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Informed Aging
A podcast about health, help, and hard decisions for older adults.
Informed Aging
Episode 85: Hospice Myths: The Truth About End-of-Life Care
In this episode, we tackle common myths about hospice care and uncover the truth about what hospice really means. Join us as we break down misconceptions, discuss the benefits of hospice support, and highlight how it can provide compassionate, dignified care at the right time.
5 Wishes advance planning documents
Robin: Welcome to Informed Aging, a podcast about health help and hard decisions for older adults. I'm Robin Rountree, a former family caregiver. I've worked in the home care industry and now work for the Alzheimer's and Dementia Resource Center. The thoughts and opinions expressed here belong to me and my guests, not our wonderful employers and sponsors.
This podcast is a service of the Alzheimer's and Dementia Resource Center. Before making any significant changes in your life, or your person's life, please consult your own experts. Today we're gonna talk about hard decisions regarding hospice, but so many people misunderstand hospice. We're going to dive into some of those misunderstandings today, right after this.
And we're back today. She's back again. A return guest. I love that. Sarah Garcia, the marketing and business development of Advent Health Hospice. How are you?
Sarah: I'm great. Thank you Robin, for having me. I'm
Robin: so glad that you're back. you were a very early guest for us and had a very popular podcast because people want to know about hospice, but it's not something you just ask your friends and family about. So if you kind of want some of the basic stuff about hospice, you can go back to that episode. But there's so many misconceptions and myths. That's what I really wanna dive into today.
Are you ready?
Sarah: I'm ready. I'm excited to talk
Robin: about hospice. Okay. what exactly is hospice if you haven't heard of it before?
Sarah: So many people define hospice in different ways. In fact, when you hear that word hospice, , people react. They usually have one of two reactions. One can be fear or the other can be if someone has experienced hospice, usually there is that.
glimmer of hope in their eyes, and they come out and give me a hug when they find out that I'm in hospice. Hmm. And I think for those who have experienced hospice, what hospice means is all of that extra care that somebody can get in that last chapter of life.
Robin: And, you know, it is hard to talk about end of life, but you and I sitting here today are terminal.
We don't know when the end is coming, but hospice is for someone that they know. The end is relatively near.
Sarah: Yes. So according to the Medicare hospice guidelines, basically what a physician has to look at is saying. If I wouldn't be surprised if this patient were to pass away in the next six months if the disease runs its normal course.
None of us have a crystal ball. None of us is God. We don't know how long we have. It could be days, it could be weeks, it could be a couple years. But, Medicare has come up with some very specific criteria and guidelines that when we meet with a patient, a potential patient, we review those guidelines along with their medical record and discuss this with our physicians.
And if it looks like they meet the criteria, then they have the option to sign up for the services. Or sometimes people need a little bit more time to think about it. Sure. But I always encourage people. If you are thinking that hospice could be an option, don't delay. Go ahead and call in and get hospice to come out and do that assessment and just see if you qualify or not.
Robin: So a lot of people think, the myth is it's for the last three days on earth or something like that, but it's not that crisis ending necessarily. And the sooner you get hospice in, the more help you get, right?
Sarah: Definitely. I think when hospice first became this Medicare benefit, people were accessing it right in those last couple days, and so that kind of perpetuated and people started to think, you call hospice when you're really, really at the end, and certainly someone who's that advanced could definitely benefit and should be on hospice, in my opinion. But what most people don't realize is that you can actually access hospice much sooner than you think. So again. Medicare has that very specific criteria and we really encourage people to, call in, talk to their doctor about hospice and see if you could qualify for those services.
Because like you said, if you come on, if a patient comes on, six months. Three, four months prior, they have the opportunity to really get to know the entire team of hospice that's taking care of the patient. So they get to know that nurse who's coming in and reviewing medications, reviewing symptoms, talking about the disease process.
They also have the social worker that chaplain, the home health aide, the physician. There's so many people on this hospice team that take care of the patient and also provide support to the family. So the longer you can have all those services. The more support and the more help they're going to get during that last chapter.
I tell people that the disease is going to progress and the disease is going to run its course, and patients and families, they have the option to go. Go through that with help or without, and I encourage people to access all the help they can get because it's definitely a difficult chapter.
Robin: Yeah. If you're going on a journey, man, it helps to have a map. Yes. Isn't that kind of, is what hospice is. 'cause you don't know what's normal. our society's really good at hiding death and dying. and not having people witness that, which is much different than it used to be. so to have somebody to ask, is this normal?
Is this a crisis or is this supposed to be happening? And if it is a crisis, can we do something such, such a benefit there? So hospice isn't just for cancer patients?
Sarah: That's correct. There's so many different. Diagnoses that we can help with. So some very common ones that we frequently help with. end stage heart disease.
End stage. COPD. Alzheimer's. stroke A LS The list goes on. Basically anybody who has a disease that is very advanced and life limiting, we will take a look at that and see what those indicators tell and see how we can help that family. That's nice.
Robin: That's nice. So another myth that is out there about hospice is if you enter hospice care, you no longer have control over your care.
It's all up to your nurses and your doctors.
Sarah: I'm really glad that you brought that up because that actually couldn't be further from the truth. Okay. Hospice revolves around the patient and their choices, or sometimes it's the family who's making those, the power of attorney who's making those decisions.
But everything centers around the patient. Yes. There's certain things that Medicare requires, such as. , a minimum frequency of visits, but there's so many things as far as what we're doing, the goals of care of that patient. We are coming alongside that patient and family and really trying to put in place some of the things that they want for their care.
They really get to direct, a good portion of it.
Robin: So they're gonna have a say in how comfortable they are with pain, for example.
Sarah: Yes. That's something that the nurses, and actually all of our team members are going to be asking the patient, about their pain level when they make those visits, and we want to find out where do they want to be, maybe.
maybe they're okay having a little bit more pain, but being a little more alert. or maybe they wanna be completely pain free, but that might mean a little bit more medication. So it really depends on what they want and, we do our best to do whatever. Is their desire.
Robin: I like that. I like that. So you are in the driver's seat if you are in hospice.
Sarah: Yes.
Robin: Love that. So we're talking about doctor visits, nurse visits. That's gonna be expensive, right?
Sarah: Actually, hospice is covered by Medicare and a number of people have, Medicare Advantage plans. It reverts back to Medicare when they sign up for hospice, so it works the same way. So Medicare, medicaid, and private insurances.
Cover hospice. we also will take care of patients who don't have any insurance. Oh. So we tell people finances or insurance should never be a reason that you don't access hospice.
Robin: That's incredible. And does it cover, what, 75%? Medicare covers hospice.
Sarah: So Medicare and Medicaid cover a hundred percent. Wow.
Commercial insurances. You or I who are still working. If we needed to access hospice, it would be according to our own plans, individual benefits. Okay. We'd have to look those up individually, but the majority of people who are accessing it have Medicare or Medicaid and it covers a hundred percent.
Robin: and then your family, do they have any control once you're in hospice? That can be tricky. Yeah, I'm sure.
Sarah: It really depends on the patient. So if the patient's able to make their own decisions, we will do our best, to honor the patient's wishes and to work. With their family.
of course that patient needs to give us permission. we need to follow hipaa, all those rules and whatnot. But we are here really to support the patient and the family. Now, let's say that, I. We're caring for a patient who has a power of attorney, has their healthcare surrogate, they're not able to make decisions for themselves, and it's that, legally authorized person who is running the show, basically.
then of course we're gonna go and do everything through that. person and involve, the people that they allow us to and speak to the ones they allow us to.
Robin: And that's something that we've. Talked about so many times on this podcast is if you have specific wishes, write them down.
Yes. And make sure that the people that are in charge of making decisions for, your wishes. 'cause that makes it so much easier for everybody. Yes. Do you do anything to help people make those decisions? Is there a way to figure out what they want? Like a questionnaire?
Sarah: So there is something called Five Wishes, and we have them, we have these booklets at our office. You can call us and we can mail one to you or some, sometimes your doctor's offices carry them or there you can see them out in the community. But it's a document that while you're still able to, you can let your wishes be known for how you want your care to.
Play out. And it gives some different scenarios that, one could find themselves in and you could say, yes, I want this. No, I don't want that. Here's the person I want to speak for me. it's a great document to put together and tell your family, tell your physician that you have this so that, if you.
Do find yourself in a situation where you can't speak for yourself. That document really can speak for you.
Robin: That is five wishes. I know you can download that as well if need be. Mm-hmm. So we will put that link in the show notes. you were saying that, hospice care would start with a doctor thinking you've got about six months, give or take to live.
Mm-hmm. So does your doctor need to tell you that it's time to go on hospice or can you make that decision that, you wanna look into it,
Sarah: so that's a great question. You do not need a doctor's order in order to call hospice and have us come out and see you in your own home. Now, if you're in a nursing home or you're at the hospital, then we do need to follow their rules, which require a doctor's order.
But if you're at your own home, you can certainly pick up the phone. You can call us and say, Hey, I think I might. Need hospice for myself or for my loved one, and we can go from there. We do like to work with your physician. We like to be able to obtain records so that we can really look into the diagnosis and see how we can best treat you and look at the disease progression.
However, it's not required for your doctor to write that order. Now once somebody does decide that they want to come on hospice, we do have to have, the hospice physician review the records and sign off on it, that you meet the criteria. But as far as your own personal doctor, it's not required, but we.
Welcome the opportunity to really work with your local physician.
Robin: And just side note, from having read being Mortal by Atul Gawande, doctors can be very focused on curing you and may not want to consider that prospect of they've failed you and go, okay, they're terminal. There comes a time when there's no more you can do.
Mm-hmm. And if you're going into these treatments that are causing you agony, is it best to lay off? And it's, you've gotta make that decision on your own, not your doctor. Yes. So sometimes I think it's wonderful that you can call and say hospice. It may be time to look at this. Yes.
'cause your Dr. May not be on that mental track.
Sarah: And if. you may not have made up your mind either, and it's always beneficial to weigh your options and know, be an informed. Whether it's a caregiver or a patient, it's really good to be informed about what your options are and make a really good decision of something that you feel comfortable with.
And I encourage people if you're thinking hospice could potentially be an option. There's no harm in calling hospice and calling to get an evaluation. You can get a baseline, you can see, hey, do I qualify or not? And if you do qualify, then you have a decision you can opt for it or not. I.
Some people call us and they're not quite there yet. they're not, they've got a little ways to go and sometimes they find that even, having gone through that evaluation, just a relief to know, okay, now I know where I am in that disease process. I'm not quite there yet. but I'll call once things, take a change.
Robin: Alright, here's another myth. Once you're on hospice, you are locked in and cannot get off of hospice.
Sarah: A lot of people do fear that, but the truth is, again, you're in the driver's seat. So you get to determine,when you sign up for hospice. You can sign off of hospice and you can sign off for different reasons.
You could sign off because the hospice you're working with maybe isn't meeting your needs. Hopefully that would not be the case with any organization, but you have that, right. You also have the right to sign off and seek aggressive curative treatments. So it could be that today. We don't have a cure for a certain disease, and it's announced two weeks from now that now there is, and you decide you wanna go for it.
You have the, right to sign off and pursue aggressive treatment if you would like to do that. You have the right, to go to the hospital if you decide you want to do that. We encourage patients to call us, if they're experiencing a symptom that's out of control that they would normally go to the hospital for, because we can bring care to the bedside and really help resolve those symptoms and keep the patient from feeling that urge to go to the hospital.
But a lot of people are programmed to call 9 1 1 and go, right. Right. But they certainly have the right to go. But we definitely want to bring the care to the bedside and to that patient so they don't feel the need to do that.
Robin: Excellent. we are talking with Sarah Garcia from Advent Health Hospice, and if you're on hospice care, it's gotta be at the hospital or a hospice facility.
Yes or
Sarah: no? Actually, most of our hospice care is provided wherever the patient's living. So for the majority of our patients, they are either home with family or they're, they're in the home that they've always been in with perhaps a family member has moved in, or they may still be fairly independent and qualify for hospice.
we also care for people in nursing homes, assisted livings. Occasionally we care for patients in a hospital setting. It doesn't happen a whole lot, but it does happen. And we also have hospice inpatient units for when a patient has symptoms that are out of control or things that really are difficult to manage in the home setting despite having clinicians at the bedside.
Robin: So if I wanna do it at home, I don't have all this medical equipment that I need, can. Can hospice help me out with that?
Sarah: That's one of the great things with hospice is that your equipment is, covered. So when the admission nurse comes out to meet with you or your family member, they're gonna find out what types of equipment you need.
So a lot of times that looks like having a hospital bed, perhaps a bedside commode. Table, a wheelchair, a walker, things like that. and it may be that today when we do the admission, maybe. None of that is needed. But as time progresses and your needs change, then we can order things, at a later date when you tell us you need them.
Robin: And if you're on Medicare or Medicaid, that pays 100% For hospice, then it's
Sarah: paid for. Correct. So not only do we cover that equipment, but we also cover, Needed supplies, like if somebody needs, briefs or wipes, gloves, those types of things, that's covered when, a patient comes onto our services
Robin: and that is significant, those incontinence supplies are necessary but not cheap.
So that's wonderful that you supply that. You also pay for some medications, correct.
Sarah: Yes. So when somebody meets with our hospice nurse, they're going to review the diagnosis, go over the medications, and if that patient or family would like to have a list of what is covered or what's not covered, that would be provided.
But typically what they're looking at is what are the medications that they're on that are related to the reason they're on hospice to begin with. And a lot of times they're on medications that are helping with symptoms. People often think that when you come on hospice, we're just gonna take away all the medications all at once.
Okay. And there certainly could be some medications that, between you and the nurse and the hospice physician, they're reviewing it and looking at, is this medication doing much good or any good at this point? Is it causing harm? Sometimes people are on so many medications and there's so many side effects from each of those that when you start looking at 'em and.
Carefully removing. We don't just yank everything away,
Robin: no cold Turkey.
Sarah: But looking at those, some patients actually start feeling better when we take some of those away. But then there's others that are really symptom management based, and we want to ensure that those remain on board to really help.
keep that patient comfortable. So it's very personalized. I don't wanna blanket statement say, all these are always covered. These are always taken away. It's very individualized to the patient.
Robin: Okay. Interesting myth that I read that hospice is just for people who've given up on life.
Sarah: We hear that one a lot.
Okay. And really. hospice is about changing the focus. It's not about giving up. It's about making the best for whatever time is left, and hospice can really help you do that because we're all about managing the pain and the symptoms so that the patient can enjoy whatever time is left, whether that be a few months or a few weeks.
We want it to be as pain-free as possible. the social worker and the chaplain are also working on those psychosocial things too. Mm. So sometimes we're helping, patients and families who have been estranged for years, help repair relationships, or sometimes we find out that there's something that a patient has always wanted to do and we're able to help them do it or maybe do it in a different way that they're able to do it.
Wow,
Robin: that's
Sarah: incredible.
Robin: And it's covered by Medicare. That's just always my favorite. My favorite thing the government does is make sure that hospice is paid for, another myth. Hospice care doesn't really make much of a difference.
Sarah: That is a big myth, and I will speak from my own personal experience. We had hospice for my grandmother.
we had it for about, I think in her last seven or eight months, and my family believed a lot of these myths that you've brought up today. They thought it was for the last few days of life. And I had just joined a hospice company and was learning about hospice and my grandmother lived out of state, but I would go back and visit a couple times a year and every time I went back I could see her.
Smaller dec decline. You know, a little decline here, more decline there. So. After a hospitalization, I encourage them, you know what, I think it's really time to look into hospice.
And they did. It was, like pulling teeth to get, I'm sure actually I had to make the phone call. but they came out, they evaluated her and they accepted her onto hospice. And it was so helpful to have the nurse come in once a week and review the symptoms, review the medications, review the changes.
My family's not medical and this nurse would. Prepare them and, talk about what had been going on and say, yes, this is to be expected. This is normal. this is a change, but it's not something to be alarmed about. So it really helped reduce that anxiety, and really helped, my parents as they walked through caring for her.
they also provided a home health aide, so this person was helping her, with. Taking a bath a few times a week. And that's something that I don't think they would've been able to care for her right at home without that extra help. And so as time went on, she continued to decline and eventually passed away.
And after she passed my, one of the first things my dad told me was. I had no idea that a hospice could help this much. I had no idea that I could access it this early in the disease stage. even though in hospice terms it is the last stage, right? but it wasn't the critical, A point where we were so close, in the last few hours or last few days, approaching death.
So it was such a blessing to my family to be able to have all this extra support those last seven or eight months. Yeah. as she was declining.
Robin: That's incredible. One myth, that people err on the other side. A lot of people are like,no. hospice won't help me that much. Other people think, oh, when they put their loved one on hospice, they're out.
They don't have to be a caregiver anymore, and hospice comes in, takes care of this person 24 7. Does that happen?
Sarah: I had love if that would happen. Right. I think we'd all love if that happened. Yes. Hospice is designed to be supplemental care, so we help, we assist the caregiver in caring for their loved one, or if the patient is, living in a nursing home or in assisted living, we're assisting the caregivers at that facility and caring for. that resident, so hospice. We frequently visit the patient. So again, we've got the team of nurses, social workers, home health aide, chaplain, physician. We've got all these team members who are making visits throughout the week, throughout the month and providing extra support. But their role is really to help, Care and guide that patient or guide the primary caregiver and be of support in that manner. it's rare that we would be there 24 7. Now, there are instances where a patient may have a symptom that is out of control. difficulty breathing. Increased pain that doesn't stop despite different, trying different medications.
there's a handful of different symptoms that, Medicare says, okay, if you've, if you tried to get these managed and they're still not managed despite some effort, we could put somebody at the bedside to really help. Get those symptoms and get those symptoms manageable. And so sometimes that takes a little bit of time.
Sometimes it takes more than a couple hours. Sometimes it takes 24 hours or a couple days. And so there are instances where we could put somebody at the bedside for, a short period of time. But it's symptom-based. So as soon as those symptoms are resolved, then we would return back to that regular routine care where they're getting those visits from the team members.
Robin: And you can't just say, oh, okay, my nurse is gonna be here from one till three, so I'm gonna pop out and have lunch with my girlfriend. that's not what it's for.
Sarah: we actually, what we do have, we have a team of volunteers. Oh. If somebody is on our services and there's that need, we find, hey, you know what, the caregiver really needs a break and a break could look like a number of different things.
It could look like ducking out for a couple hours to meet up with friends for coffee or lunch, and, your hospice team would, put in a volunteer request and. There's volunteers who will come and sit with a patient for a couple hours so that the caregiver can get that type of a break. They're not, hands-on caregivers, so they're not going to be, feeding or changing briefs or, giving medications or anything like that.
But they would be more of, it would be more of a companion visit for, just have somebody there. Oh, nice. and we also offer respite care. sometimes a caregiver really needs more than a couple hours. They need. A couple of days. Yes. or they might be attending a wedding out of town or something's going on and they really need a break.
So Medicare will allow a patient to go into, generally it's a nursing home, but sometimes it could be an inpatient unit. they could go for five days. Medicare covers it and the caregiver gets a break.
Robin: Fantastic. Thank you Sarah Garcia so much for your time and digging in deep on all of these myths and setting us straight on hospice and what a wonderful thing it really can be.
Sarah: Thank you so much for having me, Robin. It's been a pleasure.
Robin: I. You're so welcome. Please make sure to subscribe to our podcast Informed Aging, tell your family and friends about us too.
If you'd like to support the work that we do at the Alzheimer's and Dementia Resource Center, you can go to the website, adrc cares.org/donate. You'll find us on facebook.com/informed Aging. Today's episode was recorded at ARC's Podcast Studio. That's it for now. We are looking forward to our next visit.