This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Sue and I both wish we had understood what palliative care is and how to leverage it. So today we are talking with Dawn Kolderman. She's a registered nurse and senior clinical director of palliative care services at Avow. And we're talking about just that. What is palliative care and when should you call it in? We're sharing four tips. Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music Dawn, thank you so very much. It is great to have you here with us. And you are the expert as a registered nurse for more than 30 years, with the last 20 being focused on palliative and hospice nursing. You are an expert. And part of the thing from my lens of palliative care is when it was first explained to me, it was explained incorrectly. I never took, and Nancy, you've said the same thing. Neither one of us ever took advantage of all the great things palliative care has to offer. We don't want that to happen to anyone else. And so we want you here today to be able to share with us the different kinds of really valuable care that palliative care provides and to eliminate what is so common, which is a misunderstanding about what palliative care actually is. So this leads us to tip one, which is, Dawn, what is palliative care? Well, first, thank you both for having me here today. And I'm really honored to talk about a real true passion of mine. And that is helping individuals at the beginning of their journey be prepared for their end of their journey. And that's kind of exactly what palliative care is. So in a nutshell, palliative care is a level of care based upon a holistic approach to a life limiting disease. So generally, individuals will say to us, well, I don't have cancer or I don't have a significant cardiac event or anything that's going on. So what is palliative care going to do for me? So palliative care, again, is for any life limiting disease. Of course, a cancer diagnosis, a cardiac diagnosis, pulmonary diagnosis. But more frequently these days, we're talking about dementia patients. So dementia is a life limiting disease. And every disease that falls under dementia, again, dementia is a big umbrella. It is, yes. Right? Underneath that, you have several subsets, your Alzheimer's, your Lewy body, dementia. There are so many types of dementia that fall under that. So palliative care is a holistic approach to a life limiting disease. That's a great explanation. And then when we're talking about it, what are some of the differences then between palliative care and hospice care? And that's a great question, Sue, because people often will use it incorrectly. Yes. So it's used synonymously often and we are two totally different levels of care. Palliative care patients, again, are at the very beginning of their journey. So they are still seeking aggressive treatment. They are seeking curative treatment. They're seeing all of their providers. They're going to their primary care doctors. They're seeing their specialists, for example. Whereas your hospice patient is generally at the end of their journey. They are no longer seeking aggressive treatment and they are really seeking comfort care towards the end of their life. And that is the main difference between the two. Well, and I like the fact that you talk about that with palliative care, you're an additional supportive layer of care on top of working with a specialist and other medical doctors that they're working with. It's not an either or. It is not. In fact, it's a true collaboration. So we collaborate with all of our patients, caregivers, every provider that they're seeing, we all collaborate together so that we can really build a plan. This is a life plan. So I think collaboration is key. I think education is key. And I think you'll see that in palliative care probably more than any other medical level of care that you're in. This is this is huge. And you told us a little bit earlier, Don, when we were discussing before the podcast that palliative care isn't just focused on the person living with dementia. No, it is not. In fact, of course, we take care initially of any immediate needs that the patient has, but it is really focused on the caregiver is focused on caregiver burden and stress. And how can we help them help themselves to take care of their loved one? Thank you. And that takes a team. It's not just one individual. So when you are on palliative care, you're part of a team and that team consists of a medical provider, which could be an advanced practice registered nurse or medical doctor. It also consists of an RN. It consists of a nurse navigator whose role is to make sure that you have whatever you need from community resources. It also consists of a social worker, a licensed clinical social worker, and he takes care of the psychosocial needs of the patient and family. And then of course a chaplain because the chaplain is a really key feature to really help with some existential or spiritual issues that are going on. You know, all of that sounds like something I missed out on. Sue, you as well. Oh, completely. When I first talked with Don and got clarity on it. I felt sad for my care receiver. And I felt sad for me that it had been explained incorrectly and neither one of us had the opportunity to take advantage of it because yeah, it would have been very helpful for me and also for my care receiver. Exactly. So we don't want that to happen to anyone else. So let's talk about tip two, which is to actually call palliative care in. So let's start with how you'd find a palliative care organization and what do you need to actually call them in? Do you need a referral from a doctor? How do we go about this? Because it sounds like that's the first thing we should do. So we really want to see patients very early in their diagnosis. So once the patient is seeing, say, a neurologist for dementia patients or maybe they're not even seeing a neurologist yet, but their primary care doctor and the caregivers together, their team have noticed that there's been some changes in their cognitive changes and they can give us a call directly. You can self refer. Sometimes the physicians will refer to us, but we want to get them early in that diagnosis because the earlier that we can see the patient and the caregiver, the more support and help and education that we can offer them. So again, we get our referrals from a variety of different modalities. You can self refer. We get them from primary care doctors, specialist office, hospitals, memory care centers. We are very fortunate in Southwest Florida that we do have some memory care centers here that we do get quite a few referrals. And honestly, it's boots on the ground. People know us. We've been in Cuyahar County for 43 years. They know that a vow is there for the community. So we do get quite a few self referrals almost daily, quite honestly. And again, earlier, the better. Hey, Don, quick question. Tell me if this is right or not. My perception is that most palliative care organizations also have hospice. So when it's time for me to make that transition, I could stick with the same organization. Is that true? Yes and no. Many hospice organizations also have palliative care. So it's a natural progression at some point from palliative to hospice. Okay. Wonderful. So we can either get references from friends or do our own online research to find the ones in our community, at least when it comes to hospice. I did a lot of referring, looking at customer reviews and things like that. I assume it's a similar process here for palliative care. Yes, absolutely. You can look up in your area or your region where there is a palliative care organization available to you. Many of them do offer some telehealth services and things like that. I can't see why any of them wouldn't be willing to speak to anyone on the phone, you know, just to give them some advice or give them some leads, you know, in the area. I think it's also important if to look into your community at those memory care centers or at some of the local assisted living facilities, because many times I can speak for myself only. We go out into those communities to do presentations. Okay. It's very important to get that education out if they're not getting it from their care providers or if they're living in a facility where maybe they don't see a provider as often. It's important that we go in and do presentations to them just to get the word out. Community education. Community education. Yeah. A lot of palliative care providers do the exact same thing for the sole purpose of education. Good. Well, that Nancy and I both have recognized that so much of the care we gave, especially for our husbands were so much more than the physical care of them in the diagnosis. And, you know, I wish I had known about palliative care because it could have lightened my load so significantly and saved me from asking a lot of questions or a lot of different frustrations. So let's talk about in in tip three. Like when to call in palliative care and what the goals of palliative care are. And so we recognize when to start on that journey. So early in the diagnosis, of course, is the best upon the first initial visit, which about 70% of our patients are able to visit us in our clinic. We have an onsite clinic, which is wonderful. And then of course at that point they get the benefit of meeting the entire team when they're there. But we will go to a patient's home, whether it be their private residents, if they live in a facility, we will meet them there if they're unable to come to us. But the first things first, we want to relieve any physical symptoms because when someone's having physical pain, it's almost impossible to start talking about any of the psychosocial pain or any of the existential pain. And the caregiver is going to kind of tune us out at that point if their loved one is having physical pain. So goal number one or tip number one, I should say, we will take care of that physical pain. Okay. So now we've taken care of that pain. Now we really have to focus on our caregiver. We need to help that caregiver because the burden and stress on a caregiver is huge. It is. It's huge. So we like to invite families because we want to know who the players are, who are those caregivers. And if that primary caregiver is really stressed and really that burden is so heavy on them, who's going to step in to give them a break? Well, and that's so helpful that you say that you want to bring the family members in because this is where it truly makes it a family experience. Yes. And that you're also inviting other family members into ways that they could be participating. Absolutely. I think education is key. I think there's a lot of misunderstanding with many diagnosis. Dementia, of course, is one of them. There's so many misconceptions. So it's important to educate again, everyone in the family. We want to make sure everyone's on the same page. We want to make sure that everyone here is the same thing from the same person because your journey is going to be different than my journey is going to be different than Nancy's journey. Everyone's diagnosis, although the same, our trajectories are going to be very different. Our journeys are going to be very different. So collaboration with family, educating the family, getting the players together is very important. So that is definitely one of the goals that we try to take care of almost immediately. And then we help them prepare for the future. And that's again where that team approach comes into play. So our licensed clinical social worker really talks to the family about the future. Okay. Talks about advanced care planning. And sometimes it's referred to as ACP. And individuals will call and say, somebody told me about ACP. What is that? ACP stands for advanced care planning. And it sounds like when we're using palliative care and starting this so much earlier in our journey that we've got so much longer a runway to do the planning. Oh, absolutely. Okay, but what is the planning? I don't understand. So advanced care planning is the opportunity to sit down with the patient, the caregiver and the family. And we talk about things like a healthcare surrogate. When you can no longer answer for yourself or let us know what your needs are, you have designated someone to make those decisions for you. Yeah. And you literally, it's a document. We happen to utilize at a vow. We use a really wonderful document called the five wishes. And it really consists of things that you may take for granted, like simple things like account numbers, passwords, you know, things like that that tend to get tossed aside or stuffed in a drawer. And what, and when you need them at the last minute, you can't find them. So it's on that document. It talks about who you want to make your decisions. And it's a great idea to have a primary and a secondary. Well, that's a good idea. Sure. You should always have a secondary because life happens and things happen, right? Do you want artificial nutrition at the end of your life? Do you want to have artificial ventilation? Any music that you want to play at your celebration of life or at your funeral? Do you want to be buried? Do you want to be cremated? Now, these are not dinner conversations. No, they're not. Right? They're not. When they're facilitated by a third person like narrator, like our licensed clinical social worker, you know, people start to laugh and they start doing these life reviews and they, and they laugh and they joke about it. And, you know, you can even put in your five wishes who you don't want at your funeral. But these are important conversations to have while your loved one, especially with dementia is able to have them. Yeah. Because you want to listen to them. It's their voice that you want to listen to. So advanced care planning really is multifaceted. It's talking about some of the financial things. It's talking about some of your end of life medical planning. It's talking about funeral arrangements. And then, then you put it away. You make sure your attorney or accountant, of course, takes a look at it. You make sure there's a copy of it. Give it to your caregivers or your loved ones and then put it away for now. Well, there's a lot of peace of mind with it. That you're not going to be coming to a medical crisis time and not have considered some of these things. So you've got a long pathway for it. And I also say it's a gift. It is a wonderful gift for a patient to give their family is I've done this. I've taken care of this for you. There's nothing worse than seeing patients at the end or families at the end of someone's journey that didn't do this. One of the things I think about what you're talking about that's so helpful is, you know, as a caregiver, I didn't know what it was. I didn't know. And a lot of the reason Nancy and I are doing this podcast is we're giving answers to questions people don't know. And what I'm hearing so much of him palliative care is you're giving answers early in the journey to questions people don't know and that they don't want to have to be blindsided by later in the journey when they all of a sudden have to make a decision, especially something that's an emotional decision or there's some complexity into it. So all of this is just sounding more and more valuable as we as we move on. It is not a one visit task. So we may have the social worker will start the conversation. Now we know they're not easy. And we will give the patient and or caregiver this five wishes book or just some information. If they're a veteran, we have specific information for veterans with dementia. We have there's a very specific documentation for a Native American with dementia. So we give the proper documentation to whomever needs it. And then we say, we're going to see you again in 30 days. Come back next month, speak to your family, speak to interested parties, you know, speak to the extended family and bring it back. And we're going to talk about it again. We don't expect it to be done in one visit. We don't expect it to be done in the first few months. We understand it's difficult. But you know what's happening here that I'm really liking is often if it's a parent. This is a difficult conversation for a child to have with a parent. You know, let's talk about your end of life planning and let's talk about, you know, all of these things that we're talking about in your advanced care plan. You know, your initial in conversation that needs to happen chances are that the child knows it needs to happen, but it's difficult for them to be the one to bring it up. So if palliative care is bringing it up and we have a booklet. Great. Now let's go through the booklet because we need to have made these decisions or at least talked about these things before we show up for our next visit. So I love it. Yeah. And it's something that can change. So keep in mind this is not a document that can change. It is not written in stone and we understand, you know, change. What we notice here in Southwest Florida and I'm sure in many other parts of the world is that we have multiple generations of families. So we sometimes have, you know, his hers and our children. Right. Sometimes there are no children, but we have extended family that have stepped up. We have nieces and nephews and cousins and aunts and uncles. So the family unit in and of itself is very different and very personal to everyone. And it's important to get their collaboration. It's important that we're all on the same page early. That's very good. So we've talked about what palliative care is how to call palliative care in. And we've talked about the goals of palliative care. How about we learn what else we need to know what for tip four, what else do we need to know. So here I think is the biggest tip. Your palliative care patient is not going to look sick. Most of them are they are working individuals. They are raising families. You know, they are very valuable members of our community that are struggling with a life limiting diagnosis. And our job is to help them live their life. You know, that is our goal. Again, going back to earlier, the better the earlier we get the patient, the longer amount of time my team has to bond with this family to build these relationships of trust and respect and dignity. They get to know us so well. They get to know our nurse navigator so well. Part of his role is strictly to make sure that the patient and caregiver. So let's not forget our caregiver is just as important as our patient. Thank you. Is getting the resources he or she needs in our community. There are tons of resources in the community that people just don't know about. And that is his role. That is his job is to make sure that they do that. People will ask, well, how's it paid for? I don't have insurance or. I'm strict in my finances. I don't have a lot of money. How, you know, how does this work Medicare? It's covered under Medicare Part B like boy, like any other doctor's office visit would be covered. Also private insurances do cover palliative care. Medicaid covers palliative care. But we also never want a patient not to come to us because they don't have the ability to pay. So we do offer financial assistance and we have sliding scales and we will work something out. It is so important to us at a vow to build these relationships in the community. That we will help them any way that we can. One of the other things you've talked about that is so powerful in my heart is the children who are involved. Yeah, the dementia experience and how palliative care supports them. Yes, a little bit about that. Sure. So what we're seeing now are multi-generational families living under one roof. So sometimes you have adult children taking care of their parents who may or, you know, have dementia or any other life-limiting diagnosis. But specifically dementia, I think is where is so important for children. They don't understand the dementia journey. They don't understand why grandpa knew my name this morning, but why is he calling my mom's name this afternoon and, you know, why, why they, because grandma trying to escape from the house, you know, every day. So it's so important to include the children. So we have a wonderful program at a vow called the Vow Kids and we collaborate with some memory care centers to do some seminars. We're doing one this in August in a couple of weeks. And it's focused on bringing all generations together under one roof and really learning how to communicate and helping those children understand. They can understand. So telling them, oh, that's just how it is. Or, you know, that's not the answer. You need to educate them and they will understand and they'll become a part again of that family to help support the caregiver. That's so powerful. Wow. Anything else? Um, let's see. I think again, let's go back to that collaboration. Let's go back to being an advocate. Mm hmm. You know, speak up for yourself. Speak up for your loved one. You are their best advocate. If something is a burden for you, we need to know. Don't let it boil over. You know, it's very important to speak your mind. Be the advocate for your patient. Be the advocate for yourself. And I think it's so great from what you're explaining about the palliative care is you're the person to go to with when you've got a question that you just really don't know. You don't have to try to get an appointment with the doctor necessarily. There are things that you would obviously go to the doctor for, but for some of the other things that come up, you're a source of information and obviously a tremendous amount of peace of mind on the journey. So that, you know, and I think from the amount of health that we have, reduction of stress is completely significant with that. So there's a lot to that. So how do, how do listeners find you? You know, we're, we know we're in Southwest Florida and a vow is here in Southwest Florida and our listeners are from around the world. How do they find you if they're in this area? And then also how do they find out about palliative care? Sure. So if you are in the Southwest Florida area or even out of the area, you can look at our website, which is a vowcares.org. We have a wonderful landing page that says dementia care on it. We also have a another page on our website that's just palliative care. And it really explains all the modalities or all the services that are related to the palliative care program. You can look up online, of course, in the area you live in to find your local palliative care department. I would definitely reach out to some of the memory care centers. If you are in the area and you go onto our website, again, it's a vowcareswithanest.org. You will see a contact us button and you can fill out that form if you have any questions. And we'll be more than happy to help answer and help navigate for you. But you really do need to do some investigating. Really, if I can really bat one thing home today, it would be speak up for yourself, be that advocate, educate yourself and your family, and you will be a better caregiver. And you will be a happier caregiver. And that's the truth. Don, I did one more thing I wanted to, I just mentioned to the listeners. I did some research before this episode and I found when I Google palliative care, some of the organizations have the word hospice at the end. And so don't be, don't assume that they don't have palliative care because it says something hospice. A lot of organizations use the word hospice, but they also have palliative care as a service that they provide. So just tell the listeners if you, if you Google your local area and you see some Google palliative care, Google palliative care. Exactly. And that's very much what a vowel is a vowel has both palliative and hospice care. Right. So just don't be, but then some of the names of the organizations are something hospice, even though they also have palliative care. So don't be turned off by the word hospice. Don't be afraid of the word hospice. And oftentimes they'll say to us, oh, you're, you're a vowel. No, I'm not ready for hospice. Yeah. No, we're not hospice. So there are a lot of myths about hospice that we're all aware of. But if you are unsure, call your local hospice provider. If it doesn't say palliative care and ask them, do you provide palliative care or can you give me a resource? Because to your point, Nancy, many of them do have both services. That's a great point. Yeah. Thank you. Well, I can't tell you how much I appreciate you coming today. This has been an amazing eye opening conversation. And hopefully our listeners will be in a position to leverage what Sue and I unfortunately did not get the opportunity to leverage because we just didn't understand what was available. So this is an awesome, awesome resource. And I can't tell you how much we appreciate you helping support our listeners getting the right care that they need both for the person living with dementia as well as for the caregiver themselves and their families. Yeah. Thank you very much. And having me is my honor to talk about something that we are so passionate about here in Collier County. Well, I appreciate it. Today we shared four tips. First is to understand what palliative care even is. Second, call palliative care. Find a palliative care organization and call them in and understand how you can participate. Three, understand the goals of palliative care. And four, learn what else you need to know about palliative care. And with those four tips, we'd like to invite you, if you have tips about how to leverage palliative care, please put those on our Facebook page or Instagram page. The links are in the show notes. Like with all of our podcasts, every episode has a matching blog. And those blogs share the exact same number as the podcast. So if you don't have to take notes, if you want to get a reminder for what we talked about in this podcast, just go to our website, the caregivers journey dot org. And look up the blog that has the same number as the podcast. Sue and I want to make sure that all of our listeners get the opportunity to leverage all the resources that are available to them. Because what Sue, we're all on this journey together. Yes, we are.
