really, or the Ethics Network, really centers in sort of three general categories. We do the bulk of the work around the topic that we're talking about today, planning and medical decision-making and thinking ahead about circumstances in the future and what matters most to people and how do they make that information known to their loved ones and what are the tools that are available for them to document those kinds of decisions. I also do work in Ethics, the middle name of the Vermont Ethics Network. And so I support hospitals and non-hospital healthcare facilities and basically recognizing, managing, and ultimately hoping to prevent ethics conflicts from occurring in those clinical settings. I mean, medicine is very complex. People are living longer, so there's always complexity. So it's kind of inherent in clinical medicine to have some uncertainty about what the right thing to do is. And so that's pretty much what Ethics does. And then I also direct the statewide task force on palliative care. So all of these topics, Ethics, medical decision-making, palliative care, they kind of all intersect around caring for people as they're aging through the lifespan. Oh, wow, sounds fascinating and very complex, as you said. So let's dive into our topic today and jump into a few questions. So, Cindy, as we think about making end-of-life healthcare decisions, could you please describe what advanced healthcare planning means? So advanced, to me, I think the simplest way to put it is exactly what it says. It's planning in advance for future healthcare needs. But I like to think of it as planning for the what-ifs that kind of happen across the lifespan. So there's always chances that something sudden or unexpected can happen. And so ultimately, what advanced care planning is about is making sure that the care and the treatment that people want aligns with what they get. And so thinking about circumstances that could happen in the future and making your wishes known about what's important to you, things that you would find acceptable, things that you wouldn't find acceptable, sharing that information with your loved ones or family or friends, and then ultimately putting it in writing is all part of that advanced care planning process. And it is a process. It's intended to be revisited as we age across the lifespan because we know that people's values change over time. What matters most to them changes over time. Their circle of friends and family changes over time. And so it's important to revisit these things periodically. Mm-hmm, fantastic. Well, I think it gives us a lot to think about because as you say, things change. And we have to do a lot of communicating, I imagine. So let's go a little deeper. Why is it important to think about health care planning, and you alluded to this a little bit, before a medical emergency or serious illness arises? Yeah, so I would say that's the hard one, right? Because who wants to think about things that are unpleasant? Right? I mean, nobody really does. But the fact of the matter is that sudden illness, accidents, these things can happen to anyone at any time, regardless of their age, regardless of their baseline health. And they may find themselves in a situation where they're not able to communicate with their health care team. And it's really difficult if we don't know what matters most to this person and there's decisions to be made. We may not know who the right people are to talk to, and we may not know what are the priorities that we should be focused on as a health care team. And so it's tough to do that kind of critical thinking, big thinking in the midst of a crisis. And so lots of people do kind of manage their health care by crisis. So a crisis happens, we make decisions, we go along for a while, another crisis happens, we make another set of decisions. And so the goal here is really to think about that a little bit in advance when you're feeling well, maybe you've had some experiences, you've formed some opinions about what you like, what you don't like, what would be acceptable, what wouldn't, and then you share that information ahead of time and you identify the people that you want to have speak for you if you can't speak for yourself. And I'd say that's probably one of the single biggest and most important things that people can do in advance. In most states, the law tells us who will make decisions for us if we can't make decisions for ourselves. There is a very prescriptive set of rules and a hierarchy if you will that says, well if you can't make decisions for yourself then the decision-making will default to a spouse if there is one or next of kin in some order of priority. Vermont just has no such framework. It doesn't mean that those people can't make decisions, it just means there's no order of priority, there's no preference given, it's not automatically going to be your next of kin. So this is an opportunity, I think, that people have in advance to think about the people that know them best, to think about the people who can be good advocates for them at a time when they maybe can't advocate for themselves and to make that a legally binding kind of person to do that work in the event that they can't do it. And that's difficult to do in a crisis, especially if your decision-making is impaired and you can't communicate. Right, right. And I think the most important thing that I heard there is take the time before you have a crisis and be thoughtful. It's so much easier to think about big questions and difficult things when you're feeling safe and calm. Right. It's so much harder to do it when the stakes are high and you're scared or frustrated or worried and you're not sure what to do. And a lot of information is coming at you all at once. So this is an opportunity to sort of take a step back, slow down and also get your questions answered. Like if you have questions about your illness or what's coming or what to expect, there's opportunities there to get those questions answered so you can really be informed about what lies ahead. Yeah, great points. So it sounds like a big piece of planning, and now we're going to talk a little bit about advanced healthcare directive. So planning is about thinking what might go into those directives. Can you talk about what the directive or advanced care directive actually is how to get the process started? And do they have to be legal documents or could I write it on the back of this piece of paper? Yeah, so those are great questions because in Vermont, we are very liberal in terms of what people can do to formalize their planning documents. So the Vermont Ethics Network has plenty of forms, and I know they'll put the website up on the screen so your viewers can see it. So you can look at forms that are, questions are prepared in advance and it covers kind of the big things, but you're also free to make your own document, write your own wishes down, a long personal statement. The only thing that's needed is that it's signed by two witnesses, and there's no notary requirement in Vermont, so you don't have to go trekking to find a notary. You just need to have two adult witnesses who are not your immediate family sign that they've witnessed the document and you sign in their presence, either virtually or physically in their presence, and then it's a legal document. So as long as it conforms with Vermont's witnessing and signing requirements, these are legal documents. So people can feel free to customize things. They can use the forms that are provided by the Ethics Network or by their attorney. Attorneys are preparing these. Estate attorneys can prepare these as well, although you don't need an attorney to do this. You can do this sitting around the kitchen table with your family. And having conversations and then have your neighbor's witness kind of a thing. You can keep it informal, but it's a really great way to sort of solidify and make sure everybody knows what the plan is. And so should something happen and where we need to be looking at these documents. And I think it's important for your viewers to know that we're not looking at these documents as long as we can talk to the individual directly. People still get to call the shots on what will and won't be done to their bodies as long as they have the ability to make those decisions. It's only when we can't get that information directly from them that we need to talk to someone else that we're looking at these documents. And these documents and your wishes combined with the person that you just designated to make those decisions, we call that person a healthcare agent. We used to call it a durable power of attorney for healthcare, but it's the same thing. It's the who, who gets to make decisions. They need to work in collaboration with your healthcare team and to promote decisions to be made in accordance with what you've specified as most important. Perfect. So once the document is created, I guess it's really important to find a good place to put it that somebody knows about, right? Yeah, and it used to be that people put these in their safety deposit box and I can strongly discourage people from doing that. These kinds of things, these situations almost never happen when the bank is open. And so then we're in this like pickle. So Vermont very proactively created a registry. It's a secure repository where people can send their documents. They'll be scanned in. So if you're handwriting these, it'll be in your writing. And then they're accessible to healthcare providers and facilities across the state. And they're even accessible because it's online outside of Vermont. So people can get access to this if they're traveling. People will, it's voluntary. You don't have to submit your document to the registry as long as it's assigned in this document. It's legal. And you should give it to the people who are making decisions for you. You should give it to the hospital where you're most likely to receive your care. You should give it to your doctor. Your circle of friends and family. And then the other option is to also give it to the Vermont Advanced Directive Registry so that they can look it up directly into the registry and we don't have to worry about trying to track down someone who has a copy. Oh, that's a great idea. The registry, remember the registry. Perfect. So you were just alluding to another term, a healthcare agent. So let's talk a little bit about the healthcare agent. Is there a difference between a healthcare agent and an advanced directive? It's a type of advanced directive. So there's different kinds of advanced directives that people can complete. And they may have heard terms like living will, durable power of attorney for healthcare, terminal care document. These are all the different kinds of tools that have existed since this whole thing began back in the late 70s, early 80s, where we started thinking about, gee, we should be planning for these kinds of things like we planned for so many things in life. And so a healthcare agent just covers who can make decisions. So it's a type of advanced directive. Sometimes the people call it a proxy directive. Some states call it a healthcare proxy. Vermont calls it a healthcare agent. Again, synonyms for who gets to make decisions, who has the legal authority to make medical decisions. And then there are other types of directives that speak to the what. What's important? What matters? What do we need to know about this person to take good care of them? We used to call that a living will. Okay. But living wills were very narrowly defined around a very specific type of end-of-life scenario and had language that was kind of ambiguous and difficult to implement. The language was, if I have a terminal illness, there's no hope for my recovery. I don't want any extraordinary measures taken. I want care directed at my comfort, that kind of language. Unfortunately, words like hope, recovery, extraordinary, those all mean very different things to different people. So it became very difficult to implement a document when we weren't really sure what the person meant. And so we've now kind of expanded on the concept of a living will to make it broader, not so narrowly confined to just end-of-life to allow people to articulate not just what they don't want, but also what they do want so that we can align, again, as I said earlier, the care and treatment that they get. And so proxy directive or the decision-maker directive, the who, and the plan, the what, what's important. And we have a little campaign that we started years ago at the ethics network called Who's Your Person? What's Your Plan? And really, that's really just a simple way of talking about advanced care planning and thinking about the two areas people need to think about. Who makes decisions if you can't? And what do they need to know about you in order to be able to be a good advocate? Great. I love that campaign. That's fantastic. Cindy, what's the best time for someone to fill out an advanced directive and who can help with that? So you talked a little bit about, well, maybe it's your friends or family, lawyers, but when's the best time to do it? So what I would recommend, which I know is going to be kind of a odd thing to say, but I think anyone from the time someone turns 18 and they're a legal adult, that is when they should start the process of advanced care planning and even the process of completing at least a proxy directive or the naming of a health care agent. Because as we know, things can happen. At young, old, it doesn't make any difference. Unexpected things happen. And so it's really important, I think, for people to think about that in advance and to start the process at 18. When you move from your pediatric physician to your adult family medicine physician, when you're going off to college, that's the best time to start the process. And I think if we have these conversations often and early, it becomes so much easier to have them when the stakes get higher. I think you're right. Communication is really key and not being afraid to talk about these things. Exactly. Yeah, doing it together. Let's see. I have another question and it goes down a little bit more the medical path. Can you tell us and our viewers about the difference between a DNR or do not resuscitate order and an advance directive? That's a great question too. These terms are so often confused, I think, and not just by everyone, but even by healthcare professionals. Sometimes they're using these words interchangeably and I think that also creates confusion. So an advance directive, as we were talking about, it's a document that a person, anyone over the age of 18 can fill out as long as they're their own decision-maker. So if they have a medical guardian as someone else who's making decisions for them that the court's appointed, then you can't complete an advance directive, but as long as you're an adult and you're making your own decisions, you can complete an advance directive and it's really a preference-based document intended to guide future healthcare problems at a time when you couldn't make decisions for yourself. So you can only complete one when you're an adult. You can only complete one for yourself. You can't complete one for someone else. They have to complete their own and they're thinking about a time in the future when they wouldn't be able to make decisions for themselves and trying to make a decision about what would give people information about what would or wouldn't be the right thing to do for them. DNR orders are a type of document that's like an advance directive, but not quite. It's actually a medical order. So it's a different type of document and it only focuses on a very narrow number of treatments, things that we might be considering if someone's very sick and they might even die. So the use of CPR, the use of breathing machines if a person can't breathe for themselves, the use of providing artificial nutrition and hydration if they're not able to take in enough food or liquid on their own. Those kinds of really more technical interventions that are aimed at saving people's lives or prolonging their life and some people may or may not want those things depending on their own values and what's most important to them. And so these are medical orders they're actually completed by your clinician so you don't fill one out for yourself. It's like writing a prescription, right? You can't write your own prescription for medicine. You can't write your own DNR order. You need that healthcare professional to have a conversation with you so that you fully understand what it is you're saying I don't want. So that you fully understand what that means to say no to CPR. So you have a good understanding. And then it's actionable so because they're medical orders they're binding on all healthcare providers including first responders because they're intended to guide the current treatment plan. What are we going to do today if something happens? Very different. Future-oriented advanced directives preference-based thinking about the future DNR orders they guide the here and now very narrowly crafted you can't name a healthcare agent in a DNR order and they're binding on all healthcare providers including first responders. So if someone is certain, let's say, that they don't want CPR that's just not something they want doesn't matter why that's just not an intervention they're interested in. It's great that they might have an advanced directive that says that in it but EMS can't honor that. I see. What EMS needs is they need a medical order signed by a clinician either a physician an advanced practice nurse or a physician's assistant that says I've had a conversation with this person they understand what it means to say no they don't want this and then they sign that order. EMS is looking for that order when they come to someone's place of residence. I see. And if they find that order they're obligated to respect it and to honor it. But if someone's just saying advanced directive somewhere and it says they don't want that that's not good enough because CPR is one of those interventions that we assume people want us to try. And so if you're going to say no we want to make sure people fully understand what that means. Perfect. Well those are great differentiators and it sounds like we have to have all these forms and get them sorted out in advance and make sure that there's somewhere in our residence that our family member could quickly grab if we're incapacitated. Yeah the recommendation for these types of out of hospital medical orders and that's what they're called Vermont calls it DNR Colst so the C-O-L-S-T stands for clinician order for life sustaining treatment so these are medical orders the recommendation is that they be on the fridge or in your refrigerator. If a person lives in like a residential care home they may have within the facility or the home a set place that they've already trained the first responders that come to that facility this is where you look it's in the first cabinet you know some place specific but in general it's on the fridge or in the fridge and local EMS will have something you're in your town called a vial for life or a vial for life and they're like a a red magnetized thing that you can put these orders in and stick it to your fridge or if you want you can put them inside the fridge so you can ask your local EMS what is the thing that they recommend in your community and to follow that great fridges and forms fridges and forms I like that awesome let's see I have another question for you and then it has to do with what you were talking about earlier shifting gears a little bit to palliative care because the Vermont Ethics Network also has their eye on palliative care so Cindy what's the difference between palliative care and hospice care because we know they're too they're similar to the continuum I guess I would say yeah I like to think of palliative care as this sort of big umbrella term that talks about how do we care well for people who have serious illness and palliative care clinicians trained physicians nurse practitioners PAs who have specialized skills in dealing with folks who have serious illness or progressive illness or even life limiting illness where they have a really big toolbox in order to help people manage their symptoms of their illness so they can live well for as long as they can and so that's really similar to hospice but hospice is really a special type of care that's it's all palliative all hospice is palliative care that makes sense hospice is a specialized type of palliative care that happens when someone has is expected to have six months or less to live so it's a very focused type of care at the very end of life and it's typically defined by the Medicare hospice benefit which says that there are certain types of services that people would be would be getting if they're on a hospice program so all hospice is palliative care it's just special palliative care the last chance of life but not all palliative care is hospice because people could be getting palliative care much earlier in their diagnosis to help them live fully and continue to enjoy all the things that they enjoy doing even though they may have a serious illness thank you for describing both of those things because I think there's a lot of confusion at times when we hear palliative care and people are thinking hospice and it may be end of life care and there is a difference definitely I think the important distinction too is that when someone's on hospice they are forgoing sort of disease modifying or curative types of treatment that's sort of a condition of being on hospice they're no longer pursuing sort of treatments aimed at prolonging their life they're going to allow for a natural death and the disease will follow a natural course in palliative care people can absolutely still be pursuing curative or disease modifying treatments but the palliative care may be helping not just to manage the symptoms of the disease itself but maybe the symptoms of the treatment so that people can continue to enjoy the things that they enjoy doing that makes life worth living for them right perfect that makes all the sense Cindy we're coming to the end of our show but we have just another minute or two and I wonder if there's anything you'd like to share with our viewers that you think is the most important takeaway for them this afternoon have conversations with people that they care about I think doing an advanced directive thinking about advanced care planning is actually a gift a gift to your friends and family because it's really tough to never have had this conversation and to be in the position of having to make decisions for someone else when you have no idea what they would have said if they could and it's really a gift to give to your family and friends to say hey this is what's important to me these are the things that matter and it's okay I trust you to make these decisions for me if I can't it's a really nice thing to do for your friends and family or whoever you're choosing to be your decision maker to help them feel comfortable and okay and able to really represent you well if and when the time comes well at my next birthday to get their advanced directives organized is that an idea that's a great idea that's what I did my 50th birthday party I had my family complete their first advanced directive I think my son was 19 my daughter was 21 and my husband who hadn't done one up until that point finally did one so it was a good birthday fantastic well there you go a great gift so Cindy what I've learned today is that advanced care planning is not just for us and planning ahead is important it's really important part of making sure that we receive the medical care or the treatment or the services that we think are most important to us at certain periods of time in our lives and before it becomes critical so did I sort of get that right? I think you did a great job great so Cindy thank you so much for taking time with us today we really appreciate it and to our viewers always remember that if you or someone you know needs assistance please call Agewell and as you're thinking about advanced care planning there's also case managers at our agency who can help with that there's also the Vermont Ethics Network that you can log into online I know that the website will be posted and other than that please take care think about planning and be sure to tune in next time as we explore some very interesting topics on aging matters thank you and we'll see you next time