When To Call In Hospice: Four Essential Tips / Alzheimer’s and Other Dementias

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 Do you know when to call hospice in? You might think you do, but do you really? Today, Sue and I are talking with Nancy Hirman and Brenda Kazaier about what is hospice and when and how to get hospice involved. We have four tips. Everyone, let's get started. 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 All right. One of the things we've learned through our journeys is that there are a lot of misconceptions about what hospice really is. Let's begin today with clarifying what is hospice. Brenda, would you share with us? Well, I think the misconception is that hospice is all about dying. And that's something we're all going to do, whether there's hospice present or not. Reality is hospice is more about living the best you can until you die. And having that time period at end of life to feel the best you can, have time to say your goodbyes. And what we have learned over time, and we'll go over it again, is that when people feel better, they actually live a bit longer. So the misconception is you have to wait until somebody is actually dying. And what we really want to wait for is when they have approximately six months or less to live, that's when hospice has the most benefit and power and helps you live the best you can until you die. I think a lot of people are really, they're really surprised when we say you could be on hospice for six months. But it's really true. We have patients actually that have lived for years on hospice care. As long as they have a terminal problem and they are very slowly declining and they require care, they're appropriate for hospice. Thank you for sharing that and clearing it up. And Nancy, would you please talk more in detail about the hospice care plan? It's such a fabulous offering. Well, several years ago, Brent and I, during COVID, were realizing that what really is needed at the bedside, we still are hospice nurses that work at the bedside full time, along with this business. And what we find is that people need to know exactly what to do in the moment. And as hospice nurses, we are consultants, as are the rest of the team. We're not there from one day. We're not there from hour to hour. And so at two in the morning, how do they know what to do? So we wrote this booklet, The Hospice Care Plan, A Path to Comfort, because comfort is really our goal at all times. And it really goes through all of the steps that allow a family or a caregiver to understand what they can do in the moment to take care of their patient and allow them to be comfortable. For instance, if they're having trouble with urinating, they can go to the page that talks about bladder care and they can find out what they can do in the moment. At two in the morning, if they need a brief change, because they've had a bowel movement, they can walk through it in writing, or they can also go to our YouTube site, The Hospice Care Plan. At one point, Brenda and I looked at each other and realized, oh my gosh, people aren't going to read all this. A picture is worth a thousand words. We need to get some videos going. And so we now have over 400 videos that go directly to all of the types of information that's needed for hospice care, not just the actual hands-on care, but what it's like to be a caregiver. How do you get to be a volunteer? A lot of information. And we talk about stories that come up for us. So we really invite you all to get a booklet at the hospicecareplan.com or to go to our YouTube site for any videos or information that will help you take care of your loved one. And you know, episode 13, for those who haven't listened to it, or who have listened to it, you'll find a link to one of their videos, YouTube videos, in that episode. And that's how we discovered these ladies, because we were looking for some information we could share with our listeners. And we were frustrated because we couldn't find detailed information, and we found you, and you had very detailed information. And we are incredibly loyal to what you're doing, because you've shown us that it really does work. Thank you. Well, should we move on to the first tip? I think we're ready. Let's do it. Yeah, our first tip is that when you are next to a patient, a family member who looks like they're changing, it's really, really important to look closely at them. You're not quite sure what's going on, but you've noticed that after the, over the last two or three months, things are slipping. So it's important to recognize what things are slipping. And what we use is called a frailty scale. And you will be able to see this if you're on your video screen, but otherwise, we'll give you some tips right now verbally of what the frailty scale is. We use it every day in hospice care to help us paint a picture to Medicare to prove that this patient is eligible for Medicare based on the criteria. And so what we're looking at are the really simple things that everyone looks at. Is someone losing weight? Can they feed themselves now? Maybe they could walk all the way to the mailbox last week, and they can only get to the front door now. Maybe they can't, they're in a wheelchair, and they can barely be moved from the bed to the wheelchair. So you're looking at all of the activities of daily living, and you're making notes to see what's changed in the last three months. And the frailty scale will help you delineate all those different things to look at and give credence to all your observations. And another big thing to be looking for is increase in anxiety that is causing behaviors that are uncomfortable for the patient, for the family, and you're seeing those mental changes speaking less words. Those are real indications of changes, and that hospice is probably time for hospice. And of course, a lot of your listeners are people who have patients or family members with dementia. So that's a really good point, Brenda. And we, agitation changes in their behavior is very important. And it's one of the things that I'm going to say right now that hospice is so skilled at. We are experts at symptom management. And so that's why when we get on hospice care, we can look at some of those changes and help to smooth them out because we can look at the symptoms and offer options. So we're going to jump towards tip number two, which is, and it may sound unusual, but you need to start documenting when you're seeing these changes on the calendar, write down what their weight is and note if it's decreasing or anything. Keep a note on your iPhone of like the changes that you're seeing so that when you can go to your primary care provider and say, I'm seeing these changes, well, what changes? Well, they're losing weight. How much? Well, this much. They're only speaking three or four words are not recognizing other family members because the reality is a lot of most primary care providers. They don't know what the hospice criteria is. A lot of them think that hospice is they have the same misconception that hospice is about when people are really starting to actively die. And it's not. And so they so many people qualify for hospice before. And the problem is if you wait too long, then they are having all these symptoms of increasing anxiety. They really could use some symptom management and they're not going to get those if they don't want to hospice earlier rather than later. Just this morning, I was in a memory care unit and I admitted this lovely man and I've known him from the memory care for a couple of years now. And three months ago, I said to his daughter, because I saw her and passing, you know, have you thought about hospice? He's he's showing changes and she she wasn't ready for that conversation. And I couldn't, you know, push it too far with her. Well, sure enough, he fell hit his head had a bleed in his brain went to the hospital and came home on hospice and now he's dying. So and had we put him on three months ago, we could have avoided a lot of those issues and he could have had increased quality of life for his last remaining time. So and also just having documenting that those changes gives you a baseline so that you can have that conversation with that primary provider. Yeah, and I made that mistake with my husband. I my father had been on hospice and when he had Parkinson's and it was clear to me that there was so much value in it beyond he was on it early enough that we'd fortunately someone told us to call and get him on it. And so I realized it wasn't end of life. So my husband started to lose a lot of weight and I call the doctor actually did not have too much problem getting him an evaluation and got him an evaluation. But when I did, I said he's lost a lot of weight and they said, Well, how much like how much I said, Well, we haven't weighed him in like two years. We don't know. He is skinny compared to what he was a couple of months ago and they're like, you know, we need we really have to have something documented. And so it took us a little bit longer to actually get him on hospice than it should have because he really did lose a lot of weight and we really weren't documented. So my suggestion is looking at that frailty scale. Is that right? Yeah. Look at the frailty scale is once you see those things like are they falling start documenting how often they fall if they're losing weight. How much what do they weigh now? How much are they losing weight? Look at that and use those as things to put in your journal like Brenda said and just track those things now before you even need to. And I think I think that point is one of the most important lessons that I have learned is do it early. I mean, it's it's like your your loved one may not qualify yet for hospice. However, you're you're going to be able to when they do qualify get them under hospice earlier at the right time because you're helping them thrive. So if you're starting to record these things and use that booklet now and be know what to look for, that's another part of it is you've laid it all out. You know what to look for and you're doing it sooner that then when they do start having these changes. It allows the doctor to be able to to support getting you into the hospice recommendation a lot sooner and a lot more smoothly. Yeah, and another key that's really important because you it's not uncommon for you to get pushback from a primary provider saying hey, they're not dying when they're not ready for hospice yet. But you can say, well, I think they are. I don't know. Let's get any evaluation. But most importantly, my goal for my loved one is to never go to the hospital again. Yeah, good point. I don't want them to have to go to the hospital and have to to determine that hospice is appropriate. I want to avoid that stuff because sending a dementia patient to the hospital is not a kind thing to do. It's a distressing disaster. I do know that and it is not. So talk about your goals of care if they if and ask yourself what are your goals of care? Do I ever want them to go to the hospital again? Yeah. And so while you're gathering your information ahead of time, as we said, start early, one of the other pieces of homework that you can do during that early time would be tip number three. And that's find your own hospice organization. Do some research in your neighborhood. Generally, almost every city now has more than one choice for hospice care. And you need to ask around and find out who's had experience, which hospice organizations fit the needs of your patient and find out how they how they provide their care. Who's on the team? How long does it take to get somebody in there after you get an evaluation? That's all the homework that would be really important because you are legally must be offered any hospice that is available in your community and you are allowed as the loved one or the patient to make the decision of who you're inviting in as your hospice organization. So it's really important to do a little bit of homework ahead of time. And then the other thing that you want to do is get what while you're doing your own documentation. Ask friends, ask family, ask caregivers, all the people who see your loved one, the patient regularly, find out what they've seen because everybody sees something differently depending on how often you visit what time of day you even visit. There's a lot of information that can be gleaned and the more information that you have on a daily basis of how that patient is is functioning. It's going to help you get that patient evaluated for hospice care. That's a really valuable point. And I really like the fact that you talked about get other lenses. We tend to see our loved one when we're with them day in and day out. We may not see something that really stands out to someone else just because it's been so gradual for us. Right. I had a patient, the wife got a hold of the copy of the Care Plan booklet in the community and she took it into her primary providers and said, I want this for my husband. It's too good for her. And it was educational for everybody and hospice was started based on her reading up. That's wonderful. It's a great recommendation. Brenda, why don't you go continue on about that? How do you get the hospital's evaluation? What do you do next? So tip number four, right? So how do you get a hospice evaluation? You simply ask your primary provider, I think it's time for hospice. Can we have a hospice and admission or an evaluation? And you may meet some resistance. You just say, well, at least we'll get a baseline because it takes two physicians, your primary provider and the hospice doctor. The referral or the physician's order has to come from the primary provider or another doctor and saying, okay, we want them assessed for hospice. And then it's the hospice doctor's job to look at all the Medicare requirements and compare them to what is going on with this patient. And then you can see that the patient is going up to this patient and say, do they qualify? Do they not qualify? And it never hurts to ask for hospice too soon because then at least you have a baseline of what is needed. And so, and always remember, go back to the purpose of hospice is to live the best we can. So people think, and sometimes people hesitate to ask for hospice evaluation. They think, well, they think I'm ready for my husband to die or my husband to die. I'm not. And what you're really asking for is to help them to do the best they can until they die. So don't hesitate to ask. And if it's too early, they'll tell you. And now we have a baseline. Brenda and I do evaluations for hospice care really regularly. And frankly, we can sell just about anybody on hospice if they meet the criteria. So really skilled at looking at that patient, gathering the information using that frailty scale. And as soon as we see that the patient is appropriate, then we can be the detectives to find all the details to help that physician say, yes, indeed, that patient. And one of the things that we have also done on our YouTube site is put out a series of videos about the actual diagnosis criteria, all the major diagnosis, heart disease, dementia, cold, stroke, renal disease. If you go there, you can actually see what the Medicare guidelines are, which also helps you tell the physician, my dad, he's got heart disease, and he's got a really bad ejection fraction. You can go to the criteria, use them to help you sell your physician. And that's what we do when we do the evaluation. Then we turn to our own medical doctor. We can bring all the material together and we talk with our medical doctor and she lets Medicare know that, yes, indeed, that patient meets criteria. And you don't have to know all this. You just have to be this squeaky wheel saying, I want to assess again. Yes. Yes. And I think the part that you're talking about with that education, because we don't necessarily know. So the fact that you've already done the heavy lifting, you've already put the information in it so easily consumable and that you've got the booklet, one of the things from the experience that I had both with my dad and my husband is that we had moved them into memory care communities. And we got an assessment early on. There were hospice volunteers who were in there hospice nurses actually who were in both of the communities. And we asked for assessments with my dad. He was assessed as hospice qualified when he came into memory care. My dad, my husband, however, he didn't. We went through the assessment. So we had that valuable baseline. And they said he doesn't qualify. And here's why not. And here are the things to look for. So we knew what to be looking for ahead of time. And I think your booklet is just so much more valuable even than that because I didn't have any of those pieces. I had what they had shared, but it really does help us to know. And truly, when we moved my husband on hospice, it did help him thrive. I would like to add something to Brenda's squeaky wheel too, because I think that's important. For my husband, we were able to, we had no problem getting his primary care physician to give him a referral to hospice. But for my father-in-law, when I went in and said I want a hospice referral, they really pushed back. And then they drug their feet and drug their feet. And I had to actually eventually go into the office and let them straighten the eyes and say, I want a hospice referral. I want him to be evaluated. And they were like, well, do you understand what that means? And I'm not sure he's ready. And I said, look, give him a hospital referral so I can get an evaluation. And, but I had to really be the squeaky wheel. So I just encourage people, if you feel like it's, it's time, push it. Because the worst thing that's going to happen is hospice is going to come in and do a baseline. And then they're going to say not now, because you know, it's going to be right time eventually, right? We're talking about dementia. Well, it's not now, but, but then you do have that baseline. It's so helpful. I really appreciate that you mentioned our booklet again. So I want to talk a little bit about it. The booklet, the hospice care plan and path for comfort. Brenda and I would love to see this at the bedside of every patient that's ever admitted to hospice. Our local agency that we work for, fortunately, has seen the value of it and it comes in the admission packet. So from the very first day that that patient is admitted to hospice, this workbook is started to be utilized by the hospital. It's individualized by the hospice team. It's individualized for their care and the families have it right away. So it shows who's on the team. There's ways to handle medications. And the way the booklet is organized allows for a QR code that will take the person directly to our YouTube site for the particular problem that is being addressed. This booklet has all of the major symptoms, anxiety, bladder control, bowel management, pain, anything that anxiety, anything that comes up in the end of life. We've addressed it and it's organized so that there is a goal. We know exactly what we're trying to achieve. The important information that is needed to know in that particular area. What you can do right now to take care of that pain, what can you do? And then your hospice team has a place to individualize the care plan. So if I was the nurse, I might be saying that patient needs to have Tylenol three times a day or maybe we're on to morphine. But this is how we individualize the care. We would love to have this booklet. So if you have a family member who needs it, you can get it individually at our website, the hospicecareplan.com. And you might even show it to your local hospices so that more people could take advantage of it. And it really helps us as nurses because it's impossible to write down everything that people need to know. What we want to write down is what's really important just for them, individualize that plan of care. Well, and it really gets back to what you said in the beginning, Brenda, about what hospice really is. Yeah. And so our motto, Nancy and I have been nurses long enough, we have a motto and that is that care is the treatment. And following these guidelines in this book helps you provide that care. And it can be very overwhelming. So I'm going to give you another tip, which is the four C's. If you're unsure what's going on with your loved one, you just stand back and you look at them. Are they calm? Are they comfortable? Are they clean? And are they cared for? And if one of those things isn't working, something's wrong, get some help, ask for a hospice evaluation. But you don't have to know it all. You need to get help to meet those four C's. And as Brenda said, care is the bottom of the pyramid of the Maslow Triangle of Care. If they are taken care of first, no matter what, it will take care of 90% of their medications are the cream of the crop. That's what we add on top. But the ultimate care every moment is what really allows for a patient to live a dignified and comfortable end of life experience. That is so beautiful. So beautiful. We are so fortunate that you're sharing your messages with us. Thank you. So we're just going to quickly review the four tips. The first one is assess the person who needs to be on the hospice. Are they changing? Are they speaking less, eating less, losing weight, getting anxious, not able to gather a chair anymore? And if you just have a gut feeling of, you know, what's going on here? Start making a journal. Start writing those things down so you can take that information to your care provider. That's tip number two is document. And then find that hospice organization in your community that you would really choose when they're ready for hospice. Make sure that you know who you want to choose. And then you're going to, again, ask for that hospice evaluation. Do it as soon as possible. As both of you have indicated in both of your life experiences, it was good to get that information early. Even if the patient doesn't meet hospice criteria right now, they will in the future. And then you'll have something to start with. We all will. Yeah, exactly. You guys, thank you so much for coming today. It has been absolutely incredible. I knew this was going to be a wonderful episode because this is something that we get asked a lot when to bring hospice in. Right. And you guys have done a great job today helping us understand what hospice really is and when and how to get hospice involved. So unbelievable. Thank you. Well, I think the other thing that you've done is you've got such a valuable resource that's so readily accessible to people. I know I'm going to get that and use it as a lens for the things that I do. It's so practical. And the fact that you're connecting people with additional information that the kind of information you're sharing would have been very valuable for me. And now I'll have it for the future. So for our listeners, I mean, we're talking about practical tips and what you're sharing is really very practical. So thank you. And so well organized in the booklet. It's amazing. So no question. We're so happy that you invited us because we, as you can tell, are so passionate about what we do. And we want good hospice care for everyone. Yes. Well, it shows. Thank you. We're fortunate that you are passionate. And so are our listeners. Yes. So for our listeners, if you have tips that you know of when to bring hospice in, please share them on our Facebook page or our Instagram page. We'd love for other people to be able to hear what your tips are. If you like this podcast, please follow it. Subscribe to it. Rate it and review it. That would be wonderful. We'd really appreciate it. We'd appreciate it. And the links that you had mentioned, we're going to make sure are in the show notes so that they can get access to the booklet and access to the scale, to the book and to your valuable, valuable YouTube videos. They really are spectacular. Yeah. To the YouTube channel and to your and to the website. So all that will be in the show notes, of course. And for every podcast episode, we have the same closing. Yep. We're all on this journey together.