HOSPICE NURSE PENNY HAWKINS SMITH: UNRAVELING HOSPICE CARE & NORMALIZING DEATH AND DYING ONE VIDEO AT A TIME

What if the shift towards for-profit hospice care models is compromising the quality of your loved one's final days? In this episode, Don and I have a robust conversation on hospice with Penny Hawkins Smith, BSN, RN, CHPN.  Hospice Nurse Penny, as she is known to her millions of social media followers, is a nationally certified hospice and palliative care registered nurse with over 17 years of experience  with a passion for hospice advocacy and normalizing death and dying.   

Have you ever wondered how hospice care is funded and what services are actually covered? We break down the often-misunderstood world of hospice care funding, highlighting the system used by nonprofit agencies and detailing the array of services provided under this model, as well as the hidden truths behind the financial practices of many hospice agencies and their unsettling impact on patient care. We confront the alarming rise in Medicare spending and the exodus of physicians from the field. The episode also tackles the aggressive marketing strategies in the industry and the emotional turmoil families face when navigating palliative and hospice care. From the importance of clear communication and family advocacy to the systemic hurdles within end-of-life care, this conversation offers insights and personal stories that resonate deeply.

Navigating the maze of hospice care decisions can be daunting, especially when facing ethical dilemmas and advocating for compassionate treatment. We explore the critical role of hospice advocacy, the rights of patients and families, and the often-overlooked challenges of caregiving in nursing homes. Through personal anecdotes and professional insights, we shed light on the importance of respecting patient dignity and goals, and the necessity for better education and support in end-of-life decisions. Join us as we call for empathy, open dialogue, and a more humane approach to hospice and elder care.

Follow Hospice Nurse Penny on TIKTOK

Chapters

• 0:00 Current Issues in Hospice Care
• 12:08 Challenges in Hospice Care Funding
• 20:19 Navigating Palliative and Hospice Care
• 24:57 Issues in End-of-Life Care
• 38:32 Understanding Hospice Rights and Care
• 47:00 Caregiving Challenges in Hospice Care
• 52:44 Understanding Hospice Medicare Benefits
• 59:55 Challenges in Hospice Care Decision-Making
• 1:08:23 Ethical Issues in End-of-Life Care
• 1:17:19 The Importance of Hospice Advocacy

Transcript

Susie Singer Carter: 0:00

Hi. This is Susie Singer Carter, and before we start today's episode, which is on the current state of hospice care, I wanted to clarify a few of the most recent facts, because the topic can be so confusing, even for the experts. According to the University of Pennsylvania, Leonard Davis Institute of Health Economics, there are ongoing concerns that hospices eligibility and payment systems do not support consistent, high quality care. They encourage profits over patients. Medicare's hospice benefit has become a topic of concern in the year 2000 the annual Medicare spending has gone from $3 million to $23 billion today, 75% of all agencies are for profit. It's reported that well managed nonprofit hospice agencies yield an annual profit margin of about five to 6% while for profit, public or private equity agencies yield about 18 to 22% in recent years, the for profit dominated industry has been the subject of investigations and exposes questioning the quality standards and financial practices. The issues revolve around racial and ethnic disparities. They also revolve around quality measures. While there are systems that exist to measure these, there's a wide variation in how they are applied, gamed or even avoided by hospice agencies. In fact, Medicare's care compare reports that 47% of the quality data is missing. The number of hospice patients whose primary residence is in a nursing or assisted living facility has grown exponentially. Hospice agencies can't always control the quality of care because it's delivered by staff in those facilities. And finally, we are experiencing a for profit downward spiral in the early 2000s some of the very best for profit programs went through initial public offerings and became publicly traded. After that, we watched the Hospice Quality spiral down and the attitudes of the new management focus on finances. While there are still excellent programs, many of the for profits maintain their high profit margins by skimping on services, tolerating unmet needs, shifting costs to families, short staffing on nurses, maintaining unreasonably high case loads and short staffing doctors, in fact, too many doctors are leaving hospice care. It's such a cruel irony to know that in the beginning, we created hospice in part to ensure dying patients had access to physicians. Now a number of hospice programs have themselves become the barriers to dying patients being able to access their doctors. Having said all that, hospice has improved end of life care for millions of people over the course of its history, as with everything else in healthcare, more oversight and enforcement is required to ensure that everyone receives the quality care they deserve, when and where they need it. And now here's our episode.

Unknown: 2:53

when the world has gotyou down.

Don Priess: 2:56

Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear and to date, there's no cure. So until there is, we continue to fight with the most powerful tool in our arsenal, love. This is love conquers all, a real and really positive podcast that takes a deep dive into everything, Alzheimer's, The Good, the Bad, and everything in between. And now here are your hosts, Susie singer Carter and me Don priess,

Susie Singer Carter: 3:33

hello, everybody. I'm Susie singer Carter

Don Priess: 3:37

and I'm Don priess, and this is love conquers all. Hello. Susan

Susie Singer Carter: 3:41

Donald, good morning. How are you? Good morning?

Don Priess: 3:43

I'm great. It was a nice weekend. We actually got outside, got to the beach area, which haven't done in so long. And, yeah, so actually there, you know, experience what they call life, which is something we haven't been doing for the last two years. Yeah, and

Susie Singer Carter: 4:02

it was, it was actually very scary and just and very exhausting. That thing called life was really exhausting. We had my two little my two little granddaughters, who are four and under two, who like 19 months, and we, and we decided to take them to the Venice pier, Santa Monica Pier. Santa Monica Pier, yeah, which is literally on a summer day. It's like, it's like, you're in some, I don't know there was at least 100,000 people there. Like, we just literally was, like, it it was hot, and we're, like, making our way through crowds of folk, and we're like, so frightened that we're gonna lose one of them or something's gonna happen. Yeah? Who knows? It's all up in the we did, we did, you know, we

Don Priess: 4:47

did good.

Susie Singer Carter: 4:48

We did pretty good. We did

Don Priess: 4:50

two, yeah, we got we arrived with two, and we came back with two. So that came back with two.

Susie Singer Carter: 4:58

Need to figure out how to go close. Closer to bathrooms when someone is potty training. That's very that was interesting. But thank God for there was a lot of sand. It was like a kitty litter box for my for the four year old. So it was great.

Don Priess: 5:10

Oh my god, what a picture.

Susie Singer Carter: 5:12

Yeah, picture that you guys don't

Don Priess: 5:16

actually don't pictures.

Susie Singer Carter: 5:20

She's a go with the flow kind of girl. Yes, all right, so I'm gonna, I just want to jump in and just say I'm very, I'm very excited about this conversation we're gonna have today, Dawn, with with hospice nurse Penny, which you're gonna introduce her properly. But I just, I, I, you know, I am very excited to have a different point of view on on the topic that we, we tackle one of these topics in our in our documentary, No Country for Old people, which is the the corporatization. Of our health care system in nursing homes, and particularly in the past, I want to say five years, it's really come to the surface in our news reporting and from the experts that hospice has become a big target for this corporatization, because there's a lot of money to be made in hospice because of the the way that it's structured financially. So, you know, normally, in a in a long term care setting, Medicaid takes care of will cover when, if you're on Medicaid, it will cover your living expenses. So, but it only does that in a long term care setting, not in your home. So then often people that can't be in their home and need to need to transition into hospice are therefore in their in the same facility, or perhaps a different facility. They may have to move. In my mom's case, it was the same facility in now into a hospice situation. And so there it's often now. Now hospice is now taking care of via Medicare, and the the the amounts that they pay Medicare is, you know, significantly higher than Medicaid will pay. Medicaid is anywhere from like 250 a day to like sometimes 300 something like that. It varies across the country. But then, you know, hospice can start anywhere from 300 and go above. You know, well above $1,000 a day depends on where, what your, you know, acuities are, where you are, what you need and and so, you know, in the nature of hospice, and I just thought it's important to like, express like, what, what our what we've been, you know, given as information for hospice, right and and based on the people that we spoke to for the for the documentary, which is, it's, it's really become big business, and because it is a Comfort Care program, it's a it's it you must be diagnosed from A doctor to have six months or less to live you, and you are provided, you know, comfort care, anything that keeps you comfortable for however long you're going to live within that six months, and that doesn't include anything that's going to be a curative kind of treatment. So, you know, unless

Don Priess: 8:39

that treatment at it lends to the comfort, you know, if it's just specifically to treat that to to make it more comfortable for them, then there will be some of that, right,

Susie Singer Carter: 8:49

right? The way one of our experts puts it, he said, you know, if you have cancer, you're not going to get chemo. But if a tumor is, is, you know, you you form a tumor, and it's, it is, you know,

Don Priess: 9:00

causing a lot of pain or no hindering you from

Susie Singer Carter: 9:04

breathing, or something like that, like, you know, then, then they're going to, they'll, they'll address that situation, but not to extend your life. Let's put it that way. So what's happened that we've discovered in our research is that it can, this kind of program can get taken advantage of because it they're getting higher rates of pay, you know, billing. They can bill higher rates and they don't. They can put less effort and less staffing and less resources towards this issue and so, or towards this program and so. Often people are either are pushed into it or, you know, invited into this program earlier than they need to be, and then often are given less treatment than they need, deserve and want, because they're just kept comfortable and so, and that's all due to the. The issue of understaffing. And understaffing is, is, it's an epidemic, you know, in all of our facilities, because that is the business model that that the corporation bases their their business model on. I mean, this keeps this key. You know, staffing is the most expensive part of any business employees, and that is how they keep their their costs down. Yeah,

Don Priess: 10:27

and they're that. And so therefore, in this scenario, hospice is not doing what hospice is supposed to be doing, and when hospice is done properly, it's amazing. It's a beautiful thing. But in this case, it's, in these cases, it's being abused and not so that's right, that's that's the position, right?

Susie Singer Carter: 10:47

So we wanted to hear the when it is a beautiful thing, and what, what does that look like? How does that look like? How do we get it, you know, how and how do we not end up in a situation that my mom and millions of others have experienced So Teddy that leads it to you dawn to make an introduction of our guests that I'm really excited to talk to.

Don Priess: 11:13

Penny Hawkins Smith is a nationally certified hospice nurse working in inpatient hospice home, hospice case management, hospice, quality, regulation and education during the covid 19 pandemic, Penny found her way to social media, where she quickly realized that she had an excellent platform to bring education about hospice, using trends, humor, stories and Q and A's. Penny has found a wide audience and currently has over 2 million followers on social media known as hospice nurse Penny, her goal is to normalize death, because, as she says, Death is normal, and we're delighted to have her with us today, so let's not take any more time and say hello to Penny. Hawkins Smith, hello Penny.

Hospice Nurse Penny: 11:57

Hello there.

Susie Singer Carter: 11:59

Hi, Penny. Hi. Thank you for coming and talking to us. I am so

Hospice Nurse Penny: 12:03

happy to be here.

Susie Singer Carter: 12:05

Oh, good. I am so glad because we met on Tiktok, and, you know, you were very bold, and you responded to my to some of my posts, like, you know, girl, get it straight. You don't know what you're talking about, data. I'm like, what? Who is this person? I would I've been, you know, researching for two years. I went through this, so I finally, I thought, you know, we need to talk like get I want to you to come on the show and give me your point of view, because I think it's important, because if we can have a beautiful experience, then let's have it. I mean, we deserve it, right? Yes,

Hospice Nurse Penny: 12:39

yeah. So, so many things I want to address, okay, you know, as far as the reimbursement, first of all, I want to acknowledge that there are bad actors, right? There are always in in any business, healthcare or non healthcare, you can always have somebody who does unscrupulous things and takes advantage of people and, you know, and that can happen in hospice, and it has unfortunately. And of course, a big deal is made about it when it does happen. But there are so many other hospice agencies that that don't operate in that same way. And many, many, many of them are nonprofits. In fact, I've only ever worked for nonprofit hospices, so I know it sounds like this big business thing, and there's all this money to be made, but the reality is routine hospice care only pays around. I think it's 270 or 280 a day per person, and it doesn't matter what we do for that person, we get the same amount of money for every single patient, whether it's a person who is in a nursing home, and we're seeing them maybe every two weeks. The nurse sees them every two weeks. Maybe the aide is going a couple days a week, or three days a week. We get paid the same for that person as we do for somebody who's in their home who has four infusions running. I've had that person. The nurse is going every day. The chaplain is involved, the social worker, the aide is there. Every day, we get paid the same amount of money. It doesn't matter what DME we bring in durable medical equipment, what medications we cover, everything like you're talking about palliative treatment. So let's say we have somebody who does have a tumor that's encroaching on their on their trachea, right? And they can't breathe. And we need to do something. So we want to do debulking with radiation. We're paying for that. If we're putting in a pleurex drain into somebody's abdomen to drain the ascites off, we're paying for that, and it still comes out of that same little $280 a day that we get so and then the other levels of care are also a flat rate. So general inpatient, which is what you were talking about, when somebody has a higher acuity, they might go into a hospital or a hospice care center or a skilled nursing facility so that they can have 24/7 nursing while we get. Their symptoms managed. It's really meant to be short term. The plan is to always stabilize and send them back to wherever they came from, usually their home. Because, you know, when they're at home, we're not managing at home as well. And so we get them into a Care Center. I can tell you personally from working in care centers, there's no money to be made in a hospice care center. A Hospice Care Center really usually has to be supported by an agency that has, like a robust home hospice program as well, because that will carry the hospice care center. In fact, one of the care centers that I worked for had to shut down because it was a nonprofit. It had a foundation that was raising money for it, they were paying for all of this care and the rent and everything else. And it wasn't sustainable. It could not be sustained. There was just not enough money to be made in that. Also, you know, you're talking about Medicaid, Medicare. If a person's in a nursing home and they have Medicaid paying for their room and board. And Medicare comes into the picture. Medicaid still pays for the room and board. So, you know, Medicare, you know, let me again, like, let me give you the caveat. I don't think the hospice program is perfect. I wish it was better. I wish that people could get concurrent treatment.

Susie Singer Carter: 16:20

People do, which means what concurrent to sit for people that so

Hospice Nurse Penny: 16:24

somebody, let's say somebody, has cancer, and we know that they are really at the end of their life, but there's still some treatment they want to try, you know, we should be able to bring them into hospice and allow them to continue that treatment, you know, so that they can kind of make their own mind up about quitting. And it is an elected benefit. People elect hospice. Nobody's forced into it. They're not pushed into it. I think Susie, you had said you felt maybe like you were kind of railroaded into it, or coerced into it, if I remember correctly, and and that's unfortunate, you know? And that's like, that's bad. That's just people marketing. And I hate that. I hate that, you know, people need to have an opportunity to really know what it means to elect the hospice benefit and to make that decision, to come to that place on their own, in their own time. And you know, it doesn't always happen that way, unfortunately, but you know, do you think,

Susie Singer Carter: 17:22

do you think Penny that when you say nonprofit, and I want to, you know, I also want to give a caveat to nonprofit, because, you know, the the experts that we that have done, like forensic accounting on all different kinds of scenarios in terms of private equity and private private equity, like business models, which do, which do actually cover 70% of our country's, you know, nursing home facilities, a lot of them, like my Mother's was, so you know, to the to the public, it looks like it's a nonprofit. It's not when you go deeper and you find out that it's that just one portion of this corporation is a nonprofit, and that they get and there's ways to get around it, and that's why we're all of these experts for decades, have been calling for transparency, because it really is very difficult to find out who the actual owners are, and so there's all kinds of ways to game the system, and that's the problem, because there are amazing, good good there's good actors, and there's good facilities that want to do a good job, but they are. They're beholden to their owners, and they're and those and they're what what is between the owners and those facilities are, you know, it's, there's a, there's a huge chasm between them. So you have these, you know, it's legal. It's really legal money laundering. There's all kinds of related parties that the monies go through and they own these companies. And there's, there's tricks that you know have been around for ever, in terms of this kind of a it's corrupt system. And and vulnerable people are they are targeted. That's the problem. And and people and caregivers like me, when you are at a very emotional level in your in a in a in your life, and you're dealing with someone that you love very much, and so much is happening, and someone says, this is where they should be. This is, this is where they're going to get the best care that they need. And you're like, Sign me up. Okay, I get it, you know? And, and Don you were there with me. It was and it was exactly Penny Well, it was like, yeah, when

Don Priess: 19:40

you have a doctor saying this is where she's going to go, you don't know at the time. You don't have time to say, well, let me go down and start doing some research on this. Your loved one is sitting there, you know, in theory, on their last days, which is what she was told. So we don't have time to go and research. What's the best facility, what's my best option? You know. So education is so important, yet, unfortunately, people don't get themselves educated before all this happens, because we don't know where, so we don't, we don't, we don't, you don't need, not necessarily railroaded. You're just like, this is the only option. You know this this is as far as Susie knew. This was the option. What was the best option? Yeah,

Susie Singer Carter: 20:20

after this, you know, avalanche of horrible things that were happening to my mom. And even though the doctors from the hospital were saying she can get back to her base, she's very strong, she's she's fine. Don't get so dramatic about it, because I was like, Is my mom dying? I was, I wanted to embrace what was going on. No, stop it. She's not dying. Dadada and so. And suddenly I'm like, Oh, she's, she is dying. Wait, what's going on? I'm so confused. Meantime, mom doesn't want to die. Mom's like, you know she's and I'm, I have no idea what to do, and all I want her to do is be not in pain and not to be a zombie either. Like, let's let you know which is the best case. You know, if we have to take her out, let's take her out now. I don't want her to suffer for six months. I certainly didn't want that, you know. And so you're just not given enough information. And it all also to the layman. I'm just giving this to you. Penny is that it feels it's very confusing as well. What's the difference between palliative? Is there a difference between palliative you know, when my mom was rushed to the hospital for the third time because they didn't, wouldn't take the Foley catheter out, and I was saying it, I did research. It doesn't sound like this is a healthy thing. She doesn't need a Foley catheter. She urinates on her own. Sure enough, she's hemorrhaging in her bed, and now she's got to have blood transfusions, and now she's got to be flushed, and that doctor who was attending to her said she needs to go into palliative care. This is why she's not getting cared for. This is why she's not getting the care she needs, because she's in hospice. And I was like, oh, okay, suddenly my mom's moved to another and

Don Priess: 21:54

it's the first time we heard that word ever. We did not hear that the word palliative as an option. Before that, it was just basically hospice. So how do we get around

Hospice Nurse Penny: 22:05

that? Palliative is not well, it's not part of hospice. It's the umbrella. It's a completely separate program. Palliative is not any part of the hospice program. The hospice program is Medicare program is completely separate from palliative, but palliative and hospice are put together like I am a certified palliative and hospice nurse. Because palliative is some people think of palliative as the stepping stone to hospice. It's kind of got a little bit of a similar structure. As far as being interdisciplinary, hospice is one of the hospice is the first medical program that is interdisciplinary, which means that we have nurses, hospice aides, social workers, chaplains, doctors. There's a whole team of people. We do whole person, person centered care. Palliative is similar to that there. It's not just looking at the disease. So Susie, when you're talking about your the doctor is telling you she's not dying. You want to know he's saying, No, she's not dying. Oh, whoops, guess what? She's dying. I went through that with my dad, and I had been a hospice nurse for five years, and I kept telling them every day, I'm a hospice nurse. You can level with me, what is going on? Nobody ever said to me. Here are our two options. One is to treat and the other is for hospice. No one ever said that. And I kept saying, Look, exactly you're treating him for this. Okay, now he's got Pneumocystis Carini. I do a little research somebody with immunocompromised system like he had from steroids from his lung disease, has a 50% chance of survival rate. So I'm like, he's already got a terminal disease. He's already now he's got this infection that's got a 50% survival rate. The doctors are still telling me he's going to be okay. No worries, no problem. He ended up in on a BiPAP in the hospital, and I called his new First of all, I walked into the room and my dad said, it's not looking very good. They're talking about hospice, and I might have a year left to live. And I said, that doesn't make sense, because Hospice is a life expectancy of six months or less. Now, when I say they're talking it's not hospice, it's telling them this. Okay, it's the doctors at the hospital. My mom says, we're so confused, can you please call his pulmonologist? I call the pulmonologist. Yes, he had a respiratory crisis. If it happens again, we'll have to intubate him. I don't think he wants that. I said, I know he doesn't want that. I also found out no one had talked to my dad about his code status. He was still a full code at this point. And I know my both, both my parents, did not want life, you know, prolonging intervention. And I said, Is it time for a hospice consult? And he said, Yeah, it is. My dad died less than 12. Five hours later in the hospital, and I'm a hospice nurse who kept telling the doctors that I needed to know what was going on, because I could sense that something wasn't right. And this is the problem. I mean, it goes deeper than just hospice. It goes into our whole medical system. Percent doctors that are like, this is your only option. They tell cancer patients this all the time, this is your only option. Do everything. What if it wasn't? What if it's like, not do everything, do something else. Like, right? No treatment. You know, like, I can't tell you how many patients I've cared for who did treatment it was futile. They died anyway, and they had a horrible quality of life while they were doing that treatment. So, and that's what hospice can do, is bring you a better quality of life. You know, it's not just comfort care, it's improved quality of life. It's helping people achieve their life goals, whether that's, you know, getting married. We've had hospice weddings, a patient who whose daughter was getting married, and his his goal was to walk her down the aisle. And so part of our care plan was to get him the DME that he needed, so that he could do that, to get his pain managed, so that he could do that. You know, like this is what we do is to try to improve quality of life at the end of life, right? But the

Don Priess: 26:28

system doesn't allow us to get to that. I mean, our system is so difficult. You had, you couldn't get there. You knew what was going on. Our system doesn't allow us, or doesn't give us a big opportunity to get there because we don't know. And we asked 10 different doctors, what is hospice and they all gave us a different answer, including,

Hospice Nurse Penny: 26:46

don't know, because

Susie Singer Carter: 26:48

hospice doctors. But this is we interviewed people from Medicare, Medicaid. Are, you know, hospice doctors, hospice nurses, lawyers, who are also advocates from canner. You might, you might be aware of Cantor, which is in Northern California. So they're, they're citizens and attorneys for Nursing Home Reform. They've been around forever, and, you know, they are, they are there for the they're not, they're not, you know, litigious lawyers. They're there to advocate for quality nursing home care and hospice care, and these are the things that we're hearing is that you know what you're talking about is the ideal and what we hope for. But when I'm told, Oh, your mom's been getting the wrong treatment, this is why, because my mom went into the hospital with a stage four pressure wound when the nursing home, a five star nursing home here in Los Angeles, didn't even tell me, and when I when she got to the hospital, they didn't want to have they didn't want it on their hands. So they were like, your mom is just, you know, she was just admitted with this. And so I called the facility. They said, Didn't happen here. Didn't happen here. And I said, So when did it happen? I'm trying

Hospice Nurse Penny: 28:00

to think it happened, yeah, in the ambulance, of course,

Susie Singer Carter: 28:03

in the ambulance. So, you know that. So she was admitted with sepsis and everything else, because they didn't, they didn't take care of her. She had, you know, she had pneumonia, she had, she was highly dehydrated, you know, you're a nurse, and on and on and on, all of the comorbidities that happened with that and so as a result, she was intubated, which she didn't need to be. But no one asked me, because it was covid. I couldn't get in, you know, she they gave her a G Tube. They gave her a G Tube without asking me, oh, my God. And then so when we finally got her back after horrible things that, you know, just an avalanche of things. And this is why I know I was meant to do this documentary, because Why did all these things happen that shouldn't have happened? You know, I She's back at her at her facility in hospice with a G tube with a catheter, and telling me that she's aspirated so she can't so she's NPO, which is nothing by mouth. And I'm saying my mom is literally dying of thirst. She can swallow, have her assessed. Yeah, okay, we'll look into that. Okay, we'll look into that. Is my mom going to see a wound doctor, because the hospital said she has to have a wound doctor. I mean, even if she's dying from it, get a wound doctor in there and take care of it. Why should she be in that kind of pain? And why should she live if she has six months, which she did, you know, horrible quality of life, we might as well to be not to be dramatic, but to be dramatic. Let's shoot her instead. Because Why should she live six months like a zombie? So, you know, what is? What do you say at the end of the day? Is that follow the money. Why would you keep somebody alive in a zombie state? That's ridiculous.

Hospice Nurse Penny: 29:45

So yeah, and you know, in hospice, I mean, we don't do anything to prolong life, nor do we hasten death. But I don't have a whole lot of good things to say about nursing homes, because I have seen nursing homes keep people alive by shoveling, insuring to their. Mouth. You know, every day, as long as they can get it into them, get them up, get them dressed, get them going, they get paid. That's how they get paid. Nursing homes and hospices are separate. I mean, I would, I would be very reluctant to put somebody into a nursing home and that owned a hospice, unless it's like a hospice care center, dedicated hospice care center, but like a nursing home that also owns a hospice. People don't know this, but you get to choose your hospice. You don't have to have a doctor's referral. You can self refer to hospice, and you can choose your own hospice agency. You do not have to go with the one that you're referred to. You can look up the hospices online at the Medicare Compare website. You can look at their quality scores. You can see like, who is available in your area. Something about California that I think is kind of not great, and it's different than Washington. Is that in California, anybody can open a hospice. I mean, you can just do a hospice right in Washington. It's a certificate of need state, so you have to petition the state and show a good business case for why a hospice is needed in an area, in my area where I live, which is very, very rural, there is one hospice that serves this area. That's it. There are no others, because the states has said there's not enough people to support more than one hospice, which is kind of bad, because we don't get choice, but the hospice that serves as areas top notch. It's one of the best in the state. So no worries there. But so when you have, like in California, these hospices that are just opening up right and left. And you know, like you were saying about the nonprofit following, sometimes there is profit. Now, the ones I've worked for are truly nonprofit. They're right, huge organizations that put the money into other programs that are very underfunded. Right? Palliative care is not funded very well, for one. But like there are also for profit hospices, and those are, in my mind, the worst, because they tend to put in a lot of a lot of things into place in the beginning, a lot of help, and then they pull back on it, you know. So that's how they get their money. But so I think that's kind of one thing about California that's different, and unfortunately, so then you're going to get a lot more people who are trying to look for money. And again, there are some hospice agencies. We know about them, they were highly publicized, who have done things to get money. They've falsified certificates of terminal illness, and Medicare is constantly trying to improve the program. There are some things that they have done to really try to improve the program. One is they reduce the rate after day 61 so when a person is on hospice for the first 61 days, they get a little bit higher rate for routine hospice care at 62 days and beyond, it drops down because Medicare figures we get them into the program, we get all these things in place. Now you're just sailing along. And you know, you can kind of, you don't need as much overhead. So they've done that. They're also now doing a pilot program where they're allowing some hospice patients to receive dialysis. Unfortunately, when people have kidney disease and they're on dialysis, they can't qualify for hospice if they're doing the dialysis, and when they stop the dialysis, they have a very, very, very short life expectancy, like three weeks or less, so they don't even get to benefit from the hospice program, because they die so quickly. So Medicare is looking at that and going, maybe we can go ahead and do dialysis for a while for these people so that they can have an opportunity to take advantage of the hospice program. But the reality of hospice is, you know, you have a life expectancy of six months or less. People can stay on longer than that. Happens a lot. We don't know when people are going to die, as long as they meet that eligibility at any given time during their hospice stay, they can be on. We've had patients on for one year, two years. I saw one for five years once. But the average length of stay is like 82 days. And the median length, the median length of stay is like 47 days. So people have this life expectancy of six months or less, but not very many of them actually reach that or exceed that. They usually die quicker, and that goes back to the hospitals not being willing to talk about, you know, the D word that's going to happen to every single one of us until the person is already like at death's door or close to it. Yeah,

Susie Singer Carter: 34:44

right. Go on, Don were you gonna say something? No, it's

Don Priess: 34:47

gonna say You said something. You said one sentence a little ways back that was so important. You said, people don't know this, but you can choose your own hospice. That's exactly right. People don't know it because we're not. Not told it. And also, you know, as far as the nursing home and being owned by the hospital, being nursed by the nursing home, that happened in Susie's situation, but they're named something different. The hospice has a different name. So you think, Oh, that's a different hospital. And they're just, this is where they you know, it's so confusing. They're

Susie Singer Carter: 35:18

also under, so confused, also under a name. I won't say, I can't say it because I will not say it on my on my show. But, you know, they are a very respected organization here in Los Angeles, and, you know, in the community, and so, so it has a great name. You think, Oh, bloody blah, my mom's in great hands, you know. And, and also, oh, she's going to be, she's going to have the help from the nursing home as well as the hospice team. But the hospice team it, it was, you know, initially, when we first met the social worker, it sounded like the best thing ever, and then, like the doctor was the she told us, this doctor is a few, she's a she's a feminist rock star. She goes at least once a week. Well, she never met my mom once. She told me she doesn't. In six months, she said she'd never she said, your mom's gonna do Let's take her off. I said, I want my mom off the G Tube. She can eat. She wants to eat. That's her life. She likes eating. Let her eat, please. And she said, you know? Yeah, I want to take her up, but we're gonna then, don't feed her. Let's just let her die. And I said, What is wrong with you people? And she said, I know you don't want to hear this, but that's what, that's my opinion. I said, but you haven't even seen her. And I said, Can we get a, you know, an evaluation. Let's evaluate this before you make a decision. We'll look into it. We'll look into we'll look into it. We'll look into it, you know. And also with, with, you know. And then it's then you get like, well, if you're not happy here, you can take her home. Well, no, I can't take her home now, because her acuity is so high. Look what you did to her. You got her here when she wasn't like that so, and it's not due to her Alzheimer's. This is neglect. This is the hallmark of neglect, right? And I and I know Penny that the weather, the way that you described it, which is why I wanted to talk to you so bad, is that that's the way it should be. That's the way that should be,

Don Priess: 37:11

the way you do it, the way you do

Hospice Nurse Penny: 37:13

you're breaking my heart. Susie, I have to tell you, I'm just about ready to lose it, because I what, what you got was not hospice. I mean, the fact that they told you that if they pulled the tube, that you couldn't feed it like you the hospice, Medicare, hospice regulations say that we are supposed to be providing, you know, therapists to determine these they should have, they should have had a speech therapist come in there, and

Don Priess: 37:44

she asked for it

Hospice Nurse Penny: 37:46

every day. Was not hospice.

Susie Singer Carter: 37:50

It took me seven weeks to get a nurse to finally get it. Was on my mother's birthday two years ago, on April 1, and they finally got someone in because one of the nurses took pity on me. She was like, I'm gonna, I'll call her in. The girl came in. I loved her. She was very sweet, but she did a two finger test and said, Yeah, she can't swallow. I said, What? Wait a minute. Let me show you I've been sneaking, you know, drinks to her. And I show her and my mom. Because, first of all, I was like, why you have your fingers here, you know? So I show her into my mom's like, look like she always did, and she goes, Oh, she can swallow. Well, I'm going to allow you to let her suck on a sponge, but nobody else, because I don't

Hospice Nurse Penny: 38:29

that is not hospice. That's not what we we educate about the risk of aspiration. And then if you want to continue to give that person something by mouth, then you can, like we had, I wanted

Susie Singer Carter: 38:40

to sign something. We had a patient. She

Don Priess: 38:42

said, I'll sign a waiver. And she said, they said, No, we No, no, no, no, and take her home. If they take her home then, or finally, she's they said, We don't trust any of our staff to do this. So to do it, be you and to do with the spine, I

Susie Singer Carter: 38:56

know I'm gonna let you talk, Teddy, but I just want to say that, yeah, she that. Since then, I've, I have, and this is, and you'll know this as a nurse, that you know, G tubes cause more aspiration than anything else, because, yes, it's actually food. It's actually coming up. Whereas, if you're giving someone water or juice, we all aspirate on water every once in a while, you know it's okay anyway, go on,

Hospice Nurse Penny: 39:17

because tube feeding, because the as a body shutting down too, it's not going to absorb the tube feeding and that tube feeding, then can I have suction tube feeding formula out of a trach, out of a person, because the family kind of continued to want to tube feed even when the person was really close to the end of life. But we had a patient at our hospice care center who, culturally, they feed this, like, really thin soup at the end of life. For these in this culture, and I don't remember, I think it was an Asian culture, but they were feeding soup at the end of life. And we just educate them, look, you know what? There's a writ because this guy, I mean, he was pretty unresponsive, and they're still shoveling soup in his mouth. And we just have to say, look, you know. Um, we don't recommend it because he could aspirate. That's that's what we're just telling you, okay and and then let them, if they want to do it, they do it. I gave a guy a popsicle at the end of his life, he had been in the hospital. Came over to the care center. I asked his daughter, how are you guys doing? She said, Well, we're okay, but he really wants a popsicle. And I said, Well, I can get him a popsicle. And she said, Well, they said at the hospital you can't have one because he'll aspirate. And I said, Well, he's on hospice, so, and she said, and she said, yeah, so I gave him a blue raspberry popsicle, and he right on. Did? He loved it, you know? So, like, also, I want to say something about the doc. You know, the hospice doctors hardly ever visit the patient. That's actually normal for the hos. It's the hospice nurse who is the liaison, you know, like we are the ones who who are there with their eyes and ears on on the patient, and we report back to the doctor and we get the orders. And sometimes, if it's a community doctor that's managing the care, we make the recommendations on on things, because we know better. And I always say, if you want to know when a person is going to is more likely to die, don't ask the doctor, ask the hospice nurse, because we see it all the time. People and doctors in the hospital, they don't, they don't see it as much. They see it in the ICU, that's a very different looking death. They see it in the ER, that's a very different looking death than a natural death, you know. And so don you were saying, like I said, people don't know this. The problem is, in the hospital, they don't speak for hospice because they don't know. And when you get your hospice referral coming in there, they're not going to tell you that you get a choice. They're supposed to. They should be saying, by the way, you don't have to go with our agency. You can find another one. But they but they're not. They don't tell you that if you don't like your hospice, like Susie, you could have transferred to a different hospice. They probably didn't tell you that you can do that the nursing home, just because the nursing home is owned by the hospice agency, and that's their hospice agency. You don't have to go with that hospice agency. They can't they can't force you to use their hospice agency because your mom is in their nursing home. They can't do that. It's not legal, you know. So there's all these things, like, you have the right to revoke hospice at any time. You can say, You know what I'm done with hospice. I'm taking my mom back to the hospital. You know, like people have the right to do that and, but, but, yeah, not everybody knows that, which is why I'm on social media education,

Susie Singer Carter: 42:35

which is why we're doing this. Yeah, thank you. And that's why we're doing the documentary, because you also have rights to decide how you as either you or your surrogate, how you want to, you know, what kind of treatments you want, whether you like, my mom wanted to eat and I said she wants to eat, and we will sign a, you know, a waiver of to mitigate any kind of, you Know, responsibility on your part, we will take full responsibility. This is what we want. Absolutely not, absolutely not. Now, I didn't know what my legal, you know, rights were at the time, because you kind of don't think these that in this arena, in this kind of business industry, that you're going to be lied to for what to what end, I didn't think I didn't have my, you know, my, my, those, those lenses on at the moment, I had the lens of, how do I take care of my mommy, right? And how do I make her have the best days of her life at the end, you know, like, as beautiful as possible. And, and it was I didn't, it's so it is horrible to be out there floundering and not really knowing what what to do, and you're only trying to do the best, and you're not trying to cast blame. You're trying to be a nice person, and you're trying to just, you know, you really because you

Don Priess: 43:55

don't want to ruffle feathers, and all of a sudden they're, you know, then there's retaliation, yeah, all those good things.

Susie Singer Carter: 44:00

Oh god, I people hated me after a while. I walked in and was like, and I used to, and you were nice. I was nice. I used to go in and sing every weekend for the for the residents, you know, and like, and was I loved going and visiting. I walked in and it was like, you know, yeah, I was like, frozen, you know, suddenly I was, I was, I was on a and, and I would, I had no idea, but I and I could have been tougher. I should have been tougher. I should have demanded more, but I didn't, because I didn't know my rights. And I all I knew is that my mom, when the when the hospice nurse would come in, or the social worker would text me, go mom looked great. We were there today. She looks comfortable. I would go there later in the afternoon, she's in a hot room, facing a wall. Hasn't been turned the music that I asked to keep on wasn't on. She's lying there, like, like a, like, a lump of rice, like nothing, like no, like, no quality of life at all. So, and also,

Don Priess: 44:57

yeah, the bedside manner also is so important. The beds of the one of the nurses, because some of them literally treated her like a piece of furniture when they were, like, turning her whatever, like, as if she didn't, wasn't even there when they'd hurt her, like they caused something that would cause her pain, not like, Oh, I'm sorry, you know, I'm sorry, honey. And she would, you know, you feel that. And that's so completely opposite. When I heard she was going to hospice. I had, in my mind, hospice in a comfortable bed, there's flowers, there's music, there's lovely nurses who care like you and and it was just so completely polar opposite. It was shocking. And I know that's not everyone, but there's still, like you said, there's, you know, there's a lot of unregulated, you know, or, or when they're it's the same, you know, facility as the there's so too much of that. How can we get more of what you're doing out there?

Hospice Nurse Penny: 45:56

By knowing what you can what you can ask for and knowing your rights. I mean, really, that's, that's how and nursing home, I mean, so, like, I know your hospice was awful, obviously, but also the nursing home part of it, like it typically, the nursing home is separate from hospice. So where I'm at, if I have a patient that's in a nursing home, you know, I'm going in there to do my thing with the patient, and then I am managing the plan of care. But when I'm not there, I have no control over what the nursing home is doing. And I I recognize that, you know, you said something about five, five years ago. Since five years ago, nursing homes have started to be bad. It's been longer than that, because when I became a nurse, which was about 20 years ago, I decided that I was either going to be a hospice nurse or I was going to work in nursing homes. Because at that time, there was abuse going on in nursing homes, and I thought, I want to go somewhere where I can really make a difference. So nursing home was my second choice, because there was so much abuse happening. We were hearing about it all the time. You know my mother in law documentaries

Susie Singer Carter: 47:04

about, yeah, I just want to correct you and say I didn't, not. It wasn't the nursing homes that were getting bad in the past five years. It was hospice Oh, yeah, because nursing homes have been bad for 50 years. Yeah. More, yeah, yeah, yeah.

Hospice Nurse Penny: 47:17

My mother in law is in a in a nursing home. It's, it's owned by a huge it wasn't when we put her there, but it's now owned by a huge corporation. We're constantly on their case, and I'm a nurse, so I know what to ask for. I know what to do. You know, if I wasn't, she probably wouldn't be getting as good of care. But you know, it's, you just have to walk in a nursing home and know that it is not the place to be. But like you, with your mom, Susie, we didn't other option. You know, my husband and I both work. All her other kids work. It's a lot of care to take care of somebody. It's a lot of care.

Susie Singer Carter: 47:58

I was just going to ask you that because, you know, people on on social media who don't know, don't understand, haven't been through they'll say, Well, I wouldn't do that to my mom. Take care of her. I would take care of her like they took care of you. And I was like, Oh, my God, are you kidding me? This is my favorite person in my whole in the whole world. I would do anything for her. Yeah, I can't. Yeah, there's something. Yeah,

Hospice Nurse Penny: 48:24

I couldn't do it. My mother in law had an altered mental status. She went into the hospital. They she was there for about a week, and they were, of course, trying to get her discharged as fast as possible. What's the discharge? But I said, Okay, I'm a nurse. We'll take her home. I'll take care of her. We'll do it. We'll make it work. She was at our home for one day. She was confused, and in the middle of the night, she fell I called 911 I said, take her back to the hospital. The nurse at the hospital said, We're discharging her back home with you. And I said, No, you're not. She's not going back home with me because there's something still wrong with her. You discharged her too early, and we need her to be better before she goes back home, because we can't take care of her like this. And I am a nurse, so I am very sensitive to the fact that that one people have to sometimes put their person who they love so much more than anything, into a nursing home, into an adult family home or like a board and care, I think, is what you call them in California, you know, or assisted living, or we have to do it, and those who are able to take care of them at home often sacrifice their own health to do so. You know how you hear about somebody that died and then a year later their spouse died? It's because you have an elderly person who's on hospice and their elderly spouse is taking care of them to the detriment of their own health, and then now they're gonna die because they were not able to, you know, take care of themselves while they're taking care of their person. There is another problem with the Medicare Hospice Benefit. I will 100% Absolutely. I love, I love. The name of your documentary. What is it? No, No Country for Old people, right? Yeah, because it's true. It's so true. We have an aging population that and we don't know what to do with them. People are living longer because we can make them live longer and, right, keep them living as long as we can. And and there's what do you do with them,

Susie Singer Carter: 50:20

right? Exactly. That's the problem. There's ageism and ableism. And we have these people that you know, and that's why they fall prey to a corporate, corporate situation, because they voiceless. There's a lot of misunderstanding, you know, and the families you know are they want to believe? Who wants to believe their family members not getting the right help, and who wants to believe that they're doing a bad thing? We want you know, that's why we look to these experts. I'm a writer. I write films, I you know some, I bring me that I'm your expert there, right? I don't I'm not a doctor, but I did know my mom, and I did, as a human being, have instinct and intuition. I'm a mother myself. I knew when she's ready to die. I knew it. And I said, Mom, my I will know when my mom's ready to die. I 100% I will know. And I did know. And I told her the night before she left, I knew she was dying. I said, You taught me how to live, and now you've taught me how to die, you know. And I think that she she she was a rock star, but she really wasn't ready. And that's that is the proof is that she lasted six months under such horrible conditions, and I fought for her so hard, and I couldn't make a change. So how do if we have hospice at home? And I've heard people in different states that I've interviewed that said, you know, home hospice was wonderful, and other people that said it was awful, like they they didn't show up when they were supposed to show up. They didn't provide the kind of medication that they would hoped for. So how I mean, do you think that home hospice is better if you can and and there, and will you agree that there, there's sometimes home hospice is impossible for the families. Am I right or wrong? Yeah, no, you're

Hospice Nurse Penny: 52:05

right. You're right. I mean, home is the best place to be if you're dying who doesn't want to die in their own home, but it's hard for the caregivers. Ideally, there would be, you know, there would be some kind of program that could pay for caregivers to come in. Now there is Medicaid does do that for people who don't have money, and then if you have money, you can pay for it privately. And if you're someone like me who's right in the middle of the road, then you're screwed, right? You can't Middle America cannot afford caregiving, and they can't get the free help from the state. So we're doing all the caregiving. So you know, it really depends on the experience that the person has with the hospice agency, how good the hospice is. A lot of people have this expectation that they're going to have a nurse coming in doing all the care and and that is not how it works. We are teaching the family how to care for the person. We're educating. We are normalizing, you know about what to expect, so that they're not afraid. We're helping them, like learn how to actually do the hands on care. And we do hand hands on care as well. You know, we assess and we and we will do care, changing catheters, accessing parts, doing that kind of thing, to wound care, whatever. But we don't do 24/7, care. It's just the Medicare benefit does not allow for that. There's not the money for that, unless it's a continuous care situation, which, again, is like that General Inpatient where we put someone in a hospice care center. It's very time limited. It is you get, you know, a nurse to come in and get these symptoms managed, and once they're managed, we're out of there, and we're just going to keep checking in, checking in. So, you know, I It's, I hate to I hate to give people homework. But again, it boils down to understanding what you are entitled to through the hospice Medicare benefit, and knowing how to advocate for that, and knowing that you know, if you don't like what you're getting from the hospice you're with, that you can get in, you can go to another hospice, and should also be reporting that hospice to CMS, to the Medicare services, because we did, yeah, I mean, they should be reported if they're not doing what their enforcement

Don Priess: 54:16

is not, and CMS is enforcement. This

Susie Singer Carter: 54:19

is the problem with that's why we're doing the documentary. It's, it's, it's the opposite of not great, and that's the problem. It's horrible, um, or non existent. Oh, shoot, I had a question. Um, wait, wait, wait, well, while

Don Priess: 54:32

you're thinking, Should I ask a question? Yes, go ahead. Okay, so, so you to Where's, where's the great resources for people to do their homework.

Hospice Nurse Penny: 54:41

Well, the Medicare Compare websites like medicare.gov, compare, dash, I can't remember, what is you Google Medicare compare, and you'll find it and you can and this is not just for hospices. It's for nursing homes. It's for hospitals. You can put in your zip code and it will. Bring up all of the Medicare certified agencies in your area. I say never, ever go with a hospice that is not Medicare certified. You want a Medicare certified hospice? Because even with as little oversight as they have, they have more oversight than somebody who's not Medicare certified. So that's a start, to be able to go and see like, what are their ratings? How are they doing? Like in their quality ratings? The Medicare Hospice program is is very focused on quality of care, and we are required to have a quality program. That's what I do. Now I'm a quality nurse. Now we have to do performance improvement projects. We have to monitor data we like there is a lot we have to do for quality of care with Medicare. The other thing you can look at is the national Hospice and Palliative Care Organization, the nhpco.org they also have a lot of information in there for caregivers. So I recommend that website as well,

Susie Singer Carter: 55:58

and how. And you know, you were saying like, the like. So just, just to, just to clarify what we were told from all of our experts, the daily rate for hospice under Medicare is, is quite a bit different than what you were saying Penny. So I'm, I'm just encouraging people to go out and and, you know, do your research. How can we find out, you know, how much our hospice is getting paid by Medicare? Is there a way to do that, like a daily rate, that it's publicly

Hospice Nurse Penny: 56:25

available. You can find it on the internet. It's publicly available. It's, let me think of the name of what it's called, The something rule, but yeah, you can find it, and it'll get it'll give you the rate for there's four different levels of hospice care. There is the routine hospice care, that's the one that's around like 280 a day. And then there's general inpatient, that's the acute care that's significantly more like 1000 $1,100 a day. Again, very time limited. You have to meet, you have to meet criteria for that level of care, and they are very strict about that, then there's a respite level of care. So this is another thing people don't know. If you have your person at home and you need a break for whatever reason, you need to go to a family reunion or a wedding, or you're sick or you're tired, you can put your person into a contracted facility with the hospice agency for five midnights, and that is covered by the respite benefit, that's for the family. And then there's continuous care, which is when they can bring someone into the home to like I had a patient we did continuous care on she was a young woman. We had all kinds of infusions going on her. And that pays more, and it pays per hour, not, not per day,

Susie Singer Carter: 57:46

right, right? Okay, so that really clarifies that that's really great, yeah, to to understand, because I think you know, and this is the problem that, because we don't know, we can get taken advantage of and be told that this is going to happen, like when my mom was put into palliative, which honestly, like you've just described palliative very, very differently, which is the way that I pictured it, is how you described it, is that, you know, it's a separate program, right? And when my mom was supposedly transferred from hospice to palliative, suddenly she's on a different floor, and now a new social worker came in and said, Now your mom, these are all the programs that she's gonna she's, you know, are available to her, you know, all kinds of therapies. And by the way, none of them, nobody came in for them. I couldn't get them. You know, it was just sort of just, you know, the rundown sales pitch, the sales pitch, and then I never, and other of experts who are in this field have said they describe it different than you. So it's like the palliative is the umbrella for for hospice, for all kinds of comfort care. See, this is audience. This is

Hospice Nurse Penny: 58:59

completely different palliative palliative is also like, you can have treatment while you're on palliative care you can't when you're in hospice. You know, like they're they're really closely linked, but they're not the same program at all, not at all, although some like my hospice agencies, we do have palliative programs in my hospice So, but it's not the same. It's not the same, it's completely different. There we have a palliative program and we have a hospice program, right?

Susie Singer Carter: 59:29

See, that's how I pictured it, because I was like, okay, hallelujah, it's been four months, and my mom's been suffering. She's going to go into palliative and now she can get a wound back and a wound, and

Hospice Nurse Penny: 59:38

it may she should have been, she should have been able to do that. Yeah, right. And

Susie Singer Carter: 59:41

the whole thing that she actually needed, that I was begging for, because obviously they didn't want to pay for it. So, you know, this is what we were going through and, and, yeah, I think it's well, and

Hospice Nurse Penny: 59:52

it's not, in your case, I'd say they didn't want to pay for it, but, and we don't do wound vacs either, because, you know, we do palliative. Of wound care. What are what? We know that. You know the skin is an organ, and when a person is dying, their organs are shutting down, and they're going to get wounds. We have something called a Kennedy ulcer that patients can get where their skin is just it's beyond a stage four, it melts away. You can see their bone. You can see their tendons. We can't fix that. Their nutritional status is in the tank. There's no, no way we can fix that. And so we do what we can do to make sure that the person is comfortable, you know, as pain free as possible. There's no smell, you know, from the wound. We do what we can palliatively, so we can't cure it, and so that's why we won't do a wound vac. But also, I want to tell you something, you know, I know it seems like that the government's not doing anything about these bad actors, but I can tell you from my experience in my agencies that I work for are top notch. They are. There's nothing you know, we're above board on everything, like we don't do anything we're not supposed to be doing. We've been audited multiple times. They read our documentation if a person did not qualify for hospice, if they did not qualify for General Inpatient level of care, we pay back money. Sometimes it's hundreds of 1000s of dollars, sometimes it's millions of dollars. It happens I more than one hospice agency that I have worked for has had to pay back money. The first one was probably about like 16 or 17 years ago, and I will never forget, we weren't on an EMR electronic medical record at that time. It was all paper. They were in our conference room. There were charts spread from one end of the table to the next, like all this long tables all pushed together with all these charts, and we had to pay back millions of dollars because we had patients who they said did not qualify for hospice,

Susie Singer Carter: 1:01:45

and we, we were they not, did they not qualify? Or do? Who? Whose mistake was it?

Hospice Nurse Penny: 1:01:50

So it was, it was our well, it was. So here's the problem. It's like, it's a mistake, according to Medicare, but these are patients with dementia, and dementia is insidious. You never know how long it's going to last. It's very, very hard to prognosticate dementia patients right. They can go for years with dementia, and you think that they're failing, and what happens a lot of times is they'll get an infection. And we have guidelines we have to follow that determine like, if a person is likely to live six months or less. There's a special guideline that we look at so they're failing. They get an infection, they go to the hospital, and we're like, okay, they they're going to need to go on hospice. It looks like they're really at the end. Now, they get antibiotics when they're in the hospital, then they come home and they're on hospice, and guess what? Those antibiotics kick in and they live longer. And we're like, ooh, like, what do we do? We need to kind of watch and wait a little bit. We need to make sure Medicare says from the moment that you determine that a person is no longer eligible for hospice, you have to discharge them. Well, we're in this position where now we have this person in hospice. We've got all this equipment in there support for the family. And are they gonna Are they just having a good little rally and they're going to dive again? Or what's going on? You know? It's very, very tricky. Or we'll keep them on for a while, and then they start to improve, and we're like, ready to discharge them, and then they fall, and something happens, and we keep them on longer, you know, and Medicare will say, at any given time, if they didn't have a life expectancy of six months or less, they don't qualify for hospice. So it's really tricky. And, you

Susie Singer Carter: 1:03:23

know, can I just say, you know, for someone who caregiver, for someone who had Alzheimer's for 16 years, that's a very long time, and her progression was very slow, obviously. And so, you know, I really have an issue that I've since learned of this one size fits all for, you know, to to to, you know, say, Well, this is generally what happens to people with dementia. Well, you can't generalize it, because everybody's, you know, some people get dementia early onset, and they die very quickly. Some people get it very, you know, a long time, like my mom got it in her early 70s, and, you know, and it lasted a very long time. And so I watched her, but I watched her so carefully, like I didn't want her to live past where she should be living. Who would want that? That would be cruel, right? And so I

Hospice Nurse Penny: 1:04:10

you have a great attitude, Susie, but lot, not everybody, not everybody feels. So I understand

Susie Singer Carter: 1:04:16

that. And it can go either way. Some people push their family member out the door, kick them out, whether you know, they're old and they have directions, you know, and I've seen that too. It happened in our family, right? But I can I ask you one other, you know, professional question, because, and I'm going to get a little bit, you know, selfish here with my question, but I think a lot of people will learn benefit from this. Is that when my mom after her first, her second, she was, she was she was discharged too early on that first hospitalization, she had to go back, and then she was discharged. And long story short, but she ended up having to go to a emergency hospital because they, for some reason, didn't send her back to they to the regular hospital, and she ended up in you. In a very small emergency hospital here in Los Angeles that I didn't know that they were notoriously not good, and I had already, at that point said I gave a directive of no intubation, no more intubation. I do not want her intubated if she can't breathe on her own, then that she cannot breathe on her own. And so when I got to the hospital, guess what? They had intubated her. So I get Uh huh. So I get a call from the doctor, the ER because they told me to go home, because only one ER doctor and they would call me the next day, not that day. The next day, I get a call from the ER doctor. You just say your mom is on life support. What do you want to do? Well, okay, I didn't know she was going to be on life support. That's not the last I heard. But let me get my family together. And you know, of course, we don't want to keep her on life support anyway. Long story short, we My family comes together. We say, of course, we don't want her on life support. Take her off of the breathing tube. And I say, one of my questions is, how long do you think it will be? You know, what should we expect? And, you know, he said the in the state she's in two hours a day tops. So, you know. And so they had turned off her G Tube. They turned off any oxygen, any oxygen, everything, you know, nothing. She had nothing. Four days later. And I know we talk about rally, and I know what rally is i Well, first of all, let's just preface this by saying my niece came. Who's when i She said, Oh, nanny's not feeling anything. She's they've got her on it, on a fentanyl drip. And I was like, Why is she on a fentanyl drip? And I called the doctor, and he said, Oh, because she's allergic to morphine. Well, first of all, she's not allergic to morphine, okay, but why is she even on? She's not in pain. Mom wasn't in pain. And if we're letting her die naturally, if it was, if it was, you know, and I'm learning all these terms, if it was, you know, a lack of, what is it an oxygen when she has a oxygen, hypoxia, yeah, then that would be one thing, but I get that, but it wasn't that there was something wrong. Something hit me wrong about it. So four days later, we're sitting vigil, vigil with her, and my nephew's there, and we all love her so much. And she looked like she was dying, like her mouth was like, you know, the jaw was down to her belly button, right? And she and we were like, you know, just, I literally my daughters and I were, like, pushing her over to the other side, like, it's okay. We love you go, you know. And I mean, my daughter suffered incredible, horrible, you know, depression after that, because she felt like she was like, accomplice, you know, trying to kill my mom before she was ready. And my mom out of nowhere, my nephew said, Aunt Susie, I don't think nanny's dying. Look at her. And I went, this is like, at three in the morning, and my mom is, like, wide awake. She's like, and I'm like, she's like, hallelujah. What? I'm hungry. And I'm like, Oh my God. I go, Mom, you're a troublemaker. You're a freaking troublemaker. What is going on here, right? I call the doctor. The doctor tells me that she is, he said, what I've never seen this is he goes, Well, first of all, I just want you to understand that by now, her organs are starting to shut down, and there's no turning back. I said, Okay, well, can we, can we test that? Just so I know that that's the truth is that they are shut down. And he said, Yeah, we can do that. So my daughter and I went to, like a local hotel just to take a shower. By the time we got back, my and he said he was going to take her off of the fentanyl for now. And so by the time we got back, my mom, my mother, was back to the jaw, down to her belly button. And we said, why? What? Okay, is this that she was rallying what's going on? The nurse comes running. She goes up taking your mom off of fentanyl doctor's orders. And I said, Well, I thought she was supposed to be off the fentanyl. No, he came this morning to see her, and he said, to up the fentanyl every half hour. And then when I when he came to see me, he said, So you're right, your mom's organs haven't shut down, so I'm going to start the feeding tube back up, and we'll release her and get her back to the and put her in hospice. That's when hospice came into the play. So

Hospice Nurse Penny: 1:09:13

this thing about then she lived longer after that, six

Unknown: 1:09:16

months, six months. So

Hospice Nurse Penny: 1:09:20

I mean, I've never worked in the ICU, but I think it's pretty standard to put somebody who's into extubated onto some kind of a drip, because they could experience respiratory crisis. And even if a person is actively dying, you know, we still want to make sure that we're managing any symptoms that they're having so that they can be comfortable. So I think that's pretty standard, but it definitely sounds like she was probably a little over medicated. When

Don Priess: 1:09:47

they took her off the ventilator. She was breathing fine. She had oxygen. Was fine, you know. And in fact, he said, everything's back to normal. I goes, I've never seen this.

Susie Singer Carter: 1:09:55

He literally said, Penny. He goes, I've never seen this before. It's a miracle. It's a miracle like that. And I was like, I can't believe it planning, am I on? I

Hospice Nurse Penny: 1:10:05

know I can't believe they intubated her when you I mean, I believe you don't. You know twice well that she when you told them not to. And I just, I feel like you have a lawsuit. Like, what the hell you were her? I'm assuming you were her healthcare representative,

Susie Singer Carter: 1:10:22

right person, legally? Yes. I mean,

Hospice Nurse Penny: 1:10:26

I don't understand how they were doing all of these things, even when you expressly said, don't it's one thing, if you don't say, do it, you know, like, if you don't say, Don't do it, because they're going to err on the side of life, they always do. But if you're saying, Don't do it, and then they do it. I mean, that's unethical. And I'll tell you something else about withdrawing so and you were comfortable with it, and that's great, but sometimes people have a really hard time withdrawing. It's easier to say don't do it than it is to say, take it out. Because when a person has an event, it's and you don't do an intervention, they're dying from that in that event, right? They're gonna die from whatever happened to them. But when you, like, say, put in a feeding tube, and then you feed them for a week or two, and then you're like, oh, things aren't going well, let's pull the feeding tube. You're so far away from that event that it now feels like you're starving the person to death, and you made the decision to do that, and it's so much more personal. And, you know, it's just a harder thing to do than to to just say, Don't do it in the first place,

Susie Singer Carter: 1:11:32

right? And I would have, you know, listen, I'm not, I'm not a doctor, but I would have known that if my mom stopped eating, if she went like this, you know, turned her head, but my mother was a, like a, like a baby, used to break my heart, because I'd come in and go, morning, Mommy, I'm here, and she'd have, as you probably know, as a nurse in hospice, because she was on MPO there, there was like clogs of like mucus that were stuck to the top of her mouth, in the back of her throat, that I had to pry out first,

Don Priess: 1:12:01

because she was so uncomfortable, they weren't

Susie Singer Carter: 1:12:05

doing it. Open her mouth, up like this, like a little bird, and go like that. To show me, I go, I know, I'm gonna get it out. I'll get it out. And then I give her juice. She was just, you know, just, there was no life until I walked in. And then I'd give her juice, and she'd go like that. It's heartbreaking. Yeah, it's heartbreaking. My

Hospice Nurse Penny: 1:12:24

dad was Was he loved food too. He grew up really poor in Texas, and then he went in the military and really made a good life for himself, and worked at Boeing for a long time, and died when he was 69 and he loved to eat. Loved to eat, and that was the one thing we always say hospice did for us was when he was in the hospital, he was on a fluid restriction, he was on a diabetic diet. He was just miserable. And as soon as we got the hospice consult, I was like, here's your Dr Pepper. Called my sister. We need a big, huge vente, Starbucks. Stat. We went to an all you can eat buffet that's called the Golden Corral. It's like the all you can eat meat buffet. We piled that plate with meat, took it back to him. He had a really great last meal. My sister and I still morbidly joked that we think we might have killed him with that last meal, because it was just outrageously huge. But he What a way to go. Ate it, you know, and then he told the nurse that evening, I'm about ready to hang it up. And she went to go get some Lorazepam for him. She came back in, he was having agonal breasts, and he died. None of us were there. We'd already said goodbye. The plan was to take him home. The next day. I was going to be his hospice nurse. We were going to take him home. I was completely blindsided. I had no idea that he was going to die that fast. It was, I couldn't believe it, but it was the way he wanted to go. He was just ready. He was like, I'm

Susie Singer Carter: 1:13:47

out of here. That's so important. It's like, you know, we interviewed people that have been on MPO that, you know, have had to do it, that are caught, you know, cognitively, very healthy, and said it, nobody wants to live like that there that is not a quality of life. You know, there's when, and especially if you are toward at the end of your life, in your last chapter, your last you know, in your Epilog really, there's nothing that is a visceral life. Thing is to eat. It is what it is the last joy that we have next to music and, you know, those and touch and and it was like, why would you want to take that away from anybody? It doesn't make any sense to me. You know,

Don Priess: 1:14:31

they give death toll prisoners their final last meal. They give death toll prisoners last meal, anything they want. Why do you think they do that? Because that's in as a human being, that's that's their last joy, and that's so why would we deprive our loved ones anything? But that, it does not make any sense, that is live an extra day. Yeah,

Hospice Nurse Penny: 1:14:52

that's one of the big myths about hospice. And obviously it wasn't a myth, in your case, Susie, it was. It was your reality. But. That we starve people and no, we want people to enjoy whatever they want to have at the last part of their life. Usually they don't want too much because they're dying, and their dying body doesn't need food, but we encourage them to eat whatever they want. Like you don't need to be on a diabetic diet anymore. If you're on hospice, you can have whatever you want, you know, and food. Food Food is love. Like we celebrate with food at funerals. We eat food at weddings, birthdays. You know, it is love, and it's the one thing that family can do for their person, that's you don't have to be medical to give somebody food. You know, you can give them. But a lot of times, people have a hard time letting go of food when, when the person is dying and and feeling like, now that they're not eating, they're going to starve to death, and that's going to be painful, you know? And we say, no, they're not going to starve to death, they're not, they're not. They're going to die from their disease. They're not going to die from starvation, you know, it's just part of the process.

Susie Singer Carter: 1:15:57

When you're ill, like when I'm ill, I don't feel like eating, like, you know, right? So exactly, and you know, I'm not gonna have my family's not gonna come and go. You have to eat. Eat this. No, I'm gonna, you know, it's like, you don't want to eat. You don't feel like it. If you're close your mouth. When I'm depressed, I don't want to eat like that. You can't get a morsel in my mouth and I'm depressed. That's just the way. I'm the

Hospice Nurse Penny: 1:16:16

opposite man. I'll eat in the damn house if I'm depressed. I know

Susie Singer Carter: 1:16:21

there's two ways to go. Yeah, there's both ways. It's either like me, Don knows me forever. I'm like, I can't, he'll go, do you want a little No, don't I don't want anything. Like, I cannot eat when I'm depressed. But I mean, I mean, I looked for those signs in my mom. I looked for those and I knew I was, you know, those are, those are things that you know, as a human being, that's instinctual, like, if someone doesn't want to eat, why would you force them, unless they were, you know, unless you had a doctor going, listen, this is a little baby that has to have this nutrition, and then you would do it, you know, intravenously, whatever the case may be. I'm getting off topic, but the point is, what else, anything else you want to say about our conversation? And I really am so appreciative. I could talk to you for like, two more hours just so I could just, I could just be cathartic with you so you can go, Oh my God, you poor girl, because I wanted, because when you were, when you were writing back to me, I was like, oh my god, she doesn't know me. She's thinking, I'm like, crazy. I didn't do my research. I mean, honestly, like you have to, I hope I encourage you to watch our documentary, because I'm very proud of the of the experts that we aggregated, who are truly, you know, just brilliant, genius people that have been doing this for decades, who know that industry, know the business of the industry, that part of it and the things that we're up against, and their only goal is to is for the quality care of our you know, it's, it really is a, it's, it's a, it's a human it's a humanity problem. It's a problem. It's, it's, what we're talking about is humanity, and people have lost that, for the aged and for people that are disabled, there's a lot of there's a lot of stigma, and a lot of, you know, disregard, disregard, because there's a lot of misunderstanding. So

Don Priess: 1:18:14

so do you want everyone to have that opportunity, to have to have the type of care that you give, the type of hospices that your world. We want everyone to have that opportunity, because they don't right now, and I think that's, that's our goal, yeah,

Hospice Nurse Penny: 1:18:32

and we exist and we're not. We're not, you know, like the red herring, there's more of us than than the bad ones. If you have a bad one, and you look for the bad ones, you're going to find all the bad ones. But there are, are many, many more really great hospice agencies. People who go into hospice mostly go into it because they do care about other humans and want to provide compassionate care for them at the end of their life. And it's really disheartening to know that there are not only these agencies that are bad, but the people who work for them. You know, life breaks my heart to know that there's these nurses or social workers that really don't give a damn about the dying people. And it's it's really hard to hear that. I know it exists, but in my experience, and I've been in this for decades too. I haven't met a whole lot of people who weren't really good at what they do in hospice. And all the agencies I've worked for or worked with have been fantastic. So, you know, I think that the most important thing is, again, just people really need to know what their rights are. Make sure that you advocate for yourself if you're not getting the care that you want for your person, and that doesn't just go for hospice. That goes for anywhere, whether your person's in a nursing home or in a hospital or wherever they are, if they're not getting good care, you know advocate you know nobody cares about you or. You're a person more than you do. You're not. You're not. You know you it's just important to be able to stand up for yourself and say, This isn't right. And you know what if, what is it? They say, if it quacks like a duck and walks like a duck, it's a duck. If you have a bad feeling about something that's going on, you're probably right.

Susie Singer Carter: 1:20:19

Yeah. So I agree. I agree. What do we do about the people that don't have advocates? That's the thing that breaks my heart, because so you've got all the and that's why it can go that's why this neglect and this abuse can go on. Because many, many people don't have it, even if they have families, their families don't understand what can go wrong. So they figure they're in a they're in good hands. Like, you know, I used to say on my podcast when I got my mom into this five star facility here in Los Angeles, I can sleep at night now my mom's being well taken care of. Thank you. Thank you so much. I feel like I was so proud of myself for getting her in there, right? And, you know, we don't know. Yeah, we don't know. So what? Any, any, I

Hospice Nurse Penny: 1:21:01

don't have the answer. I don't have the answer for that. You know, I don't know because, again, it's like, I've had patients who had guardian ad litem, they had no one to advocate for them. And I've had fantastic guardian ad litems, which are legal guardians who who did advocate for their person. They cared about the person. And then I've had some that they didn't give a shit about them. They were just collecting a paycheck. You know, I mean, you report them, you report them. That's all you can really do. You know, it's, it's, I don't, I don't know. That's the only answer I have. I don't know what the answer I think, like I said, the healthcare system is broken. It's just broken. It it's, it's everything. It's not just hospice it's not just a nursing homes. It just goes deeper than that. It's just really, really broken, really broken.

Susie Singer Carter: 1:21:48

Hey, listen, thank you for what you're doing out there, like you have such a good following, and that is fantastic, because, you know, listen, nobody wants to talk about death. You want to. You're talking about it. And I as a person who been scared of dying since I'm three years old, my first anxiety attack was like, asking my dad, where do you go when you die? And he was like, you have 97 more years. Get back to bed. And I was like, but I need to know. I need to know. I want to understand. I don't get this heaven thing. I'm not sure. Do we dress up? Do we go to school? What do we do? You know, I didn't. I was very, very disturbed about this whole concept. And, you know, as everyone knows, my mom and I had a pact, we're not dying. That's for other people, right? So it was a joke. And, of course, you know, but you know, I think that that we all do not embrace it. And when I say that my mom taught me how to die, that's, that's no small potatoes. That was a huge, huge thing. And it was. And as one of my other guests told me, who was a doula, said, when you're, when the time comes, you're going to be, you're so strong, you're going to you're going to see what a beautiful experience it can be. And it was, and I was so glad I was there with her. Like I wouldn't trade that for anything, anything. And so what you're doing is to talk about it and normalize it is such a gift. So thank you.

Hospice Nurse Penny: 1:23:10

Thank you for having me on. I really appreciate you inviting me on.

Don Priess: 1:23:15

Thank you. All right. Well, very happy to have you. Yes. I mean, this is, this is a conversation that should keep going. We should keep this alive, because we have so many loved ones, you know, our loved ones, and then ourselves. This is, this is for everybody. Because unless you're in the top 1% everyone's gonna

Susie Singer Carter: 1:23:35

have to, don't you like me, don't do la, la, la, la,

Hospice Nurse Penny: 1:23:38

okay. Everyone's good. No, you can't be an 8% 100% with death, whether it's somebody that we we know or we care about, or ourselves,

Susie Singer Carter: 1:23:47

right, right? Yes, absolutely, and, and, yeah. Well, we're gonna, you know, tie it all up, Don bring it home, absolutely.

Don Priess: 1:23:57

Well, this is in the long run, really, this is really all about love, isn't it? Sue Yes. It is always yes, and that is because love is powerful, love is contagious, and love conquers all's we thank everybody for watching, listening today. If you like what you see, like us, subscribe, do all those fun things, and definitely visit hospice nurse Penny. We'll have all her information up in the show notes and anything else. Susan,

Susie Singer Carter: 1:24:23

no, go on and have a great day, and we'll see. We'll talk to you next time.

Don Priess: 1:24:29

Absolutely Take care everyone. Bye, bye. You.