Lewy Body Roller Coaster
Lewy Body Roller Coaster
Hospice 101 - Part One
A tough topic but one we all need to know about sooner than later.
Welcome Vangie Jones, a hospice nurse for 20 years as she shares with us all we need to know about hospice including the myth that it is only for the final days or weeks. This will be a three part recording since we had so many questions for Vangie that we all want to know
This episode provides valuable insights into hospice and palliative care for families dealing with Lewy Body Dementia. Vangie shares her expertise on navigating care options, eligibility criteria, funding, and the importance of early intervention.
• Differences between palliative care and hospice care
• Variability in palliative care access across states
• Understanding payment for hospice services
• Importance of early hospice involvement
• How families can request a hospice evaluation
• Tips for choosing the right hospice provider
Feel free to share the podcast link with your doctors and family as we seek to spread awareness and understanding about Lewy Body Dementia and its unique challenges.
A shout out to all our supporters including Tom Lawson, Dee C, Sue, Jane Wakeman, Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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Hello and welcome to our podcast about living on the Lewy Body Roller Coaster a podcast for Lewy Body Dementia patients and their families. Presented by Lewy Body patients and their families.
Speaker 2:You will hear firsthand the ups and downs and twists and turns of Lewy Body Dementia From families directly affected. We'll share our support and experiences on all things Lewy Body.
Speaker 1:We're your hosts, Linda and Curry. I have a loved one with Lewy Body Dementia.
Speaker 2:And I am living with Lewy Body Dementia. Let's get started.
Speaker 3:Welcome back podcast family.
Speaker 2:Yes, welcome back y'all.
Speaker 3:And we just want to keep giving shout outs everybody for being patient. When we don't, when an episode doesn't drop on a wednesday, um, we've been good at getting them out every week. It's just sometimes, you know, life gets in the way, but I think we've been good the past few weeks yeah, knock on wood, yeah.
Speaker 2:So thank you all for being so patient and supportive as we try to get these things out on time.
Speaker 3:We we really appreciate you yeah, and before we start the episode, we just remind all of our listeners that it's important to us that you all and the medical community hears from those affected with the disease. So please feel free to share the podcast link with your doctors and family because them hearing it from the people, with Louie and their caregivers, really I think it will help, especially if you have anybody in denial that that could really help out. So feel free to share that. And I believe we posted the QR code on their announcements. I don't know if it's under announcements. We have to check. It is yeah, so that's that's just, or you tech savvy people, you can use the QR code and get to all the episodes.
Speaker 2:Yeah. Also, I want to remind you all that if you'd like to be a guest and share your story in hopes of helping others, please contact Linda Zapula or myself through Facebook Messenger or through our email, which is louisbodyrollercoaster at gmailcom. We'd love to have you on the show.
Speaker 3:Yep, and we post to Patreon and GoFundMe links at the bottom of the episode notes and each link is also under the announcements on both pages. I say that with a question in my voice because I believe they are right. Curry, they are, yeah. So we're going to throw out a challenge to see if we can get five new supporters in the month of September.
Speaker 2:And, as a reminder, we're not giving medical advice, but we're just rather sharing our open and honest feelings and thoughts as we live with Lewy body dementia. So now for a shout out to some of our supporters We've got Matthew and Miriam Garacci, marsha Treffman, vicki Sederberg, ted Wankler and Karen Klink this week, and so let's get this week started.
Speaker 3:A few weeks ago I think it was by the time this episode you're listening to this episode. It was maybe three weeks ago. You all heard from Bonnie, who shared her experience losing her husband, randy, and how she relied on hospice to help. But she was asked by hospice people why did you wait so long to call us, was asked by hospice people, why did you wait so long to call us? So I knew we had to find someone in the hospice field to share with you all about the hospice experience and I sent her I don't know how many 10 pages of questions, maybe Because we posted in our groups what would you like to know and everybody just kept sending questions.
Speaker 3:So we're going to have somebody that's going to help us navigate a little.
Speaker 2:Yeah, this week we've got Vanjie and Vanjie welcome to the podcast, and can you tell us a little bit about yourself and your experience with hospice, what you do and all that good stuff?
Speaker 4:Yes, Corey, Thank you very much. My name is Vandy Jones and I'm a registered nurse. I'm also a certified holistic health coach and I spent 20 years working in hospice and I am retired from hospice now, but I'm still actively working with clients or patients who have lots of chronic diseases, and what I do now is I help them look at a holistic approach that complements what their physicians are doing to help improve their quality and their just their joy for life. I'm also a wife and a mother and I have five great beautiful grandchildren, so they keep me young or they may age me, I'm not exactly sure. Anyway, so even though I'm not active in hospice at the moment, I feel very qualified. It was the greatest joy and honor of my life to spend 20 years with probably thousands of clients and their families during that end-of-life process, which can be a very beautiful experience with hospital.
Speaker 2:Boy, we got a lot of questions for you. Yeah, we do, that's all right.
Speaker 4:Bring them on First of all.
Speaker 3:Can I borrow a couple grandkids, because you all know I want grandbabies and I'm sorry, andrew, that's my son. I love you, andrew, and I get it. I'm waiting for his brother. My son, who edits, doesn't want kids. He said I'm like oh, what I'm like, all right, I respect that. Now, anyway, I always like to, I'm, I'm, I'm open for being an adoptive grandma to anybody.
Speaker 4:There you go.
Speaker 3:So, as I said, I posted on the Facebook pages that we were going to have somebody come on. So let me start with one of the podcast, because a girl had lost her husband and she wanted to tell us about it and most of us were like what the heck is palliative care? So I think most people know palliative care and hospice, but can you tell us what the difference?
Speaker 4:is yes, because there is a difference. Because there is a difference Anybody can go under palliative care at any time that has an illness whether it's cancer or coronary artery disease or dementia, alzheimer's antibodies but they have symptoms or maybe they need financial assistance, or maybe they need psychosocial support or physical symptom management, and so that's what palliative care is, and nowadays it's much better. Years ago there were very few. Most hospital entities have palliative care disciplinary team approach. Hospice, on the other hand, is a multidisciplinary team that looks at end-of-life. Their goal is, of course, they're never going to hasten death. It's not going to happen. They're not going to even discuss it. They accept the dying process as a part of the life cycle and their goal is to provide quality care and provide that in a team approach, which is an entire team. That's not just for the patient but also for all the caregivers and children in that situation, and they follow that family, they provide that support, and so that's the difference in those two.
Speaker 3:Now I have a question for you. I moved from New Jersey to New Orleans area and in New Jersey my husband had palliative care where he was getting OT and PT and it was. We had to cut it down to one because it was just too much for him. But when we came down here I immediately called someone about getting him palliative care and they sent somebody out a few times and they said well, he's to the point where we can't take him to the next step. So palliative care is not an option anymore. And I'm like what? In New Jersey we were going to have it until we moved to hospice, but down here they're saying the analogy she said to me was it's like if somebody falls and breaks their hip and then we help them to get walking again. If somebody falls and breaks their hip and then we help them to get walking again, but with my husband's disease he's declining. So they said, because we really can't get him any better, we can't come out anymore.
Speaker 4:So that's been a very frustrating um, yeah, and I don't understand that, unless your palliative care was through a home health agency and home health guidelines state. If a patient cannot progress, they're done, but palliative care is all about meeting them where they're at and improving where they can and then keep them improving and improving where they can and then keep them improving. So I don't know if I wouldn't. What I would tell you is something I'm going to say again in this podcast that you need to contact at your state level the Hospice and Palliative Care Association for your state and then call the number. It'll be on. When you Google the number for your state is. Then call the number. It'll be on. When you google, the number for your state's going to come up and you can call and get a listing of palliative care centers in your state.
Speaker 3:You can also ask that person in this state what are, what are the guidelines for palliative care, because maybe is there different um from state to state yeah, I can tell you they are, because when we did that podcast, people were going and trying to get palliative care and it's and we're going to ask that later on about is hospice different from state to state? Because I can tell you, as a matter of fact, palliative care is which right I don't understand. I mean, I'm clearly experiencing that moving from one state to the other. If I would have known that I that would have been a factor of me not moving for sure I'm sure, vanjie.
Speaker 2:I think the number one thing people want to know, and and the most asked question when we start talking about hospice, is who pays for hospice in their services and is it different from state to state?
Speaker 4:so medicare, medicaid, private insurance all of those pay for hospice services. Okay, now, if someone is on Medicare or Medicaid, all their services under hospice are paid for all of it. If someone has private insurance, there may be a life amount that can be out. You know, like, okay, if you meet a million dollars, we're done, it can be out. You know, like okay, if you meet a million dollars, we're done. But generally nowadays, all private insurances do pick it up. There is also a fact that nobody can be denied hospice, regardless of their ability to pay, so they will find that funding somehow for a client. Now I recommend to make sure that happens, that what people look at is a Medicare certified hospice and a not-for-profit, both together, and so a lot of those may be hospital-based, but because of that thing so that if a patient because in my 20 years I've had plenty of patients that had no funding none they were homeless and we provided the same care and the same level, so it can be done For sure Is it different from state to state, which I think is what your next part of that is.
Speaker 4:And oh, and let me back up a minute, I'm so very sorry. So now we have a lot of Advantage Medicaid and so you still have to meet your Advantage's guidelines. So if you, that means you have to do their in-network situation. So if they have an in-network hospice, that's who you have to go with. It's not going to be a personal choice per se and you may still have some co-pays. That's up to them, and I'm that. They're so relatively new that all I can tell you is what I have myself investigated to see where they're at and it is supposed to. I'm telling this so that all of your Lewy Body family members know Advantage Medicare is to pay per hospice, exactly like Medicare standard hospice. So there should be no charging, just so they in case they need to fight that a little bit. Sometimes. You have to be your best own advocate.
Speaker 3:Oh, you're preaching to the choir sister.
Speaker 4:Yeah, yeah, I tell all my clients become advocates of your family and your own health.
Speaker 3:That's like a whole other tangent Medicare Advantage. Is that separate from just having Medicare? Is that an?
Speaker 4:additional plan. That is a specific type that they decided to choose. When they went on Medicare I was given that same advice. You know you want to, and so what it does is they offer a lot of other things that regular Medicare does not pay for, like dental glasses. They send you stuff but you have to see their doctors in their in-network and stuff like that, and once you're in that you can change to another advantage. But I don't know that you can go back to regular Medicare. But that's a personal choice. That's not my choice. And the other part of that question was is it different from state to state? Hospice is never. The hospice criteria is not different for state to state. But again, with being your best own advocate, some hospice agencies are not going to provide all of the same things that another would, okay. So I have a 10 point question I'm going to give everybody as we go through on how to find you a good hospice and the questions you need to be asking to advocate for yourself.
Speaker 3:So when we get to that question, we'll cover it. Okay, so is it governed by private, state or federal guidelines? That sounds like it is.
Speaker 4:Yes, medicare criteria, hospice, they're all surveyed by federal agencies and state agencies and Medicaid, of course, is a state agency and so, yes, they are all governed. They have to meet and one of the ways you can even check to see if this is a company you want to pursue is you can go to your state Costas and Palliative Care and you can look up and they have to document where there have been complaints and were they life-threatening and stuff, so you can kind of weed through the jungle. They have to meet some type of criteria and that's why you want to. Really, if it was my family and it will be one day, okay, so if it's my family, I want them to have an agency that is Medicare certified or at least state federally certified at some entity, so I know they're taking the proper care. I know that there are hoops. They've got a jump there to meet that.
Speaker 3:well, that's, that's good to know for sure. Now I read on the nihgov site that medicare reimburses for hospice when a doctor determines a patient has six months or less to live. Is that that true? With Lewy body, because we're all kind of like Cara and I had a little thing and speaking to the spouses in my group being, this disease is so unpredictable we don't. For instance, my girlfriend Bonnie, it was like what was it? 34 days ago Randy went to dinner in the movies with their son and her and now, two weeks ago he passed away and she didn't call hospice until it was the last two weeks and that's when they said why did you wait so long to call? So that's why we want to. We've heard things back and forth that some people have said as soon as you get the diagnosis you're eligible for hospice and from what I'm reading, it says the sooner we get hospice involved, the better it is for hospice and us it is.
Speaker 4:However, if you're going under the primary diagnosis, okay. Now, hospice can get around primary diagnosis, sometimes by putting them under a generalized thing. But when we do that, you lose the ability for hospice to pay for your Lewy Body Meds. Okay, so you want to fall under the and you come under, unfortunately, the big umbrella of Alzheimer's. You just do. And so for a Lewy body patient to be eligible for hospice, they have to meet on the FAST scale, which is a. It's called the Reisberg Functional Assessment Staging Scale and that's, if you want to look it up, r-e-i-s-b-e-r-g Functional Assessment Staging Scale. It's been used for years, guys, to kind of fit that mode, and it's a 16-item design to parallel the progress for depressive movement of a disease.
Speaker 4:The problem lies for Lewy bodies in the fact that they have to meet the criteria under this. They have to be equal to or greater than stage seven, and I'm going to tell you what stage seven involves in stage 7. And I'm going to tell you what stage 7 involves. So stage 7 is loss of speech, locomotion or consciousness. Stage 7A is the ability to speak is limited for up to 5 words. Stage 7B, they have to have all intellectual vocabulary lost. So you can see where we're going. You're really far down on this thing. They have to be non-ambulatory, unable to sit up independently, unable to smile, unable to hold their head up. Documentation has to prove some of that. However, they can meet the rest of that scale, which is easier because they're going to combine, because it has to become greater than 2 or equal to 7.
Speaker 4:So it could just be complaints of forgetting locations of objects. It could be okay. They've got two. Now let's say stage three Do they have decreased job functioning difficulty traveling from one situation or location to another? Stage four do they have decreased ability to perform complex tasks? Decreased ability to dress themselves, bathe themselves, put their clothes on properly, toilet independently, unable to bathe properly or maybe they've developed that fear of bathing that happens. Or inability to handle the mechanics of toileting, like they forget to flush or they forget to sometimes wipe properly. Incontinence, both fecal or urinary, loss of speech. So they can be combined. They can be some of these and some of these. So what I tell people is don't be discouraged by this, okay. So what I tell people is don't be discouraged by this, okay, because they're also going to look at what is this client's comorbidity? Do they have heart disease. Oftentimes you do have a lot of cardiovascular problems. Blood pressure issues Do they have? Maybe they have diabetes, Maybe they have some pressure stores. So there's lots of ways to add these up.
Speaker 3:Carrie, are you adding these up in your head? I am One of the people posted on her Facebook page that she was holding back tears from what Bonnie went through. But she was laughing because I was giving Carrie a talking to, because I'm like you need to get your wife to call.
Speaker 4:Well, here's the thing. Here's the lovely thing. I know you're going to come to this question. I know you're going to come to this question. This is really a nice time to reassure all of your members that you don't need to wait for a physician because a physician's not going to come in. Most of them not most physicians are not going to walk in your room and say it's time, it's time to get, you know, get hospice involved. They're not going to do that. Most physicians are uncomfortable talking about that phase and in 20 years, trust me, I can tell you this you don't need your physician. You can call the hospice you want to. You can ask them to come out to come do an evaluation. They'll get a doctor's order for the evaluation. They'll come out and make the assessment because they're the ones that are determining can they meet the criteria? You know can they meet it, and so, or you call your doctor and say I'd like to have just a hospice evaluation to see where we're at. It's a free evaluation.
Speaker 3:Yeah. So if somebody a girlfriend of mine in California called an agency, I think it was through a hospital and they came out and evaluated her husband and I just met him a couple weeks ago and I immediately said you need to get hospice in here. But because he could walk, walk, they said he wasn't eligible. And I'm like what because? And so we said to her you need to start calling other agencies. Like move away from the hospital and, like you said, call other agencies.
Speaker 4:Yeah ask your friends get a referral. Ask your church members, um, people you trust you know that's how you get a referral. Ask your church members, people you trust you know that's how you get a good referral. And but you know, yes, they would like them not to be completely walking independently. You know because then you really because with hospice you have to have a diagnosis that's considered life-threatening or six months or less. Now at the end of that six months they're reevaluated. But we've put in a lot of patients with hospice that we could see, because there's lots of things that affect any client with Alzheimer's, any kind of form of that. It could be blue bodies. Anytime there's an infection, it almost accelerates things for a little while and then they plateau. I'm sure you all have seen that. So if they've had any diagnosis and been treated for an infection a pulmonary infection that was bacterial, due to some slight aspiration, they didn't maybe know. They know urinary tract infections. Those are added to this ability to stage them and get them in.
Speaker 3:Now, sorry, I'm going to go back to my friend because I was really angry when she told me that hospice says they couldn't help her. So if I get her this list, this assessment list, yeah, she can get that right off the internet.
Speaker 3:Yeah, I'm going to post it as a link. What I'm hearing is print that out and you go through and you highlight the ones that your loved one meets, meets, and then say but just because he, because, just because he's walking, he, some people at louis body become not able to walk. And then there's some that just follow their loved ones around, like like you know, like like like right there all the time. So we're trying to get louis body out from underneath the alzheimer's umbrella because it's.
Speaker 4:It really needs to be removed.
Speaker 3:Yeah, yeah. That's why we're doing this. Podcast is like scream at the rooftops because it's not it. You can't put it on there.
Speaker 2:Totally different.
Speaker 3:Just yeah. So if you're listening, print out that list and we'll we'll put it on the Facebook pages too. And I just and we'll put it on the Facebook pages too. And we always tell everybody you got to be prepared, because I know you know, vandy, that people will Louis body show time. You'll go in and, like Curry's doing right now, curry always shows thankfully, curry, thank you for show timing when we record and then he crashes. It's just yeah. We got to work on getting it out from underneath that umbrella. We're appreciative that it's included, but we got to work on that.
Speaker 2:Vangie, along with that last question, who makes the determination when or to what extent hospice is available? You know we see our doctors every six months or so. Can a spouse make the call to a doctor and request hospice, or does it need to be the patient?
Speaker 4:No, no, it can always be the family member. No, the spouse can, the daughter can anybody, if the patient is in agreement, because this is their end of life and this is their story, so it's family-centered. But yes, they can call and say you know, I would just like to have a hospice eval. Would you refer us? I don't understand anything about that social worker that was talked about earlier, but I, you know, I would think she could get an eval a lot sooner, just by start moving those wheels herself. But yeah, anybody can talk to your doctor. He can refer.
Speaker 4:He's probably been using some types of hospice. Tell him be your advocate. Say I would like we might not meet criteria, but I would like him to come and make an assessment. So I know where we're at and you definitely can do that. Your doctor can order it. You could call hospice yourself, ask to speak to whoever's in charge of the intakes and ask them could you get a doctor's order to come, because they have a medical director that can give that order. It doesn't have to be your primary doctor. I have a medical director that can give that order. It doesn't have to be your primary doctor.
Speaker 3:So definitely, you can get an order for lots of ways. Hear that, curry. Yes, sorry, I'm not picking on you. I am not picking on you, I am. Yeah, you are. I am, yeah, you are I know, but I'm doing it because again sorry the teacher in me what I'm hearing Vandy tell us all is even getting it before you think you qualify. So at least you've been evaluated. So when then you take that next decline, they can come out and compare. Is that right, exactly?
Speaker 4:Yes, because decline is where it's at.
Speaker 2:You hear?
Speaker 3:that, curry, I heard that. I'm sorry, it was that on Facebook that was cheering me on for picking on you. Yeah, I remember that. I do it with love. You know that because you can show her your elbow after we're done this. Yeah, yeah, because he's having issues with um bed sores bed sores on his elbows. That's one of the checks I was doing.
Speaker 4:I should have been yes, and that's one of the checks that gets him. I don't know where curry lives, but gets him immediately for palliative care, which is paid for under the same umbrella. Yeah, so even if they say you're not ready for hospice, say well, I need some help. So you either got to send in home health or you got to send in palliative care.
Speaker 2:Yeah, I've been having trouble with them the last couple of years.
Speaker 3:Everyone listening. You all know how much I love Curry. Yeah, I think you should do this and if you're listening, you have Lewy body. Do it for your loved ones. More so if you even if you don't think you need it cause I know, curry, we we've asked you in the zoom groups, like who's taking care of your, your sores? And you're like, oh, linda does all that. But that would relieve her from having to do that and they would have medical people there to make sure if it's not healing by so many days, they could do something else yes, and that, and even home health can do that, and it's going to be paid for by medicare too.
Speaker 4:they'll send to ari, and on a regular basis, to do wound care and to measure it and to make sure it's healing and if not, then they're going to look at, um, maybe a wound center which can be taken care of too, so under palliative care. That's what it's about.
Speaker 3:Any symptom management, any physical therapy, any social work that you need, anything so they could basically, like in Curry's case, help him heal that wound and then help him do whatever he needs to do to try to avoid, because they come back every now and then right curry, yeah, yeah, yeah, um, it's an ongoing problem yeah, yeah. So, um, yeah, I think you, your wife is amazing, she's been doing an amazing job. But you know, it's what I'm hearing is.
Speaker 4:It would give her some. I always tell people there's not a caregiver I haven't met, that is not an angel and an excellent nurse. They make excellent nurses. All family members can, as all family members can, but it takes a burden off them to have that extra eyes on and to be able to say they're doing it right and to help them, to teach them. So sometimes we have to look at our caregivers and say they need the help. I might not need it, but they do and that's a good thing.
Speaker 3:Yeah, yeah, that's good and I think you answered. At what point in the Louis journey is it appropriate to contact hospice? Now, I'm assuming. Well, the normal progression with this disease, as I'm sure you know, is with my husband. He was diagnosed with mild cognitive impairment in the very, very beginning, like seven years ago, and then that changed to Alzheimer's and then it changed to Lewy. So what point in the journey is it appropriate? Is it too soon? When you're well, I don't want to say when you're first diagnosed, because some people get diagnosed and they're well into it.
Speaker 4:Well, you know exactly. You know that each Lewy body client or patient is different, and some decline very rapidly and some not so rapidly. Some live past the expectations, some don't even get a year. And so when it's appropriate is when you see them declining to the point and this is what I would tell everybody when we have weight loss, when we are starting to see maybe behavioral changes, maybe some aggression, maybe some more agitation, more restlessness, when we see them sleeping more all the time, when we see them falling, or all of a sudden we're having incontinence and we're afraid of the shower, that's the time, that's the time to say you know what? I just need some eyes on and let someone decide where we're at, and definitely if we're seeing any infection, because they're going to rear their ugly heads and it might be infections and wounds or it might be it's generally urinary tract or pulmonary, but because of the potential for silent aspiration. But I would have no hesitation if in fact, I have a. I don't know if everybody knows that, but I didn't mention it but I've had two brother-in-laws with Lewy bodies. One is already moved on, his journey's been finished, and the other one is very active in this group. But I would say that even palliative care at this point would be an excellent option for him. But just getting the referral and finding out, that's the thing. And if you have other comorbidities, not just Lewy bodies, if you have cardiovascular disease or maybe you have COPD or maybe you have chronic urinary tract infections or maybe you have diabetes, those comorbidities make you at a bigger risk for decline, and so you fit quicker sometimes into the um, into that criteria that you met, because there is because there's no doctor on earth first.
Speaker 4:First of all, that is God, and so whether a patient lives past that six months or not is not the situation. Why you want to get hooked up in hospice sooner is because you want to build a rapport and a trust and a relationship with your team. Each person gets their team. They get to know you, you get to know them, you get to be able to trust them and become more honest and forthright with them, and so the sooner that happens the better. We don't do anybody any good with hospice when we come in in those last couple of days because the dying process started about three or four weeks before. Maybe we didn't see it, maybe we were too. You know, sometimes our caregivers don't see it and hospitals would come in and say oh, there's been a big change, and they're like what, what? But they do. They see it because they're not there every day, and so the sooner that you can get it then the better that is and you don't have to worry about that six-month thing. I know that question is coming up too.
Speaker 3:Yeah, yeah, and denial is a thing, caregivers, it's a denial thing.
Speaker 4:Well, it's with every illness.
Speaker 2:Yes, vangie, I think you pretty much covered this, but you might just touch on it again. How do we choose a hospice? You know there's several in my area, and how would I go about choosing the right one or choosing any of them?
Speaker 4:And I think that's one of the best questions because that's overwhelming and especially overwhelming for a caregiver. You know and I would tell you several you have several options. You can always go to your state site. You can go under hospice and palliative care of the state of Missouri and they will give you a list of them in your area. Then you could start reviewing them with some questions. You're going to want to ask these. You know some questions and I have these questions set up for you so you can also go to your state Department of Health and you can call them and you could ask them who. You could ask them to review the surveys, okay, so you could find out who had deterrent, who had things they needed to clean up. You could also just your doctor, your doctor's nurse. They're using them in that area, they know them.
Speaker 4:There's because there's hospices and hospitals. There's private, for-profit hospices. There's not-for-profit hospices. There are hospices just in the nursing home. Some nursing homes have their own hospice units and companies. So I would check with my doctor first. I would make sure that the hospice again, I said this but this is so important to me because there are guys all hospices are not equal and unfortunately there are bad for-profits, there's bad not-for-profits. You know what I'm saying. There's good and there's bad. You want the very best for your loved one, so check with your doctor. So check with your doctor. And then the questions I would want to know from these people when I'm talking to them are you Medicare and Medicaid approved? Because that tells me, eyes are coming into that building unannounced and they are reading charts and they are making visits out in the field and they are monitoring.
Speaker 4:Number two does the hospice company provide equipment? Do they provide nurse aid? Do they provide counseling, brief support and registered nurses to make those visits? Be specific about that, because when they say, oh yes, there is a nurse and don't get wrong, I have nothing wrong with LPNs. They can make those visits. But it is against the law in almost every state in this nation for an LPN to change a med order, you know, without supervision. And so you want to make sure that it's RNs that are coming in, if you can, on a regular basis, or that are overlooking the plan of care at least, and that you're seeing an RN on a regular basis.
Speaker 4:Then how long have they been in business? You know, have they been in business a long time and that says a lot. We have a hospice in Southeast Missouri that's been in business for over 40 years and they were doing hospice before hospice was called hospice, so it says a lot about them. So are the services medication, equipment what are? What are they going to provide? You want to know that they're providing their medications. You want to know that they're providing equipment, all of those things. Are they available 24 hours a day?
Speaker 4:Now, this is one of those misconceptions. People think that hospice can come in and provide care around the clock. That's not what hospice does. The goal of hospice is to educate the caregiver in the care. But when we say 24-7, that means do you have a direct person I'm going to talk to on the phone, and how long will they take? Where is your nearest facility in regards to you?
Speaker 4:You want to know how long would it take for that nurse to get to your house in an emergency or in the middle of the night? You need to know that If their nurse is 100 miles away from you, 100 miles in the middle of the night when you have an issue is too much. So you also want to know who answers that phone. Is it an answering service. Are you talking to a nurse? Now? Most companies nowadays are going to have an answering service, so that's not the issue.
Speaker 4:What's an issue is how long will it take before they return your call, how long before the nurse will take to call you after you've called in. So you want to know that. Do they provide inpatient unit care? Now, under Medicare guidelines, an agency needs to be able to provide you respite care, which means the family members have one week a month that hospice takes and puts them in an inpatient unit or a nursing home, that they're over to give you that break, and it is paid for by hospice. Also, if, let's say, your husband had a symptom that could not be gotten, could not be brought under control at home we've tried, we need to put him in inpatient. Do they have that? Or are they going to say you need to get out of hospice and you don't want them? Okay, they need to be able to put them in, cover that charge and then get them back home as soon as possible, as soon as that symptom is under control.
Speaker 2:Would that be like a chronic UTI or something?
Speaker 4:It could be like, let's say, we have a pain management problem and the pain needs to be converted from, let's say, pills to maybe IV or maybe a liquid form, and it's going to take more than can be done at home in a short period of time. The goal is never to have the patient in a lot of pain. So, yes, lots of times you put them in, you get that pain under control whether it's even maybe converting over to patches or whatever and then bring them back home. So that's what that looks like, for sure. And then do they have that respite care? Do they provide volunteers? You want volunteers, and all hospices that are Medicare certified have to provide hospice volunteers that have been trained.
Speaker 4:So what do volunteers do? Well, it's kind of endless. They can run errands, they can come sit so the caregiver gets a break and can go do what they need to do. They can actually even do certain aspects of care. So we want to know that they have those volunteers and they're available to you and that one is assigned to you within that first two weeks of care. Okay, what is your brief counseling? What kind of grief counseling do they provide? What kind of counseling do they provide? What kind of social workers do they provide? Are they a bachelor's associate, or are they masters, or what do they have to have? So we want to know that. We also want to know do they have a chaplain on board? Because they need to provide chaplain services. Now a patient can decline that service, but they need to also be able to provide it to the spouse if they want. So those are the questions I would have for any hospice.
Speaker 3:Well, I'm going to be asking you if you can send those to me so I can just listen back. It's up to you. So we're going to stop here for a bit, because we've been talking for a while. We try not to let the episodes go too long, but you know there's going to be a part two on this, so we're going to pick up next week with Vandy as we ask her what specific services there are. So hang tight, we'll be back next week.