Additional Resources Mentioned
Takeaways
Tip 1: Understand What Palliative Care Actually Is
The first step is clearing up common misconceptions about palliative care.
Palliative care is a holistic approach to a life-limiting disease. This includes dementia — which is indeed a life-limiting disease.
The key difference between palliative care and hospice care:
- Palliative care patients are at the beginning of their journey and are still seeking aggressive, curative treatment while seeing all their providers and specialists
- Hospice care patients are generally at the end of their journey, no longer seeking aggressive treatment, and focusing on comfort care.
Palliative care is an additional supportive layer of care that works collaboratively with all your existing medical providers. Most importantly, palliative care focuses heavily on the caregiver.
Tip 2: Call Palliative Care In — Here’s How
Many caregivers don’t realize how accessible palliative care is or when to call it in. The answer is simple: the earlier, the better.
Tip 3: Understand the Goals of Palliative Care
Palliative care has specific, comprehensive goals that address both immediate and long-term needs.
Primary goals include:
Relieving physical symptoms first
Supporting the caregiver and family
Education and collaboration
Advanced care planning (ACP). This crucial component involves sitting down with the patient, caregiver, and family to discuss important decisions while your loved one can still participate in these conversations.
Tip 4: What Else You Need to Know About Palliative Care
There are several important aspects of palliative care that many people don’t realize.
Your loved one won’t look sick. The goal is to help them live their life fully.
Early intervention builds stronger relationships.
The nurse navigator’s role is specifically to connect you with community resources you might not know about.
Read More in This Blog here
Full Episode Transcript
Nancy Treaster
Sue and I both wish we had understood what palliative care is and how to leverage it. Yes, we do. So today we are talking with Dawn Kolderman. She’s a registered nurse and Senior Clinical Director of Palliative Care Services at Aval. And we’re talking about just that. What is palliative care and when should you call it in? We’re sharing four tips.
Sue Ryan
We sure do.
Sue Ryan
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. 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?
Dawn Kolderman
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. 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, you know, 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? Yeah. And 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.
Sue
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?
Dawn
That’s a great question, Sue, because people often will use it incorrectly. 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, you know, towards the end of their life. And that is the main difference between the two.
Sue
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 specialists and other medical doctors that they’re working with, it’s not an either or.
Dawn
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 you know, medical level of care that you’re in.
Nancy Treaster
And you told us a little bit earlier, Dawn, when we were discussing before the podcast, that palliative care isn’t just focused on the person living with dementia.
Dawn
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. It’s focused on caregiver burden and stress and how we can help them help themselves to take care of their loved one. Thank you. And that takes a team. It’s not just one individual.
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 us in existential or spiritual issues that are going on.
Nancy Treaster
You know, all of that sounds like something I missed out on. Sue, you as well?
Sue
Completely. When I first talked with Dawn 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.
Nancy Treaster
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.
Dawn
So we really want to see patients very early in their diagnoses. So once the patient is seeing, neurologist for a dementia patient, or maybe they’re not even seeing a neurologist yet, but their primary care doctor and the caregivers together, their team has noticed that there’s been some changes, 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 offices, 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 Collier County for 43 years. They know that Avow is there for the community. So we do get quite a few self referrals almost daily, quite honestly. And again, earlier the better.
Nancy Treaster
Hey, Dawn, 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?
Dawn
Yes and no. Many hospice organizations also have palliative care.
Nancy Treaster
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.
Dawn
Yes, absolutely. You can look up in your area, 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 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. 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. A lot of palliative care providers do the exact same thing for the sole purpose of education.
Sue
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 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.
Sue Ryan
Let’s talk about in tip three, when to call in palliative care and what the goals of palliative care are. And so we recognize when to start on that journey.
Dawn
Sure. So early in the diagnosis, of course, is the best. Upon the first initial visit, about 70 % of our patients are able to visit us in our clinic. have an on-site clinic, which is wonderful. And they, 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 residence, if they live in a facility, and we will meet them there if they’re unable to come to us.
But 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?
Sue
Well, 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 diagnoses. Dementia, of course, is one of them. There are 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 hears 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.
Dawn
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. Our licensed clinical social worker really talks to the family about the future. Okay. Talks about advanced care planning. 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.
Nancy Treaster
Okay, but what is the planning? I don’t understand. What am I planning?
Dawn
Sure. So advanced care planning, 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. And you literally, it’s a document we happen to utilize at Avao. We use a really wonderful document called the five wishes.
Dawn
And it is a booklet and it really consists of things that you may take for granted, like simple things like account numbers, passwords, 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. 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? And then it gets down to things like, 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, right? They’re not. But when they’re facilitated by a third person narrator, like our licensed clinical social worker, you know, people start to laugh and they start doing these life reviews 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 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, 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. I’ve done this. I’ve taken care of this for you. There’s nothing worse than seeing patients at the end of 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, 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 in 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 move on. It is. And it’s not a one, I’m sorry, it is not a one visit task. 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.
If they’re a veteran, we have specific information for veterans with dementia. There’s 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, 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.
Nancy Treaster
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 initiative and conversation that needs to happen, chances are 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.
Dawn
Yeah. And it’s something that can change. So keep in mind, this is not a document that can’t 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.
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.
Nancy Treaster
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? For tip four, what else do we need to know?
Dawn
Sure. Okay. So here I think is the biggest tip. Your palliative care patient is not going to look sick. Most of them 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, 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 with my finances. I don’t have a lot of money. 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 Avow to build these relationships in the community that we will help them any way that we can.
Sue
One of the other things you’ve talked about that is so powerful in my heart is the children who are involved in the dementia experience and how palliative care supports them. Talk a little bit about that.
Dawn
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 have dementia or any other life-limiting diagnosis. But specifically dementia, think, is where it’s 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? Why are they, of course, grandma trying to escape from the house every day? It’s so important to include the children. So we have a wonderful program at Aval called Aval Kids, and we collaborate with some memory care centers to do some seminars. We’re doing one 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, 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.
Sue
So powerful. Wow. Anything else?
Dawn
Let’s see, I think again, let’s go back to that collaboration. Let’s go back to being an advocate. 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 with when we’ve got a question that you just really don’t know. You don’t necessarily have to try to get an appointment with the doctor. 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. that, you know, and I think from the amount of health that we have, reduction of stress is completely significant with that.
Sue
There’s a lot to that. How do listeners find you?
Dawn
We know we’re in Southwest Florida and Avow 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 Southwest Florida area or even out of the area, you can look at our website, which is avowcares.org. We have a wonderful landing page that says Dementia Care on it.
We also have 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 avowcares.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 bring one thing home today, it would be to 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.
Nancy Treaster
Isn’t that the truth? Dawn, one more thing I wanted to mention 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 hospice in their name. A lot of organizations use the word hospice, but they also have palliative care as a service that they provide. So just to let our listeners know, you Google your local area and palliative care, it’s got an ‘i’ in it by the way.
Dawn
And that’s very much what Avow is. Avow has both palliative and hospice care.
Nancy Treaster
Right, so just don’t be confused if some of the names of the organizations are ‘something’ hospice, even though they also have palliative care.
Dawn
Don’t be turned off by the word hospice. Don’t be afraid of the word hospice. And oftentimes they’ll say to us, you’re, you’re Avow. No, I’m not ready for hospice. Yeah. No, we’re not just hospice. There are a lot of myths about hospice that we’re all aware of. 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? Cause to your point, Nancy, many of them do have both services.
Sue
That’s a great point, yeah.
Nancy Treaster
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.
Sue
And their families. Thank you very much.
Dawn
Thank you for having me. It’s my honor to talk about something that we are so passionate about here in Collier County.
Nancy Treaster
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 obviously, what,
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, our 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 wanna…
Get a reminder for what we talked about in this podcast. Just go to our website, the caregiversjourney.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?
Sue Ryan and Dawn Kolderman
We’re all on this journey together.
Nancy Treaster
Yes, we are.
