Penny Smith
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I'm very, very passionate about advocating for hospice and educating on the end of life. It's my area of expertise. I'm literally a subject matter expert by virtue of being a certified hospice nurse. We're dealing with people at what is arguably the worst time in their life, but it's also the most sacred. Death is really unique to the person who's dying.
I'm very, very passionate about advocating for hospice and educating on the end of life. It's my area of expertise. I'm literally a subject matter expert by virtue of being a certified hospice nurse. We're dealing with people at what is arguably the worst time in their life, but it's also the most sacred. Death is really unique to the person who's dying.
I can't remember how many views it got, but over the course of a couple days, all of a sudden, I went from having 100 followers to 10,000 followers. And I was like, oh, okay, I found my niche. I'm very, very passionate about advocating for hospice and educating on the end of life. It's my area of expertise. I'm literally a subject matter expert by virtue of being a certified hospice nurse.
I can't remember how many views it got, but over the course of a couple days, all of a sudden, I went from having 100 followers to 10,000 followers. And I was like, oh, okay, I found my niche. I'm very, very passionate about advocating for hospice and educating on the end of life. It's my area of expertise. I'm literally a subject matter expert by virtue of being a certified hospice nurse.
And people were interested in this at a time when everybody was dying because of COVID and People wanted to know more about this thing that happens to all of us. And I was like, wow, this is my thing. I'm going to do this.
And people were interested in this at a time when everybody was dying because of COVID and People wanted to know more about this thing that happens to all of us. And I was like, wow, this is my thing. I'm going to do this.
Yeah.
Yeah.
Oh, man.
Oh, man.
That was your skeleton.
That was your skeleton.
Okay, you asked me about paranormal experiences. There we go, right there.
Okay, you asked me about paranormal experiences. There we go, right there.
Yeah.
Yeah.
You know, it's funny because last night... They need to go home with you.
You know, it's funny because last night... They need to go home with you.
You asked me last night about paranormal experiences, and I just remembered one. I've actually kind of done funny little skits about it on my social media. When I was working, I normally work days. I don't like working nights at all. But every now and then I would pick up a night shift at the hospice care center.
You asked me last night about paranormal experiences, and I just remembered one. I've actually kind of done funny little skits about it on my social media. When I was working, I normally work days. I don't like working nights at all. But every now and then I would pick up a night shift at the hospice care center.
And we had these pagers that would notify us when a person was calling like a room number or the front door and the front door would be locked at eight o'clock. So it would say front door. So my pager would go off front door. I go to the front door. There's nobody there. So that happened like three times. And I finally bumped into the other regular night shift nurse.
And we had these pagers that would notify us when a person was calling like a room number or the front door and the front door would be locked at eight o'clock. So it would say front door. So my pager would go off front door. I go to the front door. There's nobody there. So that happened like three times. And I finally bumped into the other regular night shift nurse.
And I said, I keep going to the front door because I'm being paged and no one's there. And she just very nonchalantly said, oh, it happens every night. It's just spirits coming to get the patients. And that night we had like three people that died.
And I said, I keep going to the front door because I'm being paged and no one's there. And she just very nonchalantly said, oh, it happens every night. It's just spirits coming to get the patients. And that night we had like three people that died.
Oh, well, my dad coming to me after his death. But I can't really say that I've had any paranormal experiences. I haven't had dreams of my patients that I remember. I might have. When you've taken care of so many people, you forget about these things. Sometimes I'll forget about a patient and then it'll pop into my mind like, oh, that's right. I remember that one.
Oh, well, my dad coming to me after his death. But I can't really say that I've had any paranormal experiences. I haven't had dreams of my patients that I remember. I might have. When you've taken care of so many people, you forget about these things. Sometimes I'll forget about a patient and then it'll pop into my mind like, oh, that's right. I remember that one.
But there is a feeling when a person dies. There's something in the room energetically. There's a shift that you can sense. I don't see it. I don't hear it. I don't feel it. Well, I do feel it. I don't see it or hear it. I just feel it. Like there's just something different in the room.
But there is a feeling when a person dies. There's something in the room energetically. There's a shift that you can sense. I don't see it. I don't hear it. I don't feel it. Well, I do feel it. I don't see it or hear it. I just feel it. Like there's just something different in the room.
But other than that, yeah, I really haven't had a lot of true paranormal experiences related to being a hospice nurse.
But other than that, yeah, I really haven't had a lot of true paranormal experiences related to being a hospice nurse.
Yeah.
Yeah.
Yeah. I mean, I believe it.
Yeah. I mean, I believe it.
No, I didn't before I was a hospice nurse. I had no concept of afterlife, which was very anxiety producing in me. I did have death anxiety because I worried so much about there not being anything afterlife. I never believed in heaven or hell have never been religious. Uh, but becoming a hospice nurse has really helped me to, uh, embrace the possibility of an, the probability of an afterlife.
No, I didn't before I was a hospice nurse. I had no concept of afterlife, which was very anxiety producing in me. I did have death anxiety because I worried so much about there not being anything afterlife. I never believed in heaven or hell have never been religious. Uh, but becoming a hospice nurse has really helped me to, uh, embrace the possibility of an, the probability of an afterlife.
I think it's fear. It's fear because it's unknown. We used to die in our homes with our family back in the old days. And then medical technology advanced to the point where we could keep people alive longer, albeit most of the time they were in the hospital living longer. And then when they died, they were in the hospital. So we weren't really around death as much anymore.
I think it's fear. It's fear because it's unknown. We used to die in our homes with our family back in the old days. And then medical technology advanced to the point where we could keep people alive longer, albeit most of the time they were in the hospital living longer. And then when they died, they were in the hospital. So we weren't really around death as much anymore.
So I guess also I wonder like what qualifies as a paranormal experience because I've seen people who were deathbed visioning and that could be considered paranormal. So when I have somebody who's telling me, my wife is in the corner, I see her, she's right there, she's coming to get me. You know, I'm experiencing that, I guess, paranormal event through the eyes of my patient.
So I guess also I wonder like what qualifies as a paranormal experience because I've seen people who were deathbed visioning and that could be considered paranormal. So when I have somebody who's telling me, my wife is in the corner, I see her, she's right there, she's coming to get me. You know, I'm experiencing that, I guess, paranormal event through the eyes of my patient.
I don't see her, but I sure as heck believe she's there. You know, it's so convincing when you see someone deathbed visioning. You just cannot rule out the possibility that they really are seeing spirits. It's very, very real to them, and it's just very convincing. So I guess in terms of... You could say maybe that's paranormal, I don't know.
I don't see her, but I sure as heck believe she's there. You know, it's so convincing when you see someone deathbed visioning. You just cannot rule out the possibility that they really are seeing spirits. It's very, very real to them, and it's just very convincing. So I guess in terms of... You could say maybe that's paranormal, I don't know.
But I haven't seen any ghosts or spirits myself, other than my dad.
But I haven't seen any ghosts or spirits myself, other than my dad.
Again, it's really hard to put a percentage on it. I've seen it a lot. It's so common that it's in our literature. It's a sign that we consider end-of-life approaching. We developed a tool at my agency to try to determine when people were in their last days of life because Medicare had a quality metric around us making visits to people when they were in their last three days of life.
Again, it's really hard to put a percentage on it. I've seen it a lot. It's so common that it's in our literature. It's a sign that we consider end-of-life approaching. We developed a tool at my agency to try to determine when people were in their last days of life because Medicare had a quality metric around us making visits to people when they were in their last three days of life.
So we developed a tool with evidence-based information as well as anecdotal and mostly anecdotal because we don't do a lot of testing on people that are dying. And one of the things we put on there was that they are visioning their deceased loved ones or pets. So it's common. And People don't always express that to us. They don't always say that they're seeing those people.
So we developed a tool with evidence-based information as well as anecdotal and mostly anecdotal because we don't do a lot of testing on people that are dying. And one of the things we put on there was that they are visioning their deceased loved ones or pets. So it's common. And People don't always express that to us. They don't always say that they're seeing those people.
They don't verbalize it, but I don't think that means that they don't see them. Sometimes they're reticent to talk about it because they're afraid that we're going to think they've lost their marbles or they're dismissed by their family who says, we need medication. They're hallucinating. We don't consider deathbed visions hallucinations at all. These are not hallucinations.
They don't verbalize it, but I don't think that means that they don't see them. Sometimes they're reticent to talk about it because they're afraid that we're going to think they've lost their marbles or they're dismissed by their family who says, we need medication. They're hallucinating. We don't consider deathbed visions hallucinations at all. These are not hallucinations.
So they don't always talk about it. But when people get closer to the end of life, when they're going through this kind of transitioning phase where they're really more dying than they are living, they're kind of turning the corner and heading down that path to where they're going to be actively dying within the next couple of weeks or so. Oftentimes, they're confused and they're not coherent.
So they don't always talk about it. But when people get closer to the end of life, when they're going through this kind of transitioning phase where they're really more dying than they are living, they're kind of turning the corner and heading down that path to where they're going to be actively dying within the next couple of weeks or so. Oftentimes, they're confused and they're not coherent.
They're not able to communicate, but they'll be reaching into the air. And we don't know why they do this. Sometimes we call it reaching for heaven, picking stars. There's also all different terms for it.
They're not able to communicate, but they'll be reaching into the air. And we don't know why they do this. Sometimes we call it reaching for heaven, picking stars. There's also all different terms for it.
But I've come to believe after witnessing so many people deathbed visioning that they are reaching for those visions that they see because so often they are in the corner of the room, they're up in the air. And so I really think that's what's going on.
But I've come to believe after witnessing so many people deathbed visioning that they are reaching for those visions that they see because so often they are in the corner of the room, they're up in the air. And so I really think that's what's going on.
Yes.
Yes.
It's usually a person or an animal. It's a person that they know.
It's usually a person or an animal. It's a person that they know.
They don't really describe the form. And we don't press them for answers either. It's kind of like it's their experience. And so we don't... ask a whole lot of questions. I did ask one patient who told me that his wife was in the corner. Well, I was working at the nurse's station and his room was next to the nurse's station and he was yelling. And I knew that his wife had died a year before him.
They don't really describe the form. And we don't press them for answers either. It's kind of like it's their experience. And so we don't... ask a whole lot of questions. I did ask one patient who told me that his wife was in the corner. Well, I was working at the nurse's station and his room was next to the nurse's station and he was yelling. And I knew that his wife had died a year before him.
And it became more unknown to us. You know, we also have a medical community that is taught how to cure people, how to make people live. So when they die, death is seen as a failure. So there's, you know, many different aspects to why we're kind of afraid of death. But what I've learned being a hospice nurse and watching, you know, thousands of people dying and
And it became more unknown to us. You know, we also have a medical community that is taught how to cure people, how to make people live. So when they die, death is seen as a failure. So there's, you know, many different aspects to why we're kind of afraid of death. But what I've learned being a hospice nurse and watching, you know, thousands of people dying and
And I went into the room and he was looking up at the corner of the room and he was reaching out and he was crying. He had tears just pouring down his face and he was yelling, Ingrid, Ingrid. And I did ask him, was Ingrid your wife? And he said, yes, yes, she's right there. I see her. And I said, is she coming to get you?
And I went into the room and he was looking up at the corner of the room and he was reaching out and he was crying. He had tears just pouring down his face and he was yelling, Ingrid, Ingrid. And I did ask him, was Ingrid your wife? And he said, yes, yes, she's right there. I see her. And I said, is she coming to get you?
And he said, yes, yes, but not today, tomorrow, which I thought was pretty specific. He didn't die the next day. He died a couple of days after that. And the caregiver that knew his wife said that she was always late, was always like her to be late. So we might ask some questions, but we don't ask them, what are they wearing? It's almost like even though you see it so many times, it's still so...
And he said, yes, yes, but not today, tomorrow, which I thought was pretty specific. He didn't die the next day. He died a couple of days after that. And the caregiver that knew his wife said that she was always late, was always like her to be late. So we might ask some questions, but we don't ask them, what are they wearing? It's almost like even though you see it so many times, it's still so...
Not unsettling, shocking, just like profound. You just want to experience the moment through their eyes and not really dive into what do they look like? What are they wearing? It's, it's, yeah. Yeah.
Not unsettling, shocking, just like profound. You just want to experience the moment through their eyes and not really dive into what do they look like? What are they wearing? It's, it's, yeah. Yeah.
I did have a lady help me looking for a cat one time though, at the care center. And I looked for quite a while before she said, Oh my gosh, I just realized that's a cat that I had when I was a kid and she's dead.
I did have a lady help me looking for a cat one time though, at the care center. And I looked for quite a while before she said, Oh my gosh, I just realized that's a cat that I had when I was a kid and she's dead.
Yeah. So they do see pets too.
Yeah. So they do see pets too.
Yes. Yeah. Transitioning.
Yes. Yeah. Transitioning.
We don't really have a name for before the transitioning period. Some people will say it's pre-transitioning. But we're all dying. That's what getting old is. When somebody comes on hospice, they're expected to die within six months or less. Sometimes they live longer than that. But...
We don't really have a name for before the transitioning period. Some people will say it's pre-transitioning. But we're all dying. That's what getting old is. When somebody comes on hospice, they're expected to die within six months or less. Sometimes they live longer than that. But...
And that period of time before they get into transition is kind of not eating, withdrawing socially is really common, sleeping a lot. But as they move into transition, which is in the weeks before their death, It could be weeks to days because everybody has a different kind of trajectory towards the end of their life.
And that period of time before they get into transition is kind of not eating, withdrawing socially is really common, sleeping a lot. But as they move into transition, which is in the weeks before their death, It could be weeks to days because everybody has a different kind of trajectory towards the end of their life.
Sometimes they go through the stages super fast and sometimes they linger longer, but usually transitioning is weeks, no more than two or three weeks. And that's when we start seeing the deathbed visioning, travel language where people will say, I need to go home. I need to get out of here. I need to pack.
Sometimes they go through the stages super fast and sometimes they linger longer, but usually transitioning is weeks, no more than two or three weeks. And that's when we start seeing the deathbed visioning, travel language where people will say, I need to go home. I need to get out of here. I need to pack.
A lot of times during transition, people are confused and it almost seems like they're here and then they're somewhere else. Like when they're here, they aren't always aware of exactly where they are. And some people will say that's like when the veil is getting thin, which I love that because it makes sense to me. So then they're saying, I need to go home. I need to get out of here.
A lot of times during transition, people are confused and it almost seems like they're here and then they're somewhere else. Like when they're here, they aren't always aware of exactly where they are. And some people will say that's like when the veil is getting thin, which I love that because it makes sense to me. So then they're saying, I need to go home. I need to get out of here.
how they interact with their families and how you can have a good death experience or a bad death experience is that the best way to have the good death experience is to be able to talk about it, to acknowledge it, to know what's happening. People are afraid when they see somebody going through the dying process.
how they interact with their families and how you can have a good death experience or a bad death experience is that the best way to have the good death experience is to be able to talk about it, to acknowledge it, to know what's happening. People are afraid when they see somebody going through the dying process.
So I've had many patients where I would go to see them and the spouse would say, we argued all night because he kept saying, I need to go home. And I kept telling him, you're in the same house we've been living in for 30 years. Home means something different to them at this point. It can be confusing if they're in the hospital when people do this and say, I want to go home.
So I've had many patients where I would go to see them and the spouse would say, we argued all night because he kept saying, I need to go home. And I kept telling him, you're in the same house we've been living in for 30 years. Home means something different to them at this point. It can be confusing if they're in the hospital when people do this and say, I want to go home.
And people think, oh, they just want to get out of the hospital and then they die. And it's like, no, they mean something different when they say, I want to go home. They're getting ready to die. Some people will say, I'm dying. I'm going to die soon. And of course, the family's response to that is, no, you're not. You're going to get better. But they know. They know that they're dying.
And people think, oh, they just want to get out of the hospital and then they die. And it's like, no, they mean something different when they say, I want to go home. They're getting ready to die. Some people will say, I'm dying. I'm going to die soon. And of course, the family's response to that is, no, you're not. You're going to get better. But they know. They know that they're dying.
So, yeah, we see some really profound things during transition. We see the reaching into there. We see people like to do things with their hands. Smokers will be like doing this. People tying flies have had many fishermen who were doing this with their hands. And the family would say, oh, he used to tie flies. He's a fisherman. But they're not really communicating that to us.
So, yeah, we see some really profound things during transition. We see the reaching into there. We see people like to do things with their hands. Smokers will be like doing this. People tying flies have had many fishermen who were doing this with their hands. And the family would say, oh, he used to tie flies. He's a fisherman. But they're not really communicating that to us.
They're kind of, like I said, in and out of it. And the other thing that's really amazing that can happen during transition is that a person can have an end of life rally where all of a sudden they just wake up with a burst of energy. They're very lucid. They want to eat a meal when they haven't been eating for days or even weeks. They want you to call all their friends.
They're kind of, like I said, in and out of it. And the other thing that's really amazing that can happen during transition is that a person can have an end of life rally where all of a sudden they just wake up with a burst of energy. They're very lucid. They want to eat a meal when they haven't been eating for days or even weeks. They want you to call all their friends.
Somebody told me once that they had their person on hospice had a rally where they wanted to play bridge. She woke up all of a sudden and said, can you just call my friends? I want to play some bridge. And it doesn't usually last very long. It usually lasts about a day or less. And then they go back into this either transition or actively dying phase where they are close to the end of their lives.
Somebody told me once that they had their person on hospice had a rally where they wanted to play bridge. She woke up all of a sudden and said, can you just call my friends? I want to play some bridge. And it doesn't usually last very long. It usually lasts about a day or less. And then they go back into this either transition or actively dying phase where they are close to the end of their lives.
So people think when their person goes through a rally, they think they're getting better. But in reality, we have to manage their expectations because they're close to death when this happens.
So people think when their person goes through a rally, they think they're getting better. But in reality, we have to manage their expectations because they're close to death when this happens.
Well, I think, yeah, I think they're talking about death, whatever that means to that person. If they believe that it's heaven, then that's what they're probably referring to. But I think just generally speaking, they're talking about leaving earth. They're talking about dying.
Well, I think, yeah, I think they're talking about death, whatever that means to that person. If they believe that it's heaven, then that's what they're probably referring to. But I think just generally speaking, they're talking about leaving earth. They're talking about dying.
They're lucid. Yeah.
They're lucid. Yeah.
Yeah.
Yeah.
Okay. Recognizing people.
Okay. Recognizing people.
I was telling you about a patient that I had who grew up in Germany, but did not speak German for the whole rest of her life. And then at the end, she had some lucidity where she was able to speak German again. So yeah, it's usually recognizing people.
I was telling you about a patient that I had who grew up in Germany, but did not speak German for the whole rest of her life. And then at the end, she had some lucidity where she was able to speak German again. So yeah, it's usually recognizing people.
They've never seen it depicted on television or movies unless it's a violent death experience. You know, they're great at making violent death look realistic, but not so much a natural death, which is how most people are going to die. So when they see their person going through these changes, their body going through these changes, it's scary to them.
They've never seen it depicted on television or movies unless it's a violent death experience. You know, they're great at making violent death look realistic, but not so much a natural death, which is how most people are going to die. So when they see their person going through these changes, their body going through these changes, it's scary to them.
And I hear this all the time from people who follow me too, who will say, you know, that's a beauty of social media is that whenever I do a video talking about this, people get in my comment section and they validate each other with their experiences. And many, many people will say, yes, my grandmother who had Alzheimer's recognized me and told stories about when I was a kid.
And I hear this all the time from people who follow me too, who will say, you know, that's a beauty of social media is that whenever I do a video talking about this, people get in my comment section and they validate each other with their experiences. And many, many people will say, yes, my grandmother who had Alzheimer's recognized me and told stories about when I was a kid.
And, you know, it's, it's amazing that this happens. And we don't know why, and it's fairly common. There are statistics on that. It's about four out of 10 dying people will have an end of life rally. And there's theories as to why it happens, but we don't test, we don't do tests on people who are dying. We're not gonna draw blood on somebody who's on hospice.
And, you know, it's, it's amazing that this happens. And we don't know why, and it's fairly common. There are statistics on that. It's about four out of 10 dying people will have an end of life rally. And there's theories as to why it happens, but we don't test, we don't do tests on people who are dying. We're not gonna draw blood on somebody who's on hospice.
So we don't have tests, but some doctors have surmised that it might be that as their organs are shutting down, they're releasing hormones.
So we don't have tests, but some doctors have surmised that it might be that as their organs are shutting down, they're releasing hormones.
which makes sense because steroids are hormones and steroids can give people a burst of energy so it makes sense that that could be what it is but i also like the idea of not really knowing because i just think there's something magical about the dying process that makes it more tolerable for us to be able to believe that there's something after we die makes it more acceptable and tolerable.
which makes sense because steroids are hormones and steroids can give people a burst of energy so it makes sense that that could be what it is but i also like the idea of not really knowing because i just think there's something magical about the dying process that makes it more tolerable for us to be able to believe that there's something after we die makes it more acceptable and tolerable.
And so these things that are just unable to be explained, I think are best left that way.
And so these things that are just unable to be explained, I think are best left that way.
Deathbed visions. Yeah, okay. Absolutely. When I went through nursing school, I learned in chemistry that nothing ever really goes away. It just changes its form, and a lot of times that's into the form of energy. And I believe that... Our spirits live on in the form of energy. So I was a hospice nurse for five years before my dad died.
Deathbed visions. Yeah, okay. Absolutely. When I went through nursing school, I learned in chemistry that nothing ever really goes away. It just changes its form, and a lot of times that's into the form of energy. And I believe that... Our spirits live on in the form of energy. So I was a hospice nurse for five years before my dad died.
But already by the time he died, I had formed this belief that there's life after death because of seeing people deathbed visioning. And then when my dad came to me in the form of energy, that was just like, yep. It just firmly convinced me 100%. That's my belief, you know?
But already by the time he died, I had formed this belief that there's life after death because of seeing people deathbed visioning. And then when my dad came to me in the form of energy, that was just like, yep. It just firmly convinced me 100%. That's my belief, you know?
It's based on experience, yeah.
It's based on experience, yeah.
They're just beliefs. Right, exactly. But, you know, and I always say I'm not trying to convert... anybody to believe what I believe or to convince them that there's life after death. You can believe what you want. It either is or it isn't. If it isn't, then we won't know because we'll be dead, which my ex-husband used to say to me all the time.
They're just beliefs. Right, exactly. But, you know, and I always say I'm not trying to convert... anybody to believe what I believe or to convince them that there's life after death. You can believe what you want. It either is or it isn't. If it isn't, then we won't know because we'll be dead, which my ex-husband used to say to me all the time.
It did not help my death anxiety, by the way, when he said that. But, you know, I just feel like I do believe that there's something after this. If I'm wrong, it won't matter.
It did not help my death anxiety, by the way, when he said that. But, you know, I just feel like I do believe that there's something after this. If I'm wrong, it won't matter.
But as a hospice nurse, when I tell them that's normal, their relief is palpable. It's like, it is? Yeah, that's normal. We see that all the time.
But as a hospice nurse, when I tell them that's normal, their relief is palpable. It's like, it is? Yeah, that's normal. We see that all the time.
They usually die within about a week.
They usually die within about a week.
And people can go longer than that. Death is really unique to the person who's dying. So sometimes something can be different. But on the average, it's usually they're going to die within about a week. And it almost always lasts less than a day. It's really like a very short window of time.
And people can go longer than that. Death is really unique to the person who's dying. So sometimes something can be different. But on the average, it's usually they're going to die within about a week. And it almost always lasts less than a day. It's really like a very short window of time.
I don't know. I mean, because I don't know what causes it. So I don't know. If it is like a flood of hormones, you know, maybe it just... excretes out of the body and then it's done. You know, I, I really don't know.
I don't know. I mean, because I don't know what causes it. So I don't know. If it is like a flood of hormones, you know, maybe it just... excretes out of the body and then it's done. You know, I, I really don't know.
I grew up all over the place. So I was born on Guam. My dad was in the Navy. My mom was Canadian. They met in Washington and Whidbey Island and got married three months after they met. And so I was born on Guam. And I always say I'm an island girl. I was born on Guam, raised on Whidbey Island, but also lived in...
I grew up all over the place. So I was born on Guam. My dad was in the Navy. My mom was Canadian. They met in Washington and Whidbey Island and got married three months after they met. And so I was born on Guam. And I always say I'm an island girl. I was born on Guam, raised on Whidbey Island, but also lived in...
In California, because of the military, I lived in Oregon, I lived in Florida, Connecticut, Okinawa, Japan, but mostly Washington, western Washington, and most recently have been living in eastern Washington. So did not really... embrace college after high school. I thought I was going to be a rock and roll singer, so I didn't need to go to college.
In California, because of the military, I lived in Oregon, I lived in Florida, Connecticut, Okinawa, Japan, but mostly Washington, western Washington, and most recently have been living in eastern Washington. So did not really... embrace college after high school. I thought I was going to be a rock and roll singer, so I didn't need to go to college.
Got pregnant when I was 20, got married to a sailor, so traveled some more, and kind of was a hot mess for a long time. Didn't really get my life together until I was 40. Well, 30, I would say. 27, went through treatment, but prior to that had been a drug addict, gave my son to his dad to raise so I could party. I was a bartender.
Got pregnant when I was 20, got married to a sailor, so traveled some more, and kind of was a hot mess for a long time. Didn't really get my life together until I was 40. Well, 30, I would say. 27, went through treatment, but prior to that had been a drug addict, gave my son to his dad to raise so I could party. I was a bartender.
I lived in the bars, really aimless, aimless and kind of useless and worthless, but did finally go through treatment when I was 27, turned my life around. remarried a military man again, had a couple of daughters, got my son back. And then 10 years into that marriage started, um, realizing that we just weren't right for each other and decided to get divorced.
I lived in the bars, really aimless, aimless and kind of useless and worthless, but did finally go through treatment when I was 27, turned my life around. remarried a military man again, had a couple of daughters, got my son back. And then 10 years into that marriage started, um, realizing that we just weren't right for each other and decided to get divorced.
Oh. hundreds, maybe into a thousand. I worked in a hospice care, two different hospice care centers for seven years. That was the first part of my hospice career. So at the bedside, in your face, death and dying. Hospice care centers are mostly for people on hospice who have acute symptom management needs that cannot be treated at home. They need to have skilled nursing 24-7.
Oh. hundreds, maybe into a thousand. I worked in a hospice care, two different hospice care centers for seven years. That was the first part of my hospice career. So at the bedside, in your face, death and dying. Hospice care centers are mostly for people on hospice who have acute symptom management needs that cannot be treated at home. They need to have skilled nursing 24-7.
And because I had been a stay-at-home mom with the kids homeschooling, I needed a career. We knew that, you know, this day and age, you can't really survive on alimony and child support. And so I decided to go to nursing school.
And because I had been a stay-at-home mom with the kids homeschooling, I needed a career. We knew that, you know, this day and age, you can't really survive on alimony and child support. And so I decided to go to nursing school.
And I really was at a time in my life where I just wanted to make up for all the things that I had done when I was younger and kind of be more productive in society and give back to the universe. And so when trying to decide what kind of a nurse I wanted to be, I thought about my former stepmother-in-law who had died a year before I went to nursing school. She was on hospice.
And I really was at a time in my life where I just wanted to make up for all the things that I had done when I was younger and kind of be more productive in society and give back to the universe. And so when trying to decide what kind of a nurse I wanted to be, I thought about my former stepmother-in-law who had died a year before I went to nursing school. She was on hospice.
I felt like the nurses were just very gifted in what they did. The work was sacred. It felt like really special work to me. So I knew that's what I was going to want to do. I also had severe death anxiety.
I felt like the nurses were just very gifted in what they did. The work was sacred. It felt like really special work to me. So I knew that's what I was going to want to do. I also had severe death anxiety.
Yeah. Like I said, my husband would say, well, if there's nothing after we die and you'll have to worry because you'll be dead. And, um, So I always say jokingly, that's what led to our divorce. But so I kind of had a morbid curiosity, a fascination with death. And then I thought maybe this will be like, was it immersion therapy when you expose yourself to something? Maybe that'll help.
Yeah. Like I said, my husband would say, well, if there's nothing after we die and you'll have to worry because you'll be dead. And, um, So I always say jokingly, that's what led to our divorce. But so I kind of had a morbid curiosity, a fascination with death. And then I thought maybe this will be like, was it immersion therapy when you expose yourself to something? Maybe that'll help.
I was right, by the way. Uh, so I, um, I became a licensed practical nurse first and I did not think I could work as a hospice nurse being a licensed practical nurse. So I went to work in a clinic and then I was there for a year, then went to work in a hospital for a couple months, got laid off. They lay off LPNs frequently.
I was right, by the way. Uh, so I, um, I became a licensed practical nurse first and I did not think I could work as a hospice nurse being a licensed practical nurse. So I went to work in a clinic and then I was there for a year, then went to work in a hospital for a couple months, got laid off. They lay off LPNs frequently.
And during that time had met somebody new and there was a hospice care center in his neighborhood. And I thought, well, you know what? I should just go see if they're hiring LPNs. And they were. And so I was hired. And then I loved it so much, I stayed with it. And through the years, I got my RN, my BSN, and my certification in hospice and palliative care nursing.
And during that time had met somebody new and there was a hospice care center in his neighborhood. And I thought, well, you know what? I should just go see if they're hiring LPNs. And they were. And so I was hired. And then I loved it so much, I stayed with it. And through the years, I got my RN, my BSN, and my certification in hospice and palliative care nursing.
And I've pretty much been in it ever since. So that's like my whole life story condensed down for you.
And I've pretty much been in it ever since. So that's like my whole life story condensed down for you.
Still, it's probably too long.
Still, it's probably too long.
Almost five. It'll be five years in October.
Almost five. It'll be five years in October.
That's awesome. Yeah, congratulations to you. Yeah, thank you. Yeah, I had like a 30-year relapse. Okay. You know, they say alcoholism is progressive, and it is. And definitely, I managed it for a long time. And then came to a point where it was no longer manageable. And I tried everything. There's lots of things that you can try to do to quit drinking.
That's awesome. Yeah, congratulations to you. Yeah, thank you. Yeah, I had like a 30-year relapse. Okay. You know, they say alcoholism is progressive, and it is. And definitely, I managed it for a long time. And then came to a point where it was no longer manageable. And I tried everything. There's lots of things that you can try to do to quit drinking.
But in the end, the only thing that works is to stop picking it up and putting it in your mouth.
But in the end, the only thing that works is to stop picking it up and putting it in your mouth.
And although the plan is to bring them in on this higher level of care, get them on the medications they need to be on, stabilize them and send them back home. Most people, when they have a pain crisis or terminal agitation, something that lands them in the care center are close to the end of life. Those things happen close to the end of life. So they usually would die in the care center.
And although the plan is to bring them in on this higher level of care, get them on the medications they need to be on, stabilize them and send them back home. Most people, when they have a pain crisis or terminal agitation, something that lands them in the care center are close to the end of life. Those things happen close to the end of life. So they usually would die in the care center.
My favorite saying. It's great. It's my signature line in my email. It's so true. Yeah. It's Jean-Pierre Tillard, I think, that said that. Yeah. Yeah. I love it. I mean, yeah, that resonates with me so much.
My favorite saying. It's great. It's my signature line in my email. It's so true. Yeah. It's Jean-Pierre Tillard, I think, that said that. Yeah. Yeah. I love it. I mean, yeah, that resonates with me so much.
I really believe that. Right. Yeah. Yeah.
I really believe that. Right. Yeah. Yeah.
There is a feeling when a person dies, something in the room, energetically. There's a shift that you can sense. I don't see it or hear it, I just feel it, like there's just something different in the room. Their good outcome is for that person to live. Our good outcome is for the person to die comfortably. Hospice doesn't add more days to your life, it adds more life to your days.
There is a feeling when a person dies, something in the room, energetically. There's a shift that you can sense. I don't see it or hear it, I just feel it, like there's just something different in the room. Their good outcome is for that person to live. Our good outcome is for the person to die comfortably. Hospice doesn't add more days to your life, it adds more life to your days.
Well, normalizing. And we don't, I don't, it's not my job to tell people what I think happens, but I do validate their experiences. If they see that their person is talking about seeing their deceased loved ones, then I validate that. Yeah, we see that all the time. It's really normal. It brings comfort to them, and we don't want to medicate that away.
Well, normalizing. And we don't, I don't, it's not my job to tell people what I think happens, but I do validate their experiences. If they see that their person is talking about seeing their deceased loved ones, then I validate that. Yeah, we see that all the time. It's really normal. It brings comfort to them, and we don't want to medicate that away.
So it's really more explaining things that are normal and validating what they're seeing. I would never say, yeah, he's seeing spirits of his deceased loved one, because I don't know if that's what they believe. And that would be... Kind of the same as proselytizing, which we also don't do. We don't try to convert people at the end of their life.
So it's really more explaining things that are normal and validating what they're seeing. I would never say, yeah, he's seeing spirits of his deceased loved one, because I don't know if that's what they believe. And that would be... Kind of the same as proselytizing, which we also don't do. We don't try to convert people at the end of their life.
If they want to go into, well, what do you think is happening? Do you believe there's spirits? I would say, it sounds like spirituality is really important to you. I would love to have the spiritual care counselor come and see you and talk with you more about this. Because we do have the spiritual care counselors, also known as chaplains, who are trained in that.
If they want to go into, well, what do you think is happening? Do you believe there's spirits? I would say, it sounds like spirituality is really important to you. I would love to have the spiritual care counselor come and see you and talk with you more about this. Because we do have the spiritual care counselors, also known as chaplains, who are trained in that.
They have a master's degree in divinity. That's what they know. That's their knowledge base. And they're coming at it from a learned experience through education, not just their own belief. They understand all the different beliefs that are out there. So it's not for me to try to dive into those conversations with people as much.
They have a master's degree in divinity. That's what they know. That's their knowledge base. And they're coming at it from a learned experience through education, not just their own belief. They understand all the different beliefs that are out there. So it's not for me to try to dive into those conversations with people as much.
Yeah. Again, it's my job to be protective of the patient and to advocate for them. And would ask that they have the chaplain come and talk with them. It sounds like religion is really important to you. He's expressed that it's not as important to him. I think it would be great if we could get the chaplain out here to have a conversation.
Yeah. Again, it's my job to be protective of the patient and to advocate for them. And would ask that they have the chaplain come and talk with them. It sounds like religion is really important to you. He's expressed that it's not as important to him. I think it would be great if we could get the chaplain out here to have a conversation.
Not so much over that. I mean, there's been conflict. I've been fired. If you're a hospice nurse for any length of time, you will have been fired by at least one family who just doesn't get along with you. I'm very straightforward and most people really appreciate that, but there's some that don't want it. They don't want to hear it. They don't want to talk about it.
Not so much over that. I mean, there's been conflict. I've been fired. If you're a hospice nurse for any length of time, you will have been fired by at least one family who just doesn't get along with you. I'm very straightforward and most people really appreciate that, but there's some that don't want it. They don't want to hear it. They don't want to talk about it.
So I might see five or six people die in a couple of days. I could be off on the weekend and come back to our 20 bed facility and we have a whole new round of patients. Everybody died over the weekend. So it's hard for me to estimate exactly how many I've witnessed their last breath, but it's, it's been in the hundreds for sure.
So I might see five or six people die in a couple of days. I could be off on the weekend and come back to our 20 bed facility and we have a whole new round of patients. Everybody died over the weekend. So it's hard for me to estimate exactly how many I've witnessed their last breath, but it's, it's been in the hundreds for sure.
Uh, so yeah, no, I really haven't had, I think I'm offering them an alternative suggestion. Like how about instead of this, we get somebody in here that can talk with you more about this. Um, and that's what my role is as the nurse is to make sure that I'm the case manager. I'm the one who's managing the care of that person. So I need to identify who on the team because hospice care is a team.
Uh, so yeah, no, I really haven't had, I think I'm offering them an alternative suggestion. Like how about instead of this, we get somebody in here that can talk with you more about this. Um, and that's what my role is as the nurse is to make sure that I'm the case manager. I'm the one who's managing the care of that person. So I need to identify who on the team because hospice care is a team.
It's not just the nurse. We get all the credit, but, But it's an interdisciplinary team. It's really one of the few areas of health care where there is an interdisciplinary team. There's an aide, there's a chaplain, there's a social worker, there's a doctor, a nurse practitioner, volunteers. The family is part of the team. The patient is part of the team.
It's not just the nurse. We get all the credit, but, But it's an interdisciplinary team. It's really one of the few areas of health care where there is an interdisciplinary team. There's an aide, there's a chaplain, there's a social worker, there's a doctor, a nurse practitioner, volunteers. The family is part of the team. The patient is part of the team.
So I am to manage the care of the patient by bringing in the appropriate team members.
So I am to manage the care of the patient by bringing in the appropriate team members.
For addressing the person's spiritual needs. And a lot of times people will just out of hand refuse the chaplain. And I really try to get them to not do that. And I can come from a place of experience with that because having not been religious before, Before I became a hospice nurse, I was going in for major surgery, and the chaplain came to speak with me. It was a military hospital.
For addressing the person's spiritual needs. And a lot of times people will just out of hand refuse the chaplain. And I really try to get them to not do that. And I can come from a place of experience with that because having not been religious before, Before I became a hospice nurse, I was going in for major surgery, and the chaplain came to speak with me. It was a military hospital.
He was a priest, so he had a military outfit on with a priest collar, and I thought he was coming to minister to me because he thought I was going to die, and it freaked me out. I was like, I don't want somebody like trying to convert me, you know, and that's not what they do.
He was a priest, so he had a military outfit on with a priest collar, and I thought he was coming to minister to me because he thought I was going to die, and it freaked me out. I was like, I don't want somebody like trying to convert me, you know, and that's not what they do.
And so that's what's really important to me when I'm talking with families is to educate them that the chaplain is not going to try to convert you. We have atheist chaplains in hospice. We have Jewish chaplains. We have Catholic chaplains. We have, you know, every denomination that there is, Buddhist, Muslim, they're all
And so that's what's really important to me when I'm talking with families is to educate them that the chaplain is not going to try to convert you. We have atheist chaplains in hospice. We have Jewish chaplains. We have Catholic chaplains. We have, you know, every denomination that there is, Buddhist, Muslim, they're all
And they're experts in not only their area of religion that they practice, but all areas of religion and spirituality. So they will help the patient with whatever their identified, self-identified, not what the family identifies, but their self-identified religious or spiritual needs are.
And they're experts in not only their area of religion that they practice, but all areas of religion and spirituality. So they will help the patient with whatever their identified, self-identified, not what the family identifies, but their self-identified religious or spiritual needs are.
But religion is rooted in spirituality.
But religion is rooted in spirituality.
And like I said, there are atheist chaplains. So it's not just because some of them are religious, but religion and spirituality are connected to each other.
And like I said, there are atheist chaplains. So it's not just because some of them are religious, but religion and spirituality are connected to each other.
Yeah, absolutely. Yeah, any chaplain who is proselytizing shouldn't be a chaplain because that's not their job to do that. Right, right. They're knowledgeable in all religion. Like I said, they have a master's degree in divinity. They are knowledgeable in religion, but also as a part of their training, they should know that it's not their job to be pushing their belief onto their patient.
Yeah, absolutely. Yeah, any chaplain who is proselytizing shouldn't be a chaplain because that's not their job to do that. Right, right. They're knowledgeable in all religion. Like I said, they have a master's degree in divinity. They are knowledgeable in religion, but also as a part of their training, they should know that it's not their job to be pushing their belief onto their patient.
If they are, they're unethical and they shouldn't be a chaplain.
If they are, they're unethical and they shouldn't be a chaplain.
I always start from a place of wanting to find out where they're at with understanding what's going on. And from there going to what do you want to know? And then meeting them where they're at. And sometimes they don't want to know. They don't want to talk about it. So the don'ts are don't go places with them if they're not ready for that.
I always start from a place of wanting to find out where they're at with understanding what's going on. And from there going to what do you want to know? And then meeting them where they're at. And sometimes they don't want to know. They don't want to talk about it. So the don'ts are don't go places with them if they're not ready for that.
20 years. 20 years. Yeah. Yeah. And I did patient care for the majority of that time. I also have worked in education, regulatory and quality. I've always been kind of person that wants to learn as much as I can about whatever I'm doing, whether that's being a bartender, you know, or a ice skating attendant or a hospice nurse. And I was ready to leave the bedside, not because of the work itself.
20 years. 20 years. Yeah. Yeah. And I did patient care for the majority of that time. I also have worked in education, regulatory and quality. I've always been kind of person that wants to learn as much as I can about whatever I'm doing, whether that's being a bartender, you know, or a ice skating attendant or a hospice nurse. And I was ready to leave the bedside, not because of the work itself.
You have to allow them to determine what they're comfortable with talking about. But definitely, what do you understand about this? Because I've had patients who came on to hospice who didn't know that they were dying. I had a patient in the care center who was 28 years old with colon cancer. And she came in because she had severe constipation. And so she came in and we got her...
You have to allow them to determine what they're comfortable with talking about. But definitely, what do you understand about this? Because I've had patients who came on to hospice who didn't know that they were dying. I had a patient in the care center who was 28 years old with colon cancer. And she came in because she had severe constipation. And so she came in and we got her...
constipation taken care of. And I was packaging all her medications up for her to go home. And she came out to the nurse's station and I said, oh, I'm just getting your meds ready for you to go home today. And I thought she'd be like thrilled she's going home. And she looked at the medications and she said, those are all for me? And I said, yeah.
constipation taken care of. And I was packaging all her medications up for her to go home. And she came out to the nurse's station and I said, oh, I'm just getting your meds ready for you to go home today. And I thought she'd be like thrilled she's going home. And she looked at the medications and she said, those are all for me? And I said, yeah.
And she said, I wasn't on anything before I came here. Why do I have to be on all these meds? And I said, well, the doctor thinks that you have weeks to months left and we want to make sure that your bowels are managed and you don't end up back here again. And she freaked out. Weeks to months? The doctor said I had a year.
And she said, I wasn't on anything before I came here. Why do I have to be on all these meds? And I said, well, the doctor thinks that you have weeks to months left and we want to make sure that your bowels are managed and you don't end up back here again. And she freaked out. Weeks to months? The doctor said I had a year.
So her oncologist told her that she had a year left and then referred her to hospice knowing that the qualification is a life expectancy of six months or less. So that was a lesson for me is know what your patient knows before you go in there with a prognosis. So really finding out what do you understand?
So her oncologist told her that she had a year left and then referred her to hospice knowing that the qualification is a life expectancy of six months or less. So that was a lesson for me is know what your patient knows before you go in there with a prognosis. So really finding out what do you understand?
I've had lots of patients that came to hospice and their doctor told them that hospice could give them more help. They don't understand that this is end of life care. And I explained that to them.
I've had lots of patients that came to hospice and their doctor told them that hospice could give them more help. They don't understand that this is end of life care. And I explained that to them.
Oh, yeah, yeah. I had one patient, very old. He was in his 90s. I think he was like 92. And he had a heart condition, fell and broke his hip and was not a surgical candidate. So they put him on hospice and sent him to us.
Oh, yeah, yeah. I had one patient, very old. He was in his 90s. I think he was like 92. And he had a heart condition, fell and broke his hip and was not a surgical candidate. So they put him on hospice and sent him to us.
at the care center and he was furious he was livid and his wife was too i remember taking her into another room to talk she didn't want to talk about it in front of him i respect that took her into another room and she she was so angry that the doctors wouldn't do surgery because he was too high risk And I said, surgeons, it's their job to do surgery.
at the care center and he was furious he was livid and his wife was too i remember taking her into another room to talk she didn't want to talk about it in front of him i respect that took her into another room and she she was so angry that the doctors wouldn't do surgery because he was too high risk And I said, surgeons, it's their job to do surgery.
So if they're saying they don't want to do it, there really is a risk to it. And they really feel like, you know, he's end of life. And she signed him out and took him home.
So if they're saying they don't want to do it, there really is a risk to it. And they really feel like, you know, he's end of life. And she signed him out and took him home.
I am compassionately, you know, I will say, well, hospice means that, you know, he has, or, or you have whoever I'm speaking to the family or the patient, a life expectancy of six months or less. And of course we don't know for sure. It could be longer, could be shorter, but that is what the doctor is estimating as far as how much time you have left.
I am compassionately, you know, I will say, well, hospice means that, you know, he has, or, or you have whoever I'm speaking to the family or the patient, a life expectancy of six months or less. And of course we don't know for sure. It could be longer, could be shorter, but that is what the doctor is estimating as far as how much time you have left.
And we focus on you living your best life for as long as you have your life. So we're not going to do anything to try to cure your condition, but we are going to make sure that you are as comfortable as you can be while you're still here. I love the saying that hospice doesn't add more days to your life. It adds more life to your days.
And we focus on you living your best life for as long as you have your life. So we're not going to do anything to try to cure your condition, but we are going to make sure that you are as comfortable as you can be while you're still here. I love the saying that hospice doesn't add more days to your life. It adds more life to your days.
The families more usually than the patients because, well, for one thing, patients always come on to hospice way too late. The length of stay is much shorter than we would like for it to be. Most people die in less than six months.
The families more usually than the patients because, well, for one thing, patients always come on to hospice way too late. The length of stay is much shorter than we would like for it to be. Most people die in less than six months.
I love working with dying people in their families. There are challenges for sure. Especially when you're a home hospice nurse and you're going into people's houses. I say being a home hospice nurse is like a box of chocolate going into someone's house. You never know what you're going to get. So it's challenging, but I loved it.
I love working with dying people in their families. There are challenges for sure. Especially when you're a home hospice nurse and you're going into people's houses. I say being a home hospice nurse is like a box of chocolate going into someone's house. You never know what you're going to get. So it's challenging, but I loved it.
And we do have those that stay longer on hospice, usually dementia patients who we don't get to know as well because they are profoundly demented by the time they qualify for hospice. So We interact with the families a lot, especially when the patient becomes unresponsive or they're in that transitioning period where we're not able to communicate with them as much.
And we do have those that stay longer on hospice, usually dementia patients who we don't get to know as well because they are profoundly demented by the time they qualify for hospice. So We interact with the families a lot, especially when the patient becomes unresponsive or they're in that transitioning period where we're not able to communicate with them as much.
And so we're really spending more time with the families. So it's easier to form a stronger bond with the family than with the patient. But again, at the end of the day, we're there to do a job. So once the job is over and the person dies, then we are no longer seeing the family. That's just how it works in all areas of healthcare.
And so we're really spending more time with the families. So it's easier to form a stronger bond with the family than with the patient. But again, at the end of the day, we're there to do a job. So once the job is over and the person dies, then we are no longer seeing the family. That's just how it works in all areas of healthcare.
Once your disease is treated, you don't go out and have drinks with your oncology nurse, you know, because it's my job. It's what I do. That isn't to say that I didn't care about them, that I don't still think about lots of them. I still do. There are still a lot of family members that I think about and wonder about.
Once your disease is treated, you don't go out and have drinks with your oncology nurse, you know, because it's my job. It's what I do. That isn't to say that I didn't care about them, that I don't still think about lots of them. I still do. There are still a lot of family members that I think about and wonder about.
But my agency and most agencies will not let you maintain a relationship with the family once the patient dies. It's not ethical to do that.
But my agency and most agencies will not let you maintain a relationship with the family once the patient dies. It's not ethical to do that.
Yeah, I think cancer is probably one of the top. Medicare will publish the list of the top diagnoses, and I believe cancer is probably the top diagnosis for.
Yeah, I think cancer is probably one of the top. Medicare will publish the list of the top diagnoses, and I believe cancer is probably the top diagnosis for.
Heart disease, dementia. Yeah. ALS, you know, down the line. ALS, Huntington's, we see Huntington's, Correa, that's pretty awful. We used to have failure to thrive, which is just old people with a whole bunch of conditions that are all coming together. And then Medicare said, we can't use that anymore. And So then we had debility not otherwise specified and they said you can't use that anymore.
Heart disease, dementia. Yeah. ALS, you know, down the line. ALS, Huntington's, we see Huntington's, Correa, that's pretty awful. We used to have failure to thrive, which is just old people with a whole bunch of conditions that are all coming together. And then Medicare said, we can't use that anymore. And So then we had debility not otherwise specified and they said you can't use that anymore.
So the doctors are always trying to figure out like what is the terminal diagnosis for this person because you have to have one for them to qualify for hospice. So if it might be renal failure if they're diabetic and their kidneys fail.
So the doctors are always trying to figure out like what is the terminal diagnosis for this person because you have to have one for them to qualify for hospice. So if it might be renal failure if they're diabetic and their kidneys fail.
Yeah. There you go. Cancer, dementia. I don't have my glasses on, so I can't read the heart disease. Yeah.
Yeah. There you go. Cancer, dementia. I don't have my glasses on, so I can't read the heart disease. Yeah.
Lung disease. Yeah. Lung disease. Liver disease is probably on there somewhere too. Yeah. But cancer, number one.
Lung disease. Yeah. Lung disease. Liver disease is probably on there somewhere too. Yeah. But cancer, number one.
Smoking, drinking, that's another thing that'll make you quit. Although ironically, you know, I was a hospice nurse for 16 years before I quit drinking. But yeah, for sure. I've had a lot of, and that's, I talk about that in my book too, you know, that really made me reflect a lot when I was taking care of patients who were dying from smoking or drinking. I was a three pack a day smoker. I've,
Smoking, drinking, that's another thing that'll make you quit. Although ironically, you know, I was a hospice nurse for 16 years before I quit drinking. But yeah, for sure. I've had a lot of, and that's, I talk about that in my book too, you know, that really made me reflect a lot when I was taking care of patients who were dying from smoking or drinking. I was a three pack a day smoker. I've,
I worked in the greater Seattle area and the traffic got to be so much I could not stand the commute anymore. And so I was just ready to kind of branch out and learn more. And I'm happy that I did because now I'm really well-rounded when it comes to hospice. I don't just know about the death and dying journey and the grief journey.
I worked in the greater Seattle area and the traffic got to be so much I could not stand the commute anymore. And so I was just ready to kind of branch out and learn more. And I'm happy that I did because now I'm really well-rounded when it comes to hospice. I don't just know about the death and dying journey and the grief journey.
quit now for I think 32 years it's been since I quit but I worked in bars for eight years I was a bartender and I smoked like a chimney and so like whoa I'm very very lucky that I didn't end up with a smoking related disease but yeah smoking is bad and and those types of diseases are hard to watch people die from um
quit now for I think 32 years it's been since I quit but I worked in bars for eight years I was a bartender and I smoked like a chimney and so like whoa I'm very very lucky that I didn't end up with a smoking related disease but yeah smoking is bad and and those types of diseases are hard to watch people die from um
It's really hard to watch your person die from liver disease when they have just extreme agitation and confusion, combativeness. It's really, really hard for families to see their person devolve into that condition. For patients dying from smoking-related diseases to feel air hunger, suffocation, they can't breathe, they can't get their breath is very...
It's really hard to watch your person die from liver disease when they have just extreme agitation and confusion, combativeness. It's really, really hard for families to see their person devolve into that condition. For patients dying from smoking-related diseases to feel air hunger, suffocation, they can't breathe, they can't get their breath is very...
very hard to watch and hard for them to experience suffering.
very hard to watch and hard for them to experience suffering.
Wow. How long has she been like that?
Wow. How long has she been like that?
And nobody called EMS or anything?
And nobody called EMS or anything?
She must've lived in an isolated place and didn't have neighbors or neighbors that care.
She must've lived in an isolated place and didn't have neighbors or neighbors that care.
Yeah.
Yeah.
Oh my gosh. That's,
Oh my gosh. That's,
Three hours is a lot for someone to be on the ground.
Three hours is a lot for someone to be on the ground.
I also know about the regulations, the laws, the quality metrics, that type of thing.
I also know about the regulations, the laws, the quality metrics, that type of thing.
I imagine they medicated her. Like we don't extubate people before medicating them. Hospice does compassionate extubation.
I imagine they medicated her. Like we don't extubate people before medicating them. Hospice does compassionate extubation.
We medicate people before we would pull that tube out. I say we, the doctor pulls it out. And I've never seen it done. I know that we do it, but I've never seen it done. They usually extubate them before they send them to the care center. But people gasp at the end of life. That's very, very normal breathing pattern. We call it agonal breathing, fish out of water breathing, where they look like,
We medicate people before we would pull that tube out. I say we, the doctor pulls it out. And I've never seen it done. I know that we do it, but I've never seen it done. They usually extubate them before they send them to the care center. But people gasp at the end of life. That's very, very normal breathing pattern. We call it agonal breathing, fish out of water breathing, where they look like,
And people, this is one of the things I educate about because people are thinking, oh my God, they can't breathe. They're suffocating. It's awful. But really, they're not experiencing that anymore. It's an autonomic breathing pattern that they're doing. Everybody, almost everybody does that at the end of life when they die a natural death.
And people, this is one of the things I educate about because people are thinking, oh my God, they can't breathe. They're suffocating. It's awful. But really, they're not experiencing that anymore. It's an autonomic breathing pattern that they're doing. Everybody, almost everybody does that at the end of life when they die a natural death.
Yeah, that's not normal. Normally they get morphine as the gold standard for that, and Versed would sedate somebody. How long ago was that?
Yeah, that's not normal. Normally they get morphine as the gold standard for that, and Versed would sedate somebody. How long ago was that?
Right now I work three days a week. I'm a hospice quality assurance nurse. I was a hospice quality manager, but I'm on my way out the door. I'm getting ready to retire. And so I'm just doing some quality assurance stuff until June. And then after that, I actually plan on going back to work in a hospice or at, not in a hospice, but for a hospice doing visits.
Right now I work three days a week. I'm a hospice quality assurance nurse. I was a hospice quality manager, but I'm on my way out the door. I'm getting ready to retire. And so I'm just doing some quality assurance stuff until June. And then after that, I actually plan on going back to work in a hospice or at, not in a hospice, but for a hospice doing visits.
Yeah, I guess hopefully they're better at it now, but compassionate extubation.
Yeah, I guess hopefully they're better at it now, but compassionate extubation.
yeah they medicate them first they don't just pull out the right yeah they don't do that i thought that she was you know just totally gone yeah so she you know but uh as it turned out she was i guess not quite there yeah and even if they thought she was gone they should still be medicating yeah right yeah we still medicate people who are actively dying you know we assess for discomfort on and we can tell when people are uncomfortable we look at their face you know they're
yeah they medicate them first they don't just pull out the right yeah they don't do that i thought that she was you know just totally gone yeah so she you know but uh as it turned out she was i guess not quite there yeah and even if they thought she was gone they should still be medicating yeah right yeah we still medicate people who are actively dying you know we assess for discomfort on and we can tell when people are uncomfortable we look at their face you know they're
They get furrowed forehead, and you can tell when they're uncomfortable. So even when someone's actively dying, we will medicate them just to make sure. Morphine is the gold standard. So it's what we've used for decades successfully, and it's cheap. And hospice doesn't really get paid a lot of money. Hospice is paid a daily flat rate for every patient, no matter what we're doing for that person.
They get furrowed forehead, and you can tell when they're uncomfortable. So even when someone's actively dying, we will medicate them just to make sure. Morphine is the gold standard. So it's what we've used for decades successfully, and it's cheap. And hospice doesn't really get paid a lot of money. Hospice is paid a daily flat rate for every patient, no matter what we're doing for that person.
It's not like if you go to the ER and they give you a little basin to puke in, there's a yellow ticket on there, they stick it on your chart. And everything that you get in the ER, they have a yellow label on it and they put it on your chart and they bill you for each thing that they give you. Hospice is a flat rate. So whatever we do for our patients, we get paid the same no matter what it is.
It's not like if you go to the ER and they give you a little basin to puke in, there's a yellow ticket on there, they stick it on your chart. And everything that you get in the ER, they have a yellow label on it and they put it on your chart and they bill you for each thing that they give you. Hospice is a flat rate. So whatever we do for our patients, we get paid the same no matter what it is.
So we are always looking for the least expensive way to do things and morphine is cheap. And it's tried and true. And it really is the gold standard for treating shortness of breath or air hunger where they can't catch their breath. It works so well. So that is typically what we use. But we use other opioids as well if we need to. Oxycodone, Dilaudid, fentanyl, methadone.
So we are always looking for the least expensive way to do things and morphine is cheap. And it's tried and true. And it really is the gold standard for treating shortness of breath or air hunger where they can't catch their breath. It works so well. So that is typically what we use. But we use other opioids as well if we need to. Oxycodone, Dilaudid, fentanyl, methadone.
There are lots of other medications that we use. Fentanyl patches, fentanyl lollipops. Okay. Yep. Fentanyl infusions. We don't use fentanyl infusions in home hospice as much just because of the way we deliver infusions at home is usually through a subcutaneous route, which is just a little tiny catheter under the skin and fentanyl concentration is too high or too low.
There are lots of other medications that we use. Fentanyl patches, fentanyl lollipops. Okay. Yep. Fentanyl infusions. We don't use fentanyl infusions in home hospice as much just because of the way we deliver infusions at home is usually through a subcutaneous route, which is just a little tiny catheter under the skin and fentanyl concentration is too high or too low.
And it requires more volume than a person's body can absorb with that method. So it's better for somebody that has a port, you know, like intravenous access.
And it requires more volume than a person's body can absorb with that method. So it's better for somebody that has a port, you know, like intravenous access.
If they have the ability to make the decision, then yes. It's always up to the patient. The family does not have that decision-making capability until the patient can no longer decide for themselves, and then it's whoever their legal healthcare representative is.
If they have the ability to make the decision, then yes. It's always up to the patient. The family does not have that decision-making capability until the patient can no longer decide for themselves, and then it's whoever their legal healthcare representative is.
And it's important to make sure that you have a legal health care representative that will speak on your behalf for what you want and that you tell them what you want. Because a lot of people, if they don't know, are going to err on the side of what would they want for themselves or what do they feel is best.
And it's important to make sure that you have a legal health care representative that will speak on your behalf for what you want and that you tell them what you want. Because a lot of people, if they don't know, are going to err on the side of what would they want for themselves or what do they feel is best.
And if they're afraid of a drug, morphine, fentanyl, whatever, then they're more likely to say, no, I don't want them to have that. So, you know, you really have to have conversations with your decision maker.
And if they're afraid of a drug, morphine, fentanyl, whatever, then they're more likely to say, no, I don't want them to have that. So, you know, you really have to have conversations with your decision maker.
Not often, but sometimes. And usually when that happens, they haven't designated a health care representative. And so you've got family members. Now there's a hierarchy in my state. I don't know how all states work, but in my state, it's the spouse first if you're married. If you're not married and you have adult children, it's your adult children.
Not often, but sometimes. And usually when that happens, they haven't designated a health care representative. And so you've got family members. Now there's a hierarchy in my state. I don't know how all states work, but in my state, it's the spouse first if you're married. If you're not married and you have adult children, it's your adult children.
If you don't have adult children, it's your parents if they're living. If they're not living, it's your siblings. So, for example, I have a patient with five siblings. They all have to agree on whatever it is that we're going to be doing. And they may not be on the same page with each other. And that can delay care to a person because they're trying to decide, like, what are we going to do?
If you don't have adult children, it's your parents if they're living. If they're not living, it's your siblings. So, for example, I have a patient with five siblings. They all have to agree on whatever it is that we're going to be doing. And they may not be on the same page with each other. And that can delay care to a person because they're trying to decide, like, what are we going to do?
We're all wanting this, but Mary is wanting that. And they all have to be in agreement.
We're all wanting this, but Mary is wanting that. And they all have to be in agreement.
I live in a very rural county now and it's sparsely populated. I've always thought it would be fun to do that kind of home hospice nursing where I'm driving, but I'm in the countryside. I'm not stuck in traffic, traffic jams or cattle crossing the road, you know? So I do want to eventually go back to just doing kind of what we call per diem nursing. It's as needed.
I live in a very rural county now and it's sparsely populated. I've always thought it would be fun to do that kind of home hospice nursing where I'm driving, but I'm in the countryside. I'm not stuck in traffic, traffic jams or cattle crossing the road, you know? So I do want to eventually go back to just doing kind of what we call per diem nursing. It's as needed.
Well, I have a great story about this in my book. I had a patient whose son was living with her, her adult son, and he was not accepting that she was dying. And he was not providing very good care to her. She was getting wounds. And we see wounds on patients' bed sores. It's what they used to be called, pressure ulcers. And he wasn't medicating her appropriately. She had broken hip.
Well, I have a great story about this in my book. I had a patient whose son was living with her, her adult son, and he was not accepting that she was dying. And he was not providing very good care to her. She was getting wounds. And we see wounds on patients' bed sores. It's what they used to be called, pressure ulcers. And he wasn't medicating her appropriately. She had broken hip.
And she was, every time I went to see her, she was in excruciating pain. And I would have to like, give me the medication. And he was not the legal decision maker. His sister was. But she worked in a bank. She had a high paying position, high, you know, important position and was not always there. And so the son was taking care of the mom. And he wasn't medicating her.
And she was, every time I went to see her, she was in excruciating pain. And I would have to like, give me the medication. And he was not the legal decision maker. His sister was. But she worked in a bank. She had a high paying position, high, you know, important position and was not always there. And so the son was taking care of the mom. And he wasn't medicating her.
And so I finally had to my social worker and I had to call his sister and get her involved. And she ended up getting custody of her, taking custody of her and putting her into a nursing home. And he was going to the nursing home and badgering the nurses and getting in the way of her getting care and telling him, you can't medicate her. You can't give her morphine.
And so I finally had to my social worker and I had to call his sister and get her involved. And she ended up getting custody of her, taking custody of her and putting her into a nursing home. And he was going to the nursing home and badgering the nurses and getting in the way of her getting care and telling him, you can't medicate her. You can't give her morphine.
I don't want her to have morphine. And they finally kicked him out and said, you can't come back. And I was there visiting her and he showed up with a friend and was going to try to bully his way in there. And I said, you can't come in here. and they were going to call security and his friend was like, man, let's just get out of here. Let's, we don't want to cause any trouble, you know?
I don't want her to have morphine. And they finally kicked him out and said, you can't come back. And I was there visiting her and he showed up with a friend and was going to try to bully his way in there. And I said, you can't come in here. and they were going to call security and his friend was like, man, let's just get out of here. Let's, we don't want to cause any trouble, you know?
And he went outside and I went out, this guy was tall and I was just like, right here, looking up at this big guy. And I said, you cannot keep bullying the staff. Your mom is dying. And if you want to be with her, you have to let them take care of her. And I saw this guy just Break down in tears. It was heartbreaking, really, because he just wanted to do what he thought was right for his mom.
And he went outside and I went out, this guy was tall and I was just like, right here, looking up at this big guy. And I said, you cannot keep bullying the staff. Your mom is dying. And if you want to be with her, you have to let them take care of her. And I saw this guy just Break down in tears. It was heartbreaking, really, because he just wanted to do what he thought was right for his mom.
But he but he wasn't acting on her behalf. He's acting on his own. I hate to use the word selfishness, but it is what it is. He didn't want to lose his mom. And so I was able to get him to agree that he wouldn't interfere anymore. And she was really lingering too. She had been lingering in the nursing home for a while, past where we thought she should have died.
But he but he wasn't acting on her behalf. He's acting on his own. I hate to use the word selfishness, but it is what it is. He didn't want to lose his mom. And so I was able to get him to agree that he wouldn't interfere anymore. And she was really lingering too. She had been lingering in the nursing home for a while, past where we thought she should have died.
But I went back in and I spoke with his staff and I said, he will behave himself. He'll let you do care with her. And he went back in and he sat with her and he held her hand and she died that day with him there. So she needed for him to be there, but he wasn't able to be there as long as he was interfering with her care. So that's one that really, really sticks out in my mind.
But I went back in and I spoke with his staff and I said, he will behave himself. He'll let you do care with her. And he went back in and he sat with her and he held her hand and she died that day with him there. So she needed for him to be there, but he wasn't able to be there as long as he was interfering with her care. So that's one that really, really sticks out in my mind.
Yeah.
Yeah.
Yes. Yeah. Yes. Okay. I knew you were going to go there. That's another favorite topic of mine. Yeah. Because many people, so people do seem to have control over when they die, whether it's they're waiting for something or someone, or they're waiting for someone to leave. Yeah. And more commonly, I've seen them waiting for someone to leave. And that makes the family feel so bad.
Yes. Yeah. Yes. Okay. I knew you were going to go there. That's another favorite topic of mine. Yeah. Because many people, so people do seem to have control over when they die, whether it's they're waiting for something or someone, or they're waiting for someone to leave. Yeah. And more commonly, I've seen them waiting for someone to leave. And that makes the family feel so bad.
They feel so guilty. I was with him. I sat there by the bedside for the whole day. I stepped out to go pee. I came back. He was dead. And it happens so often that we do believe that people have the ability to control when they want to die.
They feel so guilty. I was with him. I sat there by the bedside for the whole day. I stepped out to go pee. I came back. He was dead. And it happens so often that we do believe that people have the ability to control when they want to die.
So if somebody needs me to go out in the middle of the night, then I would, I would do that.
So if somebody needs me to go out in the middle of the night, then I would, I would do that.
I think they're holding on and waiting for that time. And then when they finally leave, they're able to do it. It's amazing to see that. I have vivid memories of being at the care center. I can picture it in my mind right now, this room full of people and the lady in there dying. And one of them, the adult son, came out and said, you know... We're going to go get breakfast.
I think they're holding on and waiting for that time. And then when they finally leave, they're able to do it. It's amazing to see that. I have vivid memories of being at the care center. I can picture it in my mind right now, this room full of people and the lady in there dying. And one of them, the adult son, came out and said, you know... We're going to go get breakfast.
We think we need to leave for a few minutes. And the door had just shut after the last one of them left and gone just like that.
We think we need to leave for a few minutes. And the door had just shut after the last one of them left and gone just like that.
And his uncle raised him. He was very, very close to him. And he was like, I am not leaving. I want to be with him. He raised me and I want to be with him when he takes his last breath. And he was there day after day after day for like a week. And finally, we said, you know, you're probably okay to go get something to eat because he was living on the soup and cookies at the hospice care center.
And his uncle raised him. He was very, very close to him. And he was like, I am not leaving. I want to be with him. He raised me and I want to be with him when he takes his last breath. And he was there day after day after day for like a week. And finally, we said, you know, you're probably okay to go get something to eat because he was living on the soup and cookies at the hospice care center.
I love hospice nursing, yes. Not necessarily quality assurance. I did love it. I was able to do a lot in terms of helping other colleagues of mine to learn about hospice. I did vigil volunteer training, so teaching our vigil volunteers what the dying process is like. So I've done many, many things as a quality nurse that I really loved, but I do miss the patient care. That's what I really love.
I love hospice nursing, yes. Not necessarily quality assurance. I did love it. I was able to do a lot in terms of helping other colleagues of mine to learn about hospice. I did vigil volunteer training, so teaching our vigil volunteers what the dying process is like. So I've done many, many things as a quality nurse that I really loved, but I do miss the patient care. That's what I really love.
Just right up the road, there's a restaurant, you know. Go up there. You'll probably be fine. He's been lingering all this time. Sure enough... He died while his nephew was out of the building. So when he came through the door, we were watching for him. And the other nurse I was working with ran into the room and grabbed her stethoscope. And I walked him down.
Just right up the road, there's a restaurant, you know. Go up there. You'll probably be fine. He's been lingering all this time. Sure enough... He died while his nephew was out of the building. So when he came through the door, we were watching for him. And the other nurse I was working with ran into the room and grabbed her stethoscope. And I walked him down.
And I said, you've got to come on right now. He's taking his last breaths right now. And I walked him down to the room. And she had her stethoscope on her chest. And we grabbed his hand and put his hand in his uncle's hand. And she said, he just died. And so we... We let him think that he was with them when he took his last breath, but his uncle needed for him to not be there.
And I said, you've got to come on right now. He's taking his last breaths right now. And I walked him down to the room. And she had her stethoscope on her chest. And we grabbed his hand and put his hand in his uncle's hand. And she said, he just died. And so we... We let him think that he was with them when he took his last breath, but his uncle needed for him to not be there.
It could be that. It could be that. They're private people. A lot of times people who are very private want to be alone when they die. But also I think it's protective because I've seen moms do that with their kids. They don't want their kids to be present when they die. So... I think it's protective.
It could be that. It could be that. They're private people. A lot of times people who are very private want to be alone when they die. But also I think it's protective because I've seen moms do that with their kids. They don't want their kids to be present when they die. So... I think it's protective.
I mean, we don't really know, but that's just based on what I've seen is that there are people who were very private. I had another patient who's... He was a man with two adult daughters and a second marriage wife that were there and a dog under the bed. When I got there, he transitioned right in front of me. I was just, oh, wow. I think he's going to die any minute.
I mean, we don't really know, but that's just based on what I've seen is that there are people who were very private. I had another patient who's... He was a man with two adult daughters and a second marriage wife that were there and a dog under the bed. When I got there, he transitioned right in front of me. I was just, oh, wow. I think he's going to die any minute.
I really see these very, very end-of-life signs, and I think he's going to die really soon. Each one of the women grabbed a body part One at each hand and one at the foot. And they started stroking his hand. It's okay. It's okay. We're here. It's okay. We're here. And I said, I'm just going to go step out of the room and go do some charting. Come and get me when you're ready.
I really see these very, very end-of-life signs, and I think he's going to die really soon. Each one of the women grabbed a body part One at each hand and one at the foot. And they started stroking his hand. It's okay. It's okay. We're here. It's okay. We're here. And I said, I'm just going to go step out of the room and go do some charting. Come and get me when you're ready.
So I was in the kitchen. I'm like there for 20 or 30 minutes. And I'm thinking, okay. Dang, he should be gone by now. So I went back in there. They're still, it's okay, dad, we're here. And I said, is he the kind of guy that would want you doting on him while he was alive?
So I was in the kitchen. I'm like there for 20 or 30 minutes. And I'm thinking, okay. Dang, he should be gone by now. So I went back in there. They're still, it's okay, dad, we're here. And I said, is he the kind of guy that would want you doting on him while he was alive?
And one of the daughters just looked at me, her eyes got wide and she just dropped his hand and she goes, I got to go to the bathroom. And then the other two women, same thing. They just all just made a beeline for the door. And so then it was just me and the dog was under the bed. So I walked out into the kitchen and I said, you know, sometimes we keep people here.
And one of the daughters just looked at me, her eyes got wide and she just dropped his hand and she goes, I got to go to the bathroom. And then the other two women, same thing. They just all just made a beeline for the door. And so then it was just me and the dog was under the bed. So I walked out into the kitchen and I said, you know, sometimes we keep people here.
We don't mean to, but we keep people here. And for as long as that conversation took, one minute, two minutes, I turned around and walked back in and he was dead when I went back in the room.
We don't mean to, but we keep people here. And for as long as that conversation took, one minute, two minutes, I turned around and walked back in and he was dead when I went back in the room.
Yeah. Or holding on for an event sometimes too, or holding on. And that's, That seems more deliberate. They're more awake when that's happening. I think when it's more profound is when the person is dying and you're like, what is going on? And, you know, I always say, because families will think their person who's dying is suffering if they're lingering.
Yeah. Or holding on for an event sometimes too, or holding on. And that's, That seems more deliberate. They're more awake when that's happening. I think when it's more profound is when the person is dying and you're like, what is going on? And, you know, I always say, because families will think their person who's dying is suffering if they're lingering.
So my catchphrase is lingering does not equal suffering if that person who's dying is comfortable. But it is hard on the family. The family is suffering. And death takes as long as it takes. And sometimes it takes a while. And we don't know what's going on in here when a person's dying. We don't know if they're going through life review. We just don't know.
So my catchphrase is lingering does not equal suffering if that person who's dying is comfortable. But it is hard on the family. The family is suffering. And death takes as long as it takes. And sometimes it takes a while. And we don't know what's going on in here when a person's dying. We don't know if they're going through life review. We just don't know.
But there comes a point when sometimes even us, the hospice professionals, are like, what is keeping them here? And we start to say, is there somebody they haven't talked to? Is there something they were waiting for? And oftentimes it's somebody that they haven't said goodbye to, you know, a sister that lives on the East Coast.
But there comes a point when sometimes even us, the hospice professionals, are like, what is keeping them here? And we start to say, is there somebody they haven't talked to? Is there something they were waiting for? And oftentimes it's somebody that they haven't said goodbye to, you know, a sister that lives on the East Coast.
And I would get the phone and hold the phone up for the patient so that they could hear her voice. And then they would die shortly after that.
And I would get the phone and hold the phone up for the patient so that they could hear her voice. And then they would die shortly after that.
Yes.
Yes.
Yeah. The moment of death is, and even leading up to it, most people are peaceful. When people come on to hospice, usually their initial reaction is fear. Like, oh my gosh, I'm for real dying right now. And you just proved it by putting me on hospice. But they will almost always work through that and get to a place of acceptance and
Yeah. The moment of death is, and even leading up to it, most people are peaceful. When people come on to hospice, usually their initial reaction is fear. Like, oh my gosh, I'm for real dying right now. And you just proved it by putting me on hospice. But they will almost always work through that and get to a place of acceptance and
And then if they're scared of anything, it's not of death or what happens after death. It's either what is dying going to be like for me? Will I suffer? Will I be in pain? How is my family going to be? Those are the things that people worry about when they're dying. And so by the time they're dying, they're usually just okay with the fact that they're dying.
And then if they're scared of anything, it's not of death or what happens after death. It's either what is dying going to be like for me? Will I suffer? Will I be in pain? How is my family going to be? Those are the things that people worry about when they're dying. And so by the time they're dying, they're usually just okay with the fact that they're dying.
I think so, yeah. It's not for everybody. But that could be said of any area of nursing. I would not want to be a pediatric nurse working with little kids. You think, they're so cute, it'll be fun. But when I was doing my clinical rotation in nursing school, I had this adorable little toddler. And I needed to take her IV out. And I was like, oh, she's so cute.
I think so, yeah. It's not for everybody. But that could be said of any area of nursing. I would not want to be a pediatric nurse working with little kids. You think, they're so cute, it'll be fun. But when I was doing my clinical rotation in nursing school, I had this adorable little toddler. And I needed to take her IV out. And I was like, oh, she's so cute.
I had one patient in the hospice care center who was very, very fearful until the end. And he had a lung disease. He was young. He was in his forties. He was alone. His family wasn't present. And I went in there with the hospice aid and I was standing on one side of the bed and I, I took his hand and I gave him all the medication we could possibly throw at him.
I had one patient in the hospice care center who was very, very fearful until the end. And he had a lung disease. He was young. He was in his forties. He was alone. His family wasn't present. And I went in there with the hospice aid and I was standing on one side of the bed and I, I took his hand and I gave him all the medication we could possibly throw at him.
So I'm standing at one side holding his hand. She's at the other side holding his hand. And I could just see the fear on his face. And he was just struggling and struggling. And all of a sudden, he looks up and peace just washed over his face. And then he died. It was unbelievable. And I looked at the aide and I said, have you ever seen anything like that? And she said, never. Have you?
So I'm standing at one side holding his hand. She's at the other side holding his hand. And I could just see the fear on his face. And he was just struggling and struggling. And all of a sudden, he looks up and peace just washed over his face. And then he died. It was unbelievable. And I looked at the aide and I said, have you ever seen anything like that? And she said, never. Have you?
And I was like, never. I mean, it was an experience that words can't do justice. I can't even describe it adequately to see this. It was just like peace. It just, yeah. And that's the only time I've ever really seen somebody be fearful right up until their death.
And I was like, never. I mean, it was an experience that words can't do justice. I can't even describe it adequately to see this. It was just like peace. It just, yeah. And that's the only time I've ever really seen somebody be fearful right up until their death.
Seconds. I mean, I couldn't tell. Just a few seconds. Just like long enough for us to observe this. And then death.
Seconds. I mean, I couldn't tell. Just a few seconds. Just like long enough for us to observe this. And then death.
Terminal lucidity.
Terminal lucidity.
Actively dying is really when a person is usually hours to days away from death. Sometimes they can go for a week. I did have one patient that went for about three weeks. They are completely unresponsive during this time. They're not eating. They're not drinking. They are not putting out a lot in the way of excretion, urinary or fecal output. And we can't get any kind of response out of them.
Actively dying is really when a person is usually hours to days away from death. Sometimes they can go for a week. I did have one patient that went for about three weeks. They are completely unresponsive during this time. They're not eating. They're not drinking. They are not putting out a lot in the way of excretion, urinary or fecal output. And we can't get any kind of response out of them.
There's no meaning or purpose there. in any response that they have. Eyes are almost always open or partially open, although some people will have their eyes closed during this time. And if they are open or partially open, they're going to have that fixed stare I was talking about with the lady that had the nun visitors.
There's no meaning or purpose there. in any response that they have. Eyes are almost always open or partially open, although some people will have their eyes closed during this time. And if they are open or partially open, they're going to have that fixed stare I was talking about with the lady that had the nun visitors.
looking at heaven or whatever you want to call it, like nobody's there, neck hyperextended often, mouth hanging open. This is all because of a lack of muscle control in the face as they're dying and breathing patterns changing all over the place. So they could have deep breathing, shallow, labored, like just... changing from one minute to the next, long periods of no breath at all.
looking at heaven or whatever you want to call it, like nobody's there, neck hyperextended often, mouth hanging open. This is all because of a lack of muscle control in the face as they're dying and breathing patterns changing all over the place. So they could have deep breathing, shallow, labored, like just... changing from one minute to the next, long periods of no breath at all.
We often will see people have a death rattle, which is also known as terminal secretions. So this is because as people get close to the end of life, they're not swallowing anymore. So we're swallowing our spit down all day long and we don't even realize it. But when a person's dying and they're not swallowing, that spit builds up in the airway. So when they're breathing, it makes a gurgling or a
We often will see people have a death rattle, which is also known as terminal secretions. So this is because as people get close to the end of life, they're not swallowing anymore. So we're swallowing our spit down all day long and we don't even realize it. But when a person's dying and they're not swallowing, that spit builds up in the airway. So when they're breathing, it makes a gurgling or a
And I go to take her IV out and she's screaming bloody murder. And I realized that I'm the devil to this child. She hates me. So I think everybody has a place in different areas of nursing, but- I would say hospice, you can't be a shrinking violet. A lot of people have a different perception of what hospice nursing is. They love to refer to us as angels, which is just not true.
And I go to take her IV out and she's screaming bloody murder. And I realized that I'm the devil to this child. She hates me. So I think everybody has a place in different areas of nursing, but- I would say hospice, you can't be a shrinking violet. A lot of people have a different perception of what hospice nursing is. They love to refer to us as angels, which is just not true.
but the patient is unresponsive and unaware that it's happening. And the death rattle is highly predictive. About 77% of people that have a death rattle will die within 48 hours. Also, an end-of-life fever is really common. It doesn't cause the death, it's just a... No, it's just a byproduct of the dying process. Right, right. The fever can develop in like the last 72 hours.
but the patient is unresponsive and unaware that it's happening. And the death rattle is highly predictive. About 77% of people that have a death rattle will die within 48 hours. Also, an end-of-life fever is really common. It doesn't cause the death, it's just a... No, it's just a byproduct of the dying process. Right, right. The fever can develop in like the last 72 hours.
That's really common at the end of life too. But this is just kind of like they're in the holding pattern for however long it takes until they breathe their last breath.
That's really common at the end of life too. But this is just kind of like they're in the holding pattern for however long it takes until they breathe their last breath.
Yeah, that's during the time when we really see that glazed over look in their eyes and it just doesn't appear that they're there anymore.
Yeah, that's during the time when we really see that glazed over look in their eyes and it just doesn't appear that they're there anymore.
I mean, they can see it happening, so they know. And we've been guiding them along the way, hopefully, if we've had enough time while they've been on hospice. But I would say we're looking at a very short period of time. So when we give timeframe estimates to our family members, we give it in a timeframe. We say weeks to months, days to weeks, hours to days, minutes to hours.
I mean, they can see it happening, so they know. And we've been guiding them along the way, hopefully, if we've had enough time while they've been on hospice. But I would say we're looking at a very short period of time. So when we give timeframe estimates to our family members, we give it in a timeframe. We say weeks to months, days to weeks, hours to days, minutes to hours.
And so I would say, you know, it looks like we're probably on our last minutes to hours. And I would also tell people, I'm going to give you the worst case scenario. That way, if I'm right, you're prepared. And if I'm wrong, it's a gift and would give them the estimate.
And so I would say, you know, it looks like we're probably on our last minutes to hours. And I would also tell people, I'm going to give you the worst case scenario. That way, if I'm right, you're prepared. And if I'm wrong, it's a gift and would give them the estimate.
Although when they're in the actively dying phase, this is the time when the family's kind of ready for it to be over, wanting for it to be over. And that's when it becomes more about they're stressed because they're waiting for the person to die, which is anticipatory grief.
Although when they're in the actively dying phase, this is the time when the family's kind of ready for it to be over, wanting for it to be over. And that's when it becomes more about they're stressed because they're waiting for the person to die, which is anticipatory grief.
earlier on, they like to have the bigger numbers, they want to know there's more time left, because they're still appreciating that person being in their life. But once they get into that actively dying phase, and they know what's going to happen, that's when it's a little more difficult when they're kind of, I don't want to say wishing that their person would die, but waiting for that to happen.
earlier on, they like to have the bigger numbers, they want to know there's more time left, because they're still appreciating that person being in their life. But once they get into that actively dying phase, and they know what's going to happen, that's when it's a little more difficult when they're kind of, I don't want to say wishing that their person would die, but waiting for that to happen.
And that feels so wrong to people to be waiting for their person to die.
And that feels so wrong to people to be waiting for their person to die.
There's nothing you can really do. Yeah. You're not communicating with them. They're not communicating with you. You can still talk to them. There's been studies that have shown that people who are dying can still hear up until the last moment of death. So we encourage families to talk with them, lie with them, be with them.
There's nothing you can really do. Yeah. You're not communicating with them. They're not communicating with you. You can still talk to them. There's been studies that have shown that people who are dying can still hear up until the last moment of death. So we encourage families to talk with them, lie with them, be with them.
One of the most compassionate things I ever witnessed was when, first of all, let me preface this by saying, I don't like euphemisms. I don't like to say passed away, gone to heaven. I've seen how confusing that can be for people when they're stressed out and emotional about what's going on with their person. You know, we use the words death, dying, died. It's important to use those words.
One of the most compassionate things I ever witnessed was when, first of all, let me preface this by saying, I don't like euphemisms. I don't like to say passed away, gone to heaven. I've seen how confusing that can be for people when they're stressed out and emotional about what's going on with their person. You know, we use the words death, dying, died. It's important to use those words.
And people will say to me, well, it's just a lot nicer to say passed away. It's just more compassionate to say passed away. And I always say, you can say that somebody died or somebody is dying really compassionately. Like, I don't walk in and say, oh, he's about to kick the bucket. There's a way to be really compassionate. And I was working with a nurse at the hospice care center.
And people will say to me, well, it's just a lot nicer to say passed away. It's just more compassionate to say passed away. And I always say, you can say that somebody died or somebody is dying really compassionately. Like, I don't walk in and say, oh, he's about to kick the bucket. There's a way to be really compassionate. And I was working with a nurse at the hospice care center.
I was a fairly new nurse. She was really experienced. And our patient transitioned and was now actively dying. And so we could see he's probably not going to live very long. People, they maintain kind of the same trajectory on this pathway. So if they transition really quickly, they usually move towards death really quickly. If it takes longer, it's kind of a slower decline.
I was a fairly new nurse. She was really experienced. And our patient transitioned and was now actively dying. And so we could see he's probably not going to live very long. People, they maintain kind of the same trajectory on this pathway. So if they transition really quickly, they usually move towards death really quickly. If it takes longer, it's kind of a slower decline.
So we saw that he was transitioning really fast and that he was going to be dying soon. And his daughter was freaking out. What's happening? What's happening? And this nurse went over to her and she was six feet tall and she looked down at this lady and took her hands in her hands and she looked into her eyes and she said, he's dying. Be with him.
So we saw that he was transitioning really fast and that he was going to be dying soon. And his daughter was freaking out. What's happening? What's happening? And this nurse went over to her and she was six feet tall and she looked down at this lady and took her hands in her hands and she looked into her eyes and she said, he's dying. Be with him.
And she walked her over and she sat her next to him and she put her hand in her dad's hand and she just was able to relax. And then she was able to sit with him until he died. And it was just the most compassionate thing I've ever seen. And she used the word, you know. I just took you all over the place with that. No, that's okay. We went from actively dying to anticipatory grief to euphemisms.
And she walked her over and she sat her next to him and she put her hand in her dad's hand and she just was able to relax. And then she was able to sit with him until he died. And it was just the most compassionate thing I've ever seen. And she used the word, you know. I just took you all over the place with that. No, that's okay. We went from actively dying to anticipatory grief to euphemisms.
They like to say it's a calling. I could kind of say it might be like that. For me, it kind of was. But we have to be really strong. We're dealing with people at what is arguably the worst time in their life, but it's also the most sacred. So we have to have the ability to have the wherewithal to endure the hard parts, but also recognize the really great parts, if that makes sense.
They like to say it's a calling. I could kind of say it might be like that. For me, it kind of was. But we have to be really strong. We're dealing with people at what is arguably the worst time in their life, but it's also the most sacred. So we have to have the ability to have the wherewithal to endure the hard parts, but also recognize the really great parts, if that makes sense.
Oh, yeah, yeah, yeah. It doesn't just happen. It changes at that point. So anticipatory grief... The way I've heard it described that I really like is it's like being forced to watch a whole movie when you know that the ending is bad. And so when it comes to hospice, the movie is your person dying and the ending is their death. And so you're waiting for this thing to happen.
Oh, yeah, yeah, yeah. It doesn't just happen. It changes at that point. So anticipatory grief... The way I've heard it described that I really like is it's like being forced to watch a whole movie when you know that the ending is bad. And so when it comes to hospice, the movie is your person dying and the ending is their death. And so you're waiting for this thing to happen.
Because I've had patients who came on to hospice who didn't know that they were dying. I don't like euphemisms. I don't like to say passed away, gone to heaven. I've seen how confusing that can be for people. We use the words death, dying, died. I prefer now to just live my life and not worry about death and dying. So in a way, working with people who were dying taught me more about living.
Because I've had patients who came on to hospice who didn't know that they were dying. I don't like euphemisms. I don't like to say passed away, gone to heaven. I've seen how confusing that can be for people. We use the words death, dying, died. I prefer now to just live my life and not worry about death and dying. So in a way, working with people who were dying taught me more about living.
And after a while, when that person is then no longer responsive and you feel like they're suffering, again, because they're lingering, that's when you start to feel like, I wish this would be over. And that's when anticipatory grief really kicks in at its highest moment right there, because that's when you are...
And after a while, when that person is then no longer responsive and you feel like they're suffering, again, because they're lingering, that's when you start to feel like, I wish this would be over. And that's when anticipatory grief really kicks in at its highest moment right there, because that's when you are...
you're not only grieving the impending loss of your person, you're feeling the guilt over wishing this would be over, basically wishing their life away. So it's really the peak of anticipatory grief. Anticipatory grief can also be considered practice grieving to help you cope with the death after they've died, although that's a whole different kind of grief.
you're not only grieving the impending loss of your person, you're feeling the guilt over wishing this would be over, basically wishing their life away. So it's really the peak of anticipatory grief. Anticipatory grief can also be considered practice grieving to help you cope with the death after they've died, although that's a whole different kind of grief.
They died or they're dying?
They died or they're dying?
Well, for one thing, as a healthcare professional, we have to be really clear about what we're communicating to people. Like I said, they're stressed, they're emotional, we don't want to be... You know, you don't want to say something like, we've lost him. What does that mean? Where did he go? We want to be really clear.
Well, for one thing, as a healthcare professional, we have to be really clear about what we're communicating to people. Like I said, they're stressed, they're emotional, we don't want to be... You know, you don't want to say something like, we've lost him. What does that mean? Where did he go? We want to be really clear.
If it's a family member wanting to talk about that their person passed away, then, you know, that's fine. You're going to say whatever you want to say for yourself to cope. But really, if I said to you, oh, I heard your dad passed away, to me, it's almost like... we're done now. We're just going to pass over that conversation. We're going to brush it off. Sorry that happened.
If it's a family member wanting to talk about that their person passed away, then, you know, that's fine. You're going to say whatever you want to say for yourself to cope. But really, if I said to you, oh, I heard your dad passed away, to me, it's almost like... we're done now. We're just going to pass over that conversation. We're going to brush it off. Sorry that happened.
If I said to you, I heard your dad died. I am so sorry. I have just given you the opportunity to approach a really difficult subject because you know, I'm not going to shy away from it by using a euphemism. I'm calling it what it is. So it really lets people know that I'm here for you and I'll talk to you about this. I'm ready to go there with you.
If I said to you, I heard your dad died. I am so sorry. I have just given you the opportunity to approach a really difficult subject because you know, I'm not going to shy away from it by using a euphemism. I'm calling it what it is. So it really lets people know that I'm here for you and I'll talk to you about this. I'm ready to go there with you.
Yeah, I don't know. I don't know what that would be. And interestingly, Barbara Carnes, who is a hospice pioneer who's written a ton of literature about death and dying, says that there's no such thing as dying. We're born and then we die and everything in between is life. It's living. And it's true. I mean, it really is. But I don't know of any other way to describe approaching death than dying.
Yeah, I don't know. I don't know what that would be. And interestingly, Barbara Carnes, who is a hospice pioneer who's written a ton of literature about death and dying, says that there's no such thing as dying. We're born and then we die and everything in between is life. It's living. And it's true. I mean, it really is. But I don't know of any other way to describe approaching death than dying.
that would be universally understood.
that would be universally understood.
Yeah. And if you think about it too, it doesn't matter what the word is, it still is what it is. And so I think it's important to use the terms that are more generally known worldwide, like died, dying, death, dead, than to use other words. Because it doesn't change what it was. It still is what it is. They're still dying. They're still dead.
Yeah. And if you think about it too, it doesn't matter what the word is, it still is what it is. And so I think it's important to use the terms that are more generally known worldwide, like died, dying, death, dead, than to use other words. Because it doesn't change what it was. It still is what it is. They're still dying. They're still dead.
So calling it something else doesn't change what happened. But people, again, are so afraid to talk about death and dying, they don't even want to use those words.
So calling it something else doesn't change what happened. But people, again, are so afraid to talk about death and dying, they don't even want to use those words.
Yeah, I could see that for people like us who believe that there is something more, but then there are lots of people who don't. They do think dead is the final thing. Right, right. And I don't think passed away is necessarily any better. Like passed away to where, you know? I would almost think transitioning is good when they're transitioning.
Yeah, I could see that for people like us who believe that there is something more, but then there are lots of people who don't. They do think dead is the final thing. Right, right. And I don't think passed away is necessarily any better. Like passed away to where, you know? I would almost think transitioning is good when they're transitioning.
Moving on, moved on, which then again begs the question, where are they moving on to? But yeah, I don't think there's other terminology that's better for, generally speaking, everybody that could really speak to what it is. I mean, we know that there's death, people die, and it's the end of their body. You know, and then we think there's something beyond that.
Moving on, moved on, which then again begs the question, where are they moving on to? But yeah, I don't think there's other terminology that's better for, generally speaking, everybody that could really speak to what it is. I mean, we know that there's death, people die, and it's the end of their body. You know, and then we think there's something beyond that.
So, I don't know.
So, I don't know.
Yeah. And I think people, there are people who speak in that way, psychic mediums, religious people. But in terms of being a hospice nurse and what's within my scope, you know, it's what it is. It's death. It's the person has clinically died. And beyond what happens there...
Yeah. And I think people, there are people who speak in that way, psychic mediums, religious people. But in terms of being a hospice nurse and what's within my scope, you know, it's what it is. It's death. It's the person has clinically died. And beyond what happens there...
That's open to your belief and your interpretation, and it's not for me to say something that's going to allude to that, because you might be somebody who doesn't believe in that, or have a different belief in that, because you might be a Christian who believes it's heaven, and if I said something that alludes to something other than heaven, like reincarnation, that would be offensive. Right.
That's open to your belief and your interpretation, and it's not for me to say something that's going to allude to that, because you might be somebody who doesn't believe in that, or have a different belief in that, because you might be a Christian who believes it's heaven, and if I said something that alludes to something other than heaven, like reincarnation, that would be offensive. Right.
So as far as the clinical presentation of it, and what I communicate, it's gotta be death and dying, because that's where we've landed with this. But from the philosophical point of view, then yeah, I get exactly what you're saying, that death isn't necessarily the final thing.
So as far as the clinical presentation of it, and what I communicate, it's gotta be death and dying, because that's where we've landed with this. But from the philosophical point of view, then yeah, I get exactly what you're saying, that death isn't necessarily the final thing.
And so then that's why I say if a person wants to say that their person went to heaven or they passed away, then that's perfectly fine. But if you're trying to work in this profession or provide comfort to somebody else, being able to acknowledge that this happened, it's just an easier way to let them know that you're not afraid to talk about that taboo topic of death.
And so then that's why I say if a person wants to say that their person went to heaven or they passed away, then that's perfectly fine. But if you're trying to work in this profession or provide comfort to somebody else, being able to acknowledge that this happened, it's just an easier way to let them know that you're not afraid to talk about that taboo topic of death.
I don't know if I would say that I have ever felt trauma. And I don't know that I would say my colleagues do either. The nurses that I've known that had trauma that were experiencing trauma didn't last in hospice. They left. I remember one distinctly that I worked with at the hospice care center who just cried all the time. And I just thought, why are you here if you hate it so much?
I don't know if I would say that I have ever felt trauma. And I don't know that I would say my colleagues do either. The nurses that I've known that had trauma that were experiencing trauma didn't last in hospice. They left. I remember one distinctly that I worked with at the hospice care center who just cried all the time. And I just thought, why are you here if you hate it so much?
You know, I think people would express regrets more if they were speaking to the chaplain. As a nurse, I've picked up things along the way, but most of the things that people regret are going to be what you expect. They wish they wouldn't have worked so much. They wish they would have stayed in better communication with their family. They wish they would have...
You know, I think people would express regrets more if they were speaking to the chaplain. As a nurse, I've picked up things along the way, but most of the things that people regret are going to be what you expect. They wish they wouldn't have worked so much. They wish they would have stayed in better communication with their family. They wish they would have...
enjoyed food instead of dieting, that kind of thing can come out in conversation with people who are dying. But a lot of time, most of the time, people who are dying are spending less time regretful and more time trying to experience life for as long as they have it left.
enjoyed food instead of dieting, that kind of thing can come out in conversation with people who are dying. But a lot of time, most of the time, people who are dying are spending less time regretful and more time trying to experience life for as long as they have it left.
So they're trying to appreciate the time that they have with their family now, rather than mourning the fact that they didn't have more time with their family before.
So they're trying to appreciate the time that they have with their family now, rather than mourning the fact that they didn't have more time with their family before.
Yeah. Because most people who are dying in natural death will go through that dying process where they are transitioning and then getting into the actively dying stage. And we don't know what words they say along the way are their last words. There are cases where somebody will say last words and then die. My dad did that. He said to the nurse, I'm about ready to hang it up. And then he died.
Yeah. Because most people who are dying in natural death will go through that dying process where they are transitioning and then getting into the actively dying stage. And we don't know what words they say along the way are their last words. There are cases where somebody will say last words and then die. My dad did that. He said to the nurse, I'm about ready to hang it up. And then he died.
Those were his last words. I think it was the one that died. I don't want to kill somebody off that's not dead yet. Jeff Bezos is still alive, right?
Those were his last words. I think it was the one that died. I don't want to kill somebody off that's not dead yet. Jeff Bezos is still alive, right?
Who's the other ones? The famous, the Apple guy.
Who's the other ones? The famous, the Apple guy.
Steve Jobs. Yeah. Famously said, it's beautiful or something like that. It's beautiful. It's beautiful. And then died after that. But most of the time, we don't recognize that somebody is saying their last words until after they've said them. Later on down the road, they've died and we realize that's what they said.
Steve Jobs. Yeah. Famously said, it's beautiful or something like that. It's beautiful. It's beautiful. And then died after that. But most of the time, we don't recognize that somebody is saying their last words until after they've said them. Later on down the road, they've died and we realize that's what they said.
But if we're not writing down every single thing they say along the way, we likely don't even remember what they said. So yeah, people don't say last words and then close their eyes and die very often. It does happen. Happened with my dad. And it's happened with a couple of patients that I've had too. But for the most part, they slip into unresponsiveness and then they die after a short time.
But if we're not writing down every single thing they say along the way, we likely don't even remember what they said. So yeah, people don't say last words and then close their eyes and die very often. It does happen. Happened with my dad. And it's happened with a couple of patients that I've had too. But for the most part, they slip into unresponsiveness and then they die after a short time.
So I wasn't present when the patient that I'm thinking of had his last words, but he was estranged from his son. And this is a patient that was probably one of the most trying patients I've ever had in my career. Long story about him. It's all in my book.
So I wasn't present when the patient that I'm thinking of had his last words, but he was estranged from his son. And this is a patient that was probably one of the most trying patients I've ever had in my career. Long story about him. It's all in my book.
he ended up in a hospice care center and was lingering for quite some time, way past when he should have been still alive, but he was not actively dying. He was still very much transitioning and alive. And his son came to visit him and forgave him for not being more present in his life. And he said, thank you. Now I can go. And he closed his eyes and died. Wow. Yeah. So that was pretty amazing.
he ended up in a hospice care center and was lingering for quite some time, way past when he should have been still alive, but he was not actively dying. He was still very much transitioning and alive. And his son came to visit him and forgave him for not being more present in his life. And he said, thank you. Now I can go. And he closed his eyes and died. Wow. Yeah. So that was pretty amazing.
There's words, but we don't know which ones are the last ones.
There's words, but we don't know which ones are the last ones.
People talk and then they're not talking anymore.
People talk and then they're not talking anymore.
So like I said, unless you've written everything down, you're not going to be able to look back at that and go, oh, those were the last words. It's really the ones that we remember as last words are the ones where they say the words and then they die. which doesn't happen very often.
So like I said, unless you've written everything down, you're not going to be able to look back at that and go, oh, those were the last words. It's really the ones that we remember as last words are the ones where they say the words and then they die. which doesn't happen very often.
Oh, wow. Wow. That's right. Yeah. Yeah. Yeah. Oh, wow. Wow.
Oh, wow. Wow. That's right. Yeah. Yeah. Yeah. Oh, wow. Wow.
Yeah.
Yeah.
Yeah.
Yeah.
And she finally quit. And I saw her about a year later in the hospital. And she looked fantastic. And she was working in a dialysis department. And she said, I love it. It's the best job ever. I'm so happy that I did this. And I was like, okay, you know, it's just, it's not for everybody. I think if it's, if it's too trauma causing, then you don't last, you burn out.
And she finally quit. And I saw her about a year later in the hospital. And she looked fantastic. And she was working in a dialysis department. And she said, I love it. It's the best job ever. I'm so happy that I did this. And I was like, okay, you know, it's just, it's not for everybody. I think if it's, if it's too trauma causing, then you don't last, you burn out.
Yes.
Yes.
Well, they think that we intentionally kill our patients.
Well, they think that we intentionally kill our patients.
And why they think that makes sense, I really don't know because when our patients die, we don't get paid anymore.
And why they think that makes sense, I really don't know because when our patients die, we don't get paid anymore.
They think that we make more money the more patients that we have that die faster. Some people have even gone as far as to say we get a bonus when they die, which is absolutely not true. Hospice doesn't make a lot of money, as I explained before. It's a daily rate. It doesn't matter what services we're providing. It's the same for everybody. And when they die, that payment stops.
They think that we make more money the more patients that we have that die faster. Some people have even gone as far as to say we get a bonus when they die, which is absolutely not true. Hospice doesn't make a lot of money, as I explained before. It's a daily rate. It doesn't matter what services we're providing. It's the same for everybody. And when they die, that payment stops.
We don't get paid anymore. So, yeah, there is a group called Murdered by Hospice. And these are primarily people who had no decision making capacity for their person who was on hospice. They were not the legal healthcare representative.
We don't get paid anymore. So, yeah, there is a group called Murdered by Hospice. And these are primarily people who had no decision making capacity for their person who was on hospice. They were not the legal healthcare representative.
Somebody else, either the person who was dying made the decision to go on hospice or another person that they had legally designated to be their healthcare representative made the decision for them to go on hospice. So these are the people that had no control over their person going on hospice and felt that...
Somebody else, either the person who was dying made the decision to go on hospice or another person that they had legally designated to be their healthcare representative made the decision for them to go on hospice. So these are the people that had no control over their person going on hospice and felt that...
hospice intentionally killed whoever it was, their mom, their dad, their husband, their wife, whoever. And so they hate hospice in general because of their experience with it. And because I represent hospice, they come after me.
hospice intentionally killed whoever it was, their mom, their dad, their husband, their wife, whoever. And so they hate hospice in general because of their experience with it. And because I represent hospice, they come after me.
Yeah. Murdered by hospice Facebook group.
Yeah. Murdered by hospice Facebook group.
I do not know how many members. But it's all people who have had a bad experience with hospice and are... And are advocating for hospice to be done away with and trying to educate about how hospice is terrible and you should never put your person on hospice. And some of them are so seemingly delusional, it's like they think that their people would still be alive had they not gone on hospice.
I do not know how many members. But it's all people who have had a bad experience with hospice and are... And are advocating for hospice to be done away with and trying to educate about how hospice is terrible and you should never put your person on hospice. And some of them are so seemingly delusional, it's like they think that their people would still be alive had they not gone on hospice.
And they'll go into the comment section and they'll actually describe situations that I, as a hospice nurse, look at and go, oh, wow, that person is dying and that's appropriate care that they're receiving. And they'll all be saying, no, they shouldn't be doing this. They're going to cause her to death by giving her the morphine and, you know. It's like, no, that person is dying.
And they'll go into the comment section and they'll actually describe situations that I, as a hospice nurse, look at and go, oh, wow, that person is dying and that's appropriate care that they're receiving. And they'll all be saying, no, they shouldn't be doing this. They're going to cause her to death by giving her the morphine and, you know. It's like, no, that person is dying.
You know, the commenter has said she's got end-stage liver failure, and now they're giving her whatever medication. That's appropriate care. And then you've got all these yo-yos in the comments section saying, no, it's stealth euthanasia. They're going to kill her off. Yeah. You know, we do palliative sedation in hospice. So terminal agitation is something we haven't really talked about a lot.
You know, the commenter has said she's got end-stage liver failure, and now they're giving her whatever medication. That's appropriate care. And then you've got all these yo-yos in the comments section saying, no, it's stealth euthanasia. They're going to kill her off. Yeah. You know, we do palliative sedation in hospice. So terminal agitation is something we haven't really talked about a lot.
That can happen during the transition phase when somebody gets extremely agitated. You cannot reason with them. They can't tell you what's wrong. They're completely incoherent. They're trying to get up, trying to get up, restless, sometimes even combative. It's horrible. It's horrible for the person. It's horrible for the family. And we try to medicate them for it with a sedative.
That can happen during the transition phase when somebody gets extremely agitated. You cannot reason with them. They can't tell you what's wrong. They're completely incoherent. They're trying to get up, trying to get up, restless, sometimes even combative. It's horrible. It's horrible for the person. It's horrible for the family. And we try to medicate them for it with a sedative.
And eventually, if we are not able to calm them down enough, we have to do palliative sedation, which is an agreement that's made with the family. We don't just go in there and put people to sleep. We make an informed consent with the family.
And eventually, if we are not able to calm them down enough, we have to do palliative sedation, which is an agreement that's made with the family. We don't just go in there and put people to sleep. We make an informed consent with the family.
Right, exactly. It's for symptom management. That is what it's for. It's not to end their life. It's intended to sedate them until the time of their natural death. This is what we do so that they can be comfortable and calm until their death. It's a horrible thing for them to experience. So we do this, not very often, but we do do this sometimes.
Right, exactly. It's for symptom management. That is what it's for. It's not to end their life. It's intended to sedate them until the time of their natural death. This is what we do so that they can be comfortable and calm until their death. It's a horrible thing for them to experience. So we do this, not very often, but we do do this sometimes.
And they call it stealth euthanasia, that we are secretly killing these people when really they're dying. And that's why this is happening, this terminal agitation.
And they call it stealth euthanasia, that we are secretly killing these people when really they're dying. And that's why this is happening, this terminal agitation.
Exactly. They died because they're dying. Yeah, that's one of my catchphrases. They didn't die because we gave them morphine. They didn't die because we starved them to death, which is another misconception. We don't starve people. I love giving people the food that they want at the end of their life. I did it for my dad.
Exactly. They died because they're dying. Yeah, that's one of my catchphrases. They didn't die because we gave them morphine. They didn't die because we starved them to death, which is another misconception. We don't starve people. I love giving people the food that they want at the end of their life. I did it for my dad.
We gave him a huge plate of every kind of meat there is because my dad was from Texas and he loved that kind of stuff. I love that, but people who are dying are not hungry. Their body is dying. It's going through a dying process, a shutting down process. And it's going to be an energy conservation so that it can complete that process.
We gave him a huge plate of every kind of meat there is because my dad was from Texas and he loved that kind of stuff. I love that, but people who are dying are not hungry. Their body is dying. It's going through a dying process, a shutting down process. And it's going to be an energy conservation so that it can complete that process.
And as a result of that, they're not hungry anymore because digestion is the most energy consuming process in our body. So they're not hungry. They don't need the nutrition. They don't need the calories. So we say, give people what they want. If that's only just a bite of something that they enjoy, that's fine. But we don't force them to eat. We're not going to coerce them.
And as a result of that, they're not hungry anymore because digestion is the most energy consuming process in our body. So they're not hungry. They don't need the nutrition. They don't need the calories. So we say, give people what they want. If that's only just a bite of something that they enjoy, that's fine. But we don't force them to eat. We're not going to coerce them.
We don't condone feeding a person to death, like is what happens in nursing homes with dementia patients. They get fed a more pureed and pureed diet until they're on liquids and you're giving them teaspoons of Ensure to keep them alive, we allow their body to dictate what they need.
We don't condone feeding a person to death, like is what happens in nursing homes with dementia patients. They get fed a more pureed and pureed diet until they're on liquids and you're giving them teaspoons of Ensure to keep them alive, we allow their body to dictate what they need.
But because we're educating about don't force them to eat, we don't tube feed people, we allow their body to die a natural death, they think that we starve people to death.
But because we're educating about don't force them to eat, we don't tube feed people, we allow their body to die a natural death, they think that we starve people to death.
Yeah, and I would say, like when you're talking about first responders and the trauma they're experiencing, that is very different than being a hospice nurse. I know my patients are going to die. That's the expectation. When you're a first responder, you're trying to save someone's life, probably somebody that's
Yeah, and I would say, like when you're talking about first responders and the trauma they're experiencing, that is very different than being a hospice nurse. I know my patients are going to die. That's the expectation. When you're a first responder, you're trying to save someone's life, probably somebody that's
Sure. But there's an amount of Tylenol that's lethal.
Sure. But there's an amount of Tylenol that's lethal.
So it depends on the person. There's no ceiling dose for morphine, meaning that a person can tolerate as much as they can tolerate. So we can go as high as they need without ending their life as long as they're tolerating it. We start people off on low doses of morphine. People who haven't been on a lot of opioids usually start at about five milligrams of morphine.
So it depends on the person. There's no ceiling dose for morphine, meaning that a person can tolerate as much as they can tolerate. So we can go as high as they need without ending their life as long as they're tolerating it. We start people off on low doses of morphine. People who haven't been on a lot of opioids usually start at about five milligrams of morphine.
That is less potent than a Percocet. People don't have a problem with Percocet, but they, for some reason, have this huge fear around morphine. Now, if somebody has cancer, they've probably already been on morphine or oxycodone, Oxycontin, Dilaudid. And so we're going to be giving them more medication as their pain increases. They are more opioid tolerant.
That is less potent than a Percocet. People don't have a problem with Percocet, but they, for some reason, have this huge fear around morphine. Now, if somebody has cancer, they've probably already been on morphine or oxycodone, Oxycontin, Dilaudid. And so we're going to be giving them more medication as their pain increases. They are more opioid tolerant.
But somebody who hasn't really been on a lot of opioids, we start them at a very, very small dose. And then we will increase incrementally as they need it. We don't just blast people with an overdose of morphine. You can cause someone's death if you are going to give them 20 milligrams of morphine or 30 milligrams of morphine when they've never had any. That can cause their death.
But somebody who hasn't really been on a lot of opioids, we start them at a very, very small dose. And then we will increase incrementally as they need it. We don't just blast people with an overdose of morphine. You can cause someone's death if you are going to give them 20 milligrams of morphine or 30 milligrams of morphine when they've never had any. That can cause their death.
But as you are ramping up the morphine, as their body adjusts to it, like I said, there's no ceiling dose. We can give as much as they need to have morphine. over time as they are getting more accustomed to the doses of morphine.
But as you are ramping up the morphine, as their body adjusts to it, like I said, there's no ceiling dose. We can give as much as they need to have morphine. over time as they are getting more accustomed to the doses of morphine.
So people, they'll either respond to it by having their symptoms relieved or they won't. And then we'll need to give them more. And we're usually keeping track of that too. So we will usually start with an as needed. So it might be five milligrams of morphine every four hours as needed. And then if that's not working, it might be every two hours. And then it might be every one hour.
So people, they'll either respond to it by having their symptoms relieved or they won't. And then we'll need to give them more. And we're usually keeping track of that too. So we will usually start with an as needed. So it might be five milligrams of morphine every four hours as needed. And then if that's not working, it might be every two hours. And then it might be every one hour.
And then it might be every 15 minutes until we're getting their pain managed. And then after we've given a certain amount, it depends on how long the person is expected to live. If it's somebody that's going to live for a while, then we're going to try to convert them to a long-acting morphine. So we...
And then it might be every 15 minutes until we're getting their pain managed. And then after we've given a certain amount, it depends on how long the person is expected to live. If it's somebody that's going to live for a while, then we're going to try to convert them to a long-acting morphine. So we...
look at how much morphine they've had, and we calculate how much that is over 24 hours, and then we would give it to them in a long acting dose, or we might start an infusion on them so that they're getting continuous pain relief. We never want to try to chase after pain. We want to get on top of it and we want to stay on top of it.
look at how much morphine they've had, and we calculate how much that is over 24 hours, and then we would give it to them in a long acting dose, or we might start an infusion on them so that they're getting continuous pain relief. We never want to try to chase after pain. We want to get on top of it and we want to stay on top of it.
So oftentimes people will say they were giving morphine even when she didn't need it anymore. She wasn't in pain anymore. Why wasn't she in pain? Because we were giving her morphine. So we still need to be giving that drug so that they can be continuing to have their symptoms.
So oftentimes people will say they were giving morphine even when she didn't need it anymore. She wasn't in pain anymore. Why wasn't she in pain? Because we were giving her morphine. So we still need to be giving that drug so that they can be continuing to have their symptoms.
been in a terrible accident, you know, and you're seeing some pretty horrific things, I would imagine. And even first responders that are responding to just a healthcare crisis, you know, their job is to save that person's life. And if they are unable to do that, that in and of itself can be trauma inducing, because again, That's what they're trained to do is to save them.
been in a terrible accident, you know, and you're seeing some pretty horrific things, I would imagine. And even first responders that are responding to just a healthcare crisis, you know, their job is to save that person's life. And if they are unable to do that, that in and of itself can be trauma inducing, because again, That's what they're trained to do is to save them.
Near as I can tell when I read their comments, which isn't very often just for entertainment once in a while or to get myself spun up unnecessarily. I will go in their comment section. But yeah, it appears that these people did not have the decision making. People can revoke hospice. You don't have to be on hospice. You can at any time say, I don't want hospice.
Near as I can tell when I read their comments, which isn't very often just for entertainment once in a while or to get myself spun up unnecessarily. I will go in their comment section. But yeah, it appears that these people did not have the decision making. People can revoke hospice. You don't have to be on hospice. You can at any time say, I don't want hospice.
So if you are the decision maker and your person is no longer decisional and they're on hospice and you think that hospice is trying to kill them, then you can revoke the benefit. You can say, you know what? I don't want this anymore. So when they're saying this, I'm always thinking, why? Well, if you were the decision maker, then why didn't you do that?
So if you are the decision maker and your person is no longer decisional and they're on hospice and you think that hospice is trying to kill them, then you can revoke the benefit. You can say, you know what? I don't want this anymore. So when they're saying this, I'm always thinking, why? Well, if you were the decision maker, then why didn't you do that?
And if you weren't the decision maker, there's a reason why you weren't the decision maker, because you weren't trusted with that decision. You would have made the wrong choice for your person, causing them to suffer at the end of their life.
And if you weren't the decision maker, there's a reason why you weren't the decision maker, because you weren't trusted with that decision. You would have made the wrong choice for your person, causing them to suffer at the end of their life.
Whenever they need it. Whenever they need it. Yeah, yeah. And usually it's, it's usually something that's given more towards the end of life.
Whenever they need it. Whenever they need it. Yeah, yeah. And usually it's, it's usually something that's given more towards the end of life.
But again, with cancer patients, they're coming to us on opioids already. And so we're just going along with what they're already on and giving them more as they need more because their pain is going to increase as their cancer gets worse before they die.
But again, with cancer patients, they're coming to us on opioids already. And so we're just going along with what they're already on and giving them more as they need more because their pain is going to increase as their cancer gets worse before they die.
Well, from the outside, it would create this. Help me understand what your concerns are about your person getting these medications so that we can talk more about this. From the inside, it's like, oh, my fucking God, not again.
Well, from the outside, it would create this. Help me understand what your concerns are about your person getting these medications so that we can talk more about this. From the inside, it's like, oh, my fucking God, not again.
I just want to throttle you. But no, we'll compassionately explain to them that we use morphine safely. We're not worried about addiction. There's no time for that. And we just want to make them be comfortable until the end of their life. And also pointing out what the person looks like to them too. Like, look at them. Do they look comfortable? They look uncomfortable to me. Do you see this?
I just want to throttle you. But no, we'll compassionately explain to them that we use morphine safely. We're not worried about addiction. There's no time for that. And we just want to make them be comfortable until the end of their life. And also pointing out what the person looks like to them too. Like, look at them. Do they look comfortable? They look uncomfortable to me. Do you see this?
You see this? You see how restless they are? That tells us that they're uncomfortable. Or conversely, yes, we've been giving the morphine and look how peaceful she is. She's comfortable now. Do you remember what she looked like before? Do you remember that she was moaning and every time we turned her, she was stiff? Now she's relaxed. It's working.
You see this? You see how restless they are? That tells us that they're uncomfortable. Or conversely, yes, we've been giving the morphine and look how peaceful she is. She's comfortable now. Do you remember what she looked like before? Do you remember that she was moaning and every time we turned her, she was stiff? Now she's relaxed. It's working.
So we don't want to stop it because we don't want to go backwards and have to try to get on top of that pain again.
So we don't want to stop it because we don't want to go backwards and have to try to get on top of that pain again.
Yeah. I'm definitely their scapegoat. I mean, I've had people... Recently, somebody who in a comment said, you gave my mom too much morphine and she died and you're a killer. And I was like, I didn't even know your mom. I don't know you. I didn't know your mom. She wasn't my patient. I don't know what you're talking about, you know, and go after my license. They want to find out where I work.
Yeah. I'm definitely their scapegoat. I mean, I've had people... Recently, somebody who in a comment said, you gave my mom too much morphine and she died and you're a killer. And I was like, I didn't even know your mom. I don't know you. I didn't know your mom. She wasn't my patient. I don't know what you're talking about, you know, and go after my license. They want to find out where I work.
Their outcome, their good outcome is for that person to live. Our good outcome is for the person to die comfortably, peacefully, and for their family to be prepared for that and not experience... suffering through watching that unfold.
Their outcome, their good outcome is for that person to live. Our good outcome is for the person to die comfortably, peacefully, and for their family to be prepared for that and not experience... suffering through watching that unfold.
uh, the Facebook comment section is, is rich for really hateful things. People are pretty hateful on Facebook and we'll, and we'll say this, she doesn't deserve to be a nurse. She shouldn't be a nurse. What, you know, she's making fun of death. She makes fun of her patients and, you know, I'm just, I'm just their, their scapegoat. Yeah.
uh, the Facebook comment section is, is rich for really hateful things. People are pretty hateful on Facebook and we'll, and we'll say this, she doesn't deserve to be a nurse. She shouldn't be a nurse. What, you know, she's making fun of death. She makes fun of her patients and, you know, I'm just, I'm just their, their scapegoat. Yeah.
Yeah, I mean, there's a lot to be said for levity when it comes to grief. And the reason why I like to use humor when I'm doing these videos that I make is because I've been with families who use humor for coping, and I've seen how really effective that it is. It's a great coping tool.
Yeah, I mean, there's a lot to be said for levity when it comes to grief. And the reason why I like to use humor when I'm doing these videos that I make is because I've been with families who use humor for coping, and I've seen how really effective that it is. It's a great coping tool.
Yeah. which is how I am too. And the people that are on Facebook or the other social media platforms who hate on me for making fun of death or dying don't realize that's social media. And they'll say things to me like, I can't believe you treat a patient like that. I'm not at the bedside of a patient. I'm on TikTok. This is not how I am when I am
Yeah. which is how I am too. And the people that are on Facebook or the other social media platforms who hate on me for making fun of death or dying don't realize that's social media. And they'll say things to me like, I can't believe you treat a patient like that. I'm not at the bedside of a patient. I'm on TikTok. This is not how I am when I am
With people, for real, I am very compassionate and I use humor appropriately when I know that that is appropriate to use with this particular patient and or their family. You know, I pick my spots for sure. I'm a professional. So it's insulting for them to say stuff like that to me, but I also just know that haters gonna hate, you know, and that is what it is.
With people, for real, I am very compassionate and I use humor appropriately when I know that that is appropriate to use with this particular patient and or their family. You know, I pick my spots for sure. I'm a professional. So it's insulting for them to say stuff like that to me, but I also just know that haters gonna hate, you know, and that is what it is.
I know the situation you're, or the... story on the Murdered by Hospice Facebook group you're talking about. I saw that as well. And the reason why the nurses would ask somebody to leave their uncle's room is because they're going to do personal care with him and they want to preserve his dignity. There's nothing nefarious that's happening in there.
I know the situation you're, or the... story on the Murdered by Hospice Facebook group you're talking about. I saw that as well. And the reason why the nurses would ask somebody to leave their uncle's room is because they're going to do personal care with him and they want to preserve his dignity. There's nothing nefarious that's happening in there.
They didn't give him a dose of something to kill him right away when you left the room. They're just trying to protect his dignity. And That's all there is to it. But you wouldn't be able to go into that comment section and respond to them by saying that because they would shut you down. They're not really wanting to hear that. They're just in their grief so beyond deep.
They didn't give him a dose of something to kill him right away when you left the room. They're just trying to protect his dignity. And That's all there is to it. But you wouldn't be able to go into that comment section and respond to them by saying that because they would shut you down. They're not really wanting to hear that. They're just in their grief so beyond deep.
And they're just really enmeshed in their grief. It's become their whole personality to hate. And so I just ignore it most of the time.
And they're just really enmeshed in their grief. It's become their whole personality to hate. And so I just ignore it most of the time.
It's two completely different things. Right, right, right. So euthanasia is legal in Canada. It's what we do to our pets, actually, in the US. And that is when a medical professional is administering a medication to end the life of a being. And that's how they do their medical aid in dying in Canada. A medical professional, a doctor, will administer the medication.
It's two completely different things. Right, right, right. So euthanasia is legal in Canada. It's what we do to our pets, actually, in the US. And that is when a medical professional is administering a medication to end the life of a being. And that's how they do their medical aid in dying in Canada. A medical professional, a doctor, will administer the medication.
In the US, euthanasia is not legal. Medical aid in dying is legal in 10 states and the District of Columbia. And that is very, very strict guidelines for this. You have to have a terminal condition with a no question about it, six months of life expectancy or less to be able to qualify. There's a waiting period. You have to be determined to be of sound mind.
In the US, euthanasia is not legal. Medical aid in dying is legal in 10 states and the District of Columbia. And that is very, very strict guidelines for this. You have to have a terminal condition with a no question about it, six months of life expectancy or less to be able to qualify. There's a waiting period. You have to be determined to be of sound mind.
Nobody else can make the decision for you. You have to make it for yourself. You have to self-administer the medication. Therein lies the difference. A medical professional is not giving you the drug. You are taking it yourself. A family member or a volunteer can mix up the medication and hand it to you, but you have to consume it yourself.
Nobody else can make the decision for you. You have to make it for yourself. You have to self-administer the medication. Therein lies the difference. A medical professional is not giving you the drug. You are taking it yourself. A family member or a volunteer can mix up the medication and hand it to you, but you have to consume it yourself.
Right. And I would wonder too, and I don't know any statistics, but with first responders, how many of their patients actually die and how many of them survive? What's the ratio there? For us, we do have people that survive hospice, but it's a pretty low number. And almost all of them are still terminally ill. They're going to come back to us.
Right. And I would wonder too, and I don't know any statistics, but with first responders, how many of their patients actually die and how many of them survive? What's the ratio there? For us, we do have people that survive hospice, but it's a pretty low number. And almost all of them are still terminally ill. They're going to come back to us.
Ten states and the District of Columbia. I don't know all the states. I know some of them, Washington, Oregon, California, Montana, Vermont. I can't remember the rest of them.
Ten states and the District of Columbia. I don't know all the states. I know some of them, Washington, Oregon, California, Montana, Vermont. I can't remember the rest of them.
Yeah, it's trying to be growing. It's in legislation in other states all the time. They're trying to push it through in other states, but it doesn't really. Oh, yeah, Colorado, Hawaii, Maine, Montana, New Jersey.
Yeah, it's trying to be growing. It's in legislation in other states all the time. They're trying to push it through in other states, but it doesn't really. Oh, yeah, Colorado, Hawaii, Maine, Montana, New Jersey.
Up until last year, you had to be a resident of the state. But last year, Oregon and Vermont passed laws to where you can come into the state and do it there. You don't have to be a resident. Because it's limiting for people who don't live in those states. They have no other resources. And when we don't allow this, people take matters into their own hands.
Up until last year, you had to be a resident of the state. But last year, Oregon and Vermont passed laws to where you can come into the state and do it there. You don't have to be a resident. Because it's limiting for people who don't live in those states. They have no other resources. And when we don't allow this, people take matters into their own hands.
If it's not legal or it's not accessible... And it could be not accessible for a number of reasons, even where it's legal. It might be because the drug for a while cost too much in the state of Washington. It has now come down. They were charging $3,000 for it, so it wasn't accessible to everybody. Or it may not feel accessible to the person because their family members are opposing it. And
If it's not legal or it's not accessible... And it could be not accessible for a number of reasons, even where it's legal. It might be because the drug for a while cost too much in the state of Washington. It has now come down. They were charging $3,000 for it, so it wasn't accessible to everybody. Or it may not feel accessible to the person because their family members are opposing it. And
They want to do it, but their family members are against it. And so they will often take matters into their own hands. And I personally know of patients who have died by suicide in much more horrific and traumatic ways than it would have been had they done medical aid in dying, which is a peaceful death. So I firmly believe it should be federally legal.
They want to do it, but their family members are against it. And so they will often take matters into their own hands. And I personally know of patients who have died by suicide in much more horrific and traumatic ways than it would have been had they done medical aid in dying, which is a peaceful death. So I firmly believe it should be federally legal.
Oh, I think Switzerland. Switzerland. Yeah. Right. And I think maybe some other European countries.
Oh, I think Switzerland. Switzerland. Yeah. Right. And I think maybe some other European countries.
Yeah.
Yeah.
Yeah. They have the Sarco pod in Switzerland now, which is that pod that people can get into. Right. I think it puts carbon dioxide. Nitrogen. Yes. Yeah.
Yeah. They have the Sarco pod in Switzerland now, which is that pod that people can get into. Right. I think it puts carbon dioxide. Nitrogen. Yes. Yeah.
I actually don't know. It's a number of drugs that a pharmacist came up with, and they're dissolved into a liquid, and they have to drink them. Or they could put it in a PEG tube, a stomach feeding tube. Or a rectal catheter is a new way that they're starting to do it now for people who can't swallow.
I actually don't know. It's a number of drugs that a pharmacist came up with, and they're dissolved into a liquid, and they have to drink them. Or they could put it in a PEG tube, a stomach feeding tube. Or a rectal catheter is a new way that they're starting to do it now for people who can't swallow.
So previously, if you couldn't swallow or you had a lot of vomiting with your disease, you couldn't do it because you would not be able to consume the drug. But now there are different ways of them being able to self-administer it. And... Supposedly, it burns a lot when you drink it. It's very burning. Oh, look. Okay. Midazolam. So that's benzodiazepine. That's actually also known as Versed.
So previously, if you couldn't swallow or you had a lot of vomiting with your disease, you couldn't do it because you would not be able to consume the drug. But now there are different ways of them being able to self-administer it. And... Supposedly, it burns a lot when you drink it. It's very burning. Oh, look. Okay. Midazolam. So that's benzodiazepine. That's actually also known as Versed.
And that drug is what we use for palliative sedation, midazolam. Propofol is another sedative that's used often. So rocuronium. So that's something that we do not use in hospice ever. But yeah, it's a combination of drugs.
And that drug is what we use for palliative sedation, midazolam. Propofol is another sedative that's used often. So rocuronium. So that's something that we do not use in hospice ever. But yeah, it's a combination of drugs.
Like your dad.
Like your dad.
And prior to taking this cocktail, and I don't know if this is like what every state uses. I know our state was using a different combination. Like I said, it was $3,000 and then another $3,000. Oh, that's Canada. Oh, that's Canada. Oh, okay. So they came up with a different combination of drugs.
And prior to taking this cocktail, and I don't know if this is like what every state uses. I know our state was using a different combination. Like I said, it was $3,000 and then another $3,000. Oh, that's Canada. Oh, that's Canada. Oh, okay. So they came up with a different combination of drugs.
Right. So... our ratio of death is much higher. And it is, like I said, it's the expected outcome. And we accept that. We accept that's going to happen. And so it's easier for us to not be traumatized when that happens. And there are things that can happen with the human body where you're like, whoa, I didn't know that could happen.
Right. So... our ratio of death is much higher. And it is, like I said, it's the expected outcome. And we accept that. We accept that's going to happen. And so it's easier for us to not be traumatized when that happens. And there are things that can happen with the human body where you're like, whoa, I didn't know that could happen.
I'm not sure how widely they publicize it just because they don't want people maybe making it on their own. But, but typically what happens is first they're going to take a sedative, like a Valium at a van prior to like a couple hours prior to doing the end of life drugs. And then they have to drink the end of life drugs. And I guess it burns a lot when they're drinking it.
I'm not sure how widely they publicize it just because they don't want people maybe making it on their own. But, but typically what happens is first they're going to take a sedative, like a Valium at a van prior to like a couple hours prior to doing the end of life drugs. And then they have to drink the end of life drugs. And I guess it burns a lot when they're drinking it.
So that's kind of a bummer, but yeah, And then the dying process can last anywhere from minutes to hours to a day. So it doesn't always kill them right away. Okay.
So that's kind of a bummer, but yeah, And then the dying process can last anywhere from minutes to hours to a day. So it doesn't always kill them right away. Okay.
No. That would kind of defeat the purpose. Yeah, exactly. No, it's a peaceful death. It's a peaceful experience for the family to watch. Yeah, I haven't personally seen it, but I know many people who have. I've seen it in a documentary that I was able to screen, but yeah, very peaceful way to go.
No. That would kind of defeat the purpose. Yeah, exactly. No, it's a peaceful death. It's a peaceful experience for the family to watch. Yeah, I haven't personally seen it, but I know many people who have. I've seen it in a documentary that I was able to screen, but yeah, very peaceful way to go.
And much better than the alternative if somebody is really convinced that they are going to take matters into their own hands. We've had murder-suicides. Well, in Florida, you had that woman that killed her husband in the hospital. Wasn't that in Florida?
And much better than the alternative if somebody is really convinced that they are going to take matters into their own hands. We've had murder-suicides. Well, in Florida, you had that woman that killed her husband in the hospital. Wasn't that in Florida?
Yeah, yeah. No, I'm pretty sure it was Florida. She actually was in the news again because she was just recently convicted. And I think they're giving her some time in jail, but they had a death pact and she went in with a gun and killed her husband.
Yeah, yeah. No, I'm pretty sure it was Florida. She actually was in the news again because she was just recently convicted. And I think they're giving her some time in jail, but they had a death pact and she went in with a gun and killed her husband.
Yeah.
Yeah.
Yeah. I might be wrong that it was in Florida, but I'm pretty sure that it was. Flora, yeah, that's... Yeah, she just got sentenced.
Yeah. I might be wrong that it was in Florida, but I'm pretty sure that it was. Flora, yeah, that's... Yeah, she just got sentenced.
Oh, she was 76, okay. And I get why she wanted to do that, but I certainly would never condone something like that. She was threatening the staff. There was a standoff. It was traumatizing to the nurses and the doctors who worked there.
Oh, she was 76, okay. And I get why she wanted to do that, but I certainly would never condone something like that. She was threatening the staff. There was a standoff. It was traumatizing to the nurses and the doctors who worked there.
Really horrible. But those are the desperate measures that people will resort to if they don't have an alternative.
Really horrible. But those are the desperate measures that people will resort to if they don't have an alternative.
I don't think so. I don't know. Yeah.
I don't think so. I don't know. Yeah.
Feels like we did. Yeah.
Feels like we did. Yeah.
Infamous. For 15 minutes.
Infamous. For 15 minutes.
Yeah, so my second husband of 10 years and I decided to get divorced, and I needed to have a career, as I was saying before. I decided to go to nursing school, and he was in the military. He was enlisted. So we didn't really qualify for financial aid, nor did we really make enough money to pay for college. And I heard about a woman who had started a website to raise money for her credit card debt.
Yeah, so my second husband of 10 years and I decided to get divorced, and I needed to have a career, as I was saying before. I decided to go to nursing school, and he was in the military. He was enlisted. So we didn't really qualify for financial aid, nor did we really make enough money to pay for college. And I heard about a woman who had started a website to raise money for her credit card debt.
And mind you, this was 20, 21, 22 years ago. This is before Facebook. It's before GoFundMe, before any of that. And I thought, well, if she's getting money for doing that, my cause is much nobler. So I started a website to raise money for nursing school, and I called it Help Me Leave My Husband. And it became kind of world known. At that time, 100,000 hits on a website was a big deal.
And mind you, this was 20, 21, 22 years ago. This is before Facebook. It's before GoFundMe, before any of that. And I thought, well, if she's getting money for doing that, my cause is much nobler. So I started a website to raise money for nursing school, and I called it Help Me Leave My Husband. And it became kind of world known. At that time, 100,000 hits on a website was a big deal.
And you could consider that a little bit traumatizing to know that that's possible to have tumors that are coming out of a person's body leaking fluids everywhere or a catastrophic bleed out can be, you know, pretty traumatic. But they're not as common, you know, in the whole scheme of things.
And you could consider that a little bit traumatizing to know that that's possible to have tumors that are coming out of a person's body leaking fluids everywhere or a catastrophic bleed out can be, you know, pretty traumatic. But they're not as common, you know, in the whole scheme of things.
It was a lot. And, um, and so I, I did a little, um, couple of television shows, Fox national news, a lot of local TV shows, uh, the view the other half. Oh my God.
It was a lot. And, um, and so I, I did a little, um, couple of television shows, Fox national news, a lot of local TV shows, uh, the view the other half. Oh my God.
Yes. That's, uh,
Yes. That's, uh,
Yeah. Yeah, I had the recordings on videotape, and I just recently, my son does IT, and he helped me, and I got the cable to hook his VCR up to my computer so I could download these and put them on my TikTok.
Yeah. Yeah, I had the recordings on videotape, and I just recently, my son does IT, and he helped me, and I got the cable to hook his VCR up to my computer so I could download these and put them on my TikTok.
But yeah, that's me 22 years ago. That's cool.
But yeah, that's me 22 years ago. That's cool.
$2,200, $2,300, something like that. I don't even remember. And it became more about the... the journey instead of the money because I was, I was, it wasn't just asking people for money. I was blogging about my life. I was blogging about going through school. I had a mailbag where people wrote me, um, letters and I would answer the nasty ones.
$2,200, $2,300, something like that. I don't even remember. And it became more about the... the journey instead of the money because I was, I was, it wasn't just asking people for money. I was blogging about my life. I was blogging about going through school. I had a mailbag where people wrote me, um, letters and I would answer the nasty ones.
Like I do answer the nasty Tik TOK comments, you know, very satirically, um, and often putting them in their place. And it was funny and people liked it. And I said, if you like it, send me a buck or two. I was fully open or on page one about why I was doing it, that my husband was a great guy, that we just didn't get along anymore. This wasn't about me wanting to try to stick it to him.
Like I do answer the nasty Tik TOK comments, you know, very satirically, um, and often putting them in their place. And it was funny and people liked it. And I said, if you like it, send me a buck or two. I was fully open or on page one about why I was doing it, that my husband was a great guy, that we just didn't get along anymore. This wasn't about me wanting to try to stick it to him.
And I think what was misleading was that the picture on the website was me with my hands tied behind my back. So it was a view of the backside of me with my hands tied behind my back. So I wasn't showing my face. So people would jump to the conclusion that I was implying that my husband was abusing me, which he wasn't. And I said that right off the go.
And I think what was misleading was that the picture on the website was me with my hands tied behind my back. So it was a view of the backside of me with my hands tied behind my back. So I wasn't showing my face. So people would jump to the conclusion that I was implying that my husband was abusing me, which he wasn't. And I said that right off the go.
First of all, my husband is not abusive, but people wouldn't read that. They would just go ahead and start in with the hate. But it kept me accountable and it kept me focused and on track to be able to accomplish my goal of going through nursing school just so I could say, see, I did it.
First of all, my husband is not abusive, but people wouldn't read that. They would just go ahead and start in with the hate. But it kept me accountable and it kept me focused and on track to be able to accomplish my goal of going through nursing school just so I could say, see, I did it.
Yeah, so if you use GoFundMe at all, you're welcome.
Yeah, so if you use GoFundMe at all, you're welcome.
It was a movement. It was Karen first and then me and then a whole bunch of other people started doing it for all kinds of different reasons. And then after that, and they called it Internet Hand Handling or Cyber Begging.
It was a movement. It was Karen first and then me and then a whole bunch of other people started doing it for all kinds of different reasons. And then after that, and they called it Internet Hand Handling or Cyber Begging.
And then it was still a while, though, before GoFundMe, because GoFundMe, I don't think, still came out until maybe, I don't know when it came out. I'm sure Ryan will pull it up on the screen. Ryan will tell us in a second. But, you know, because this was in 2000, well, I was 40, so I want to say it was in 2002, around that time, 2001, 2002.
And then it was still a while, though, before GoFundMe, because GoFundMe, I don't think, still came out until maybe, I don't know when it came out. I'm sure Ryan will pull it up on the screen. Ryan will tell us in a second. But, you know, because this was in 2000, well, I was 40, so I want to say it was in 2002, around that time, 2001, 2002.
And GoFundMe came around in 2010, so it still took a while before GoFundMe. PayPal was... alive back then. Cause that's what I used. I had a PayPal link on my website for people to send me a buck or two.
And GoFundMe came around in 2010, so it still took a while before GoFundMe. PayPal was... alive back then. Cause that's what I used. I had a PayPal link on my website for people to send me a buck or two.
So it's called Influencing Death, Reframing Dying for Better Living, and it's available wherever books are sold online. There's also an audio version that's on Audible or audiobooks, and I narrated it myself. I started writing stories back when I was first a hospice nurse.
So it's called Influencing Death, Reframing Dying for Better Living, and it's available wherever books are sold online. There's also an audio version that's on Audible or audiobooks, and I narrated it myself. I started writing stories back when I was first a hospice nurse.
So what happened was a few years before TikTok, before I discovered TikTok, I was frustrated with how death was being portrayed on media. I just thought it was phony and misleading and I'm passionate about educating and normalizing it. And so I found this website that Amazon had where you could write a screenplay and they would select screenplays to produce.
So what happened was a few years before TikTok, before I discovered TikTok, I was frustrated with how death was being portrayed on media. I just thought it was phony and misleading and I'm passionate about educating and normalizing it. And so I found this website that Amazon had where you could write a screenplay and they would select screenplays to produce.
amateurs and so i started taking my stories and putting them into this website and making a screenplay out of it and then shortly after that they decided they weren't going to do that anymore so it went away so i shelved it for a while and then i got on tick tock and people kept telling me that i should write a book I don't just talk about hospice and death and dying on my platforms.
amateurs and so i started taking my stories and putting them into this website and making a screenplay out of it and then shortly after that they decided they weren't going to do that anymore so it went away so i shelved it for a while and then i got on tick tock and people kept telling me that i should write a book I don't just talk about hospice and death and dying on my platforms.
I talk about my sober journey, my life. I'm very open about my former drug addiction, my former time in jail, giving up my son, all of that. And I thought, you know what? Once I had 100,000 followers, I thought maybe I should write a book. People seem to be interested and it could be inspiring to others.
I talk about my sober journey, my life. I'm very open about my former drug addiction, my former time in jail, giving up my son, all of that. And I thought, you know what? Once I had 100,000 followers, I thought maybe I should write a book. People seem to be interested and it could be inspiring to others.
So it's a memoir and it's really talking about my earlier life and what led me to be a hospice nurse and juxtaposed with caring for the dying people and how that has impacted me.
So it's a memoir and it's really talking about my earlier life and what led me to be a hospice nurse and juxtaposed with caring for the dying people and how that has impacted me.
Being a hospice nurse?
Being a hospice nurse?
Well, the biggest impact to me has been now having a belief that there is life after death. That was the biggest for me, which helped to resolve my death anxiety. Just getting to that place of acceptance is probably the second biggest thing. And understanding that accepting that we're all going to die someday is the best way to not be afraid of it. Because you can just...
Well, the biggest impact to me has been now having a belief that there is life after death. That was the biggest for me, which helped to resolve my death anxiety. Just getting to that place of acceptance is probably the second biggest thing. And understanding that accepting that we're all going to die someday is the best way to not be afraid of it. Because you can just...
put it on the shelf and not worry about it anymore. You don't have any control over it. So it's, you know, it's just something that's going to happen. And I prefer now to just live my life and not worry about death and dying. So in a way, working with people who were dying taught me more about living.
put it on the shelf and not worry about it anymore. You don't have any control over it. So it's, you know, it's just something that's going to happen. And I prefer now to just live my life and not worry about death and dying. So in a way, working with people who were dying taught me more about living.
So I have a website, hospicenursepenny.com, and there are links to wherever you can purchase my book. There are links to all my social media platforms. I'm on Instagram, TikTok, Facebook, and YouTube, at Hospice Nurse Penny everywhere. There are also resources, some links to resources for people who have need for resources for hospice.
So I have a website, hospicenursepenny.com, and there are links to wherever you can purchase my book. There are links to all my social media platforms. I'm on Instagram, TikTok, Facebook, and YouTube, at Hospice Nurse Penny everywhere. There are also resources, some links to resources for people who have need for resources for hospice.
There's an interview guide for if you're looking for a hospice, questions to ask. So yeah, I've got a lot of information on that website.
There's an interview guide for if you're looking for a hospice, questions to ask. So yeah, I've got a lot of information on that website.
Yep.
Yep.
Oh, gosh, you've done so much for me already, just bringing me down to your beautiful state. Thank you so much. You're very welcome. Oh, cool. Oh, nice.
Oh, gosh, you've done so much for me already, just bringing me down to your beautiful state. Thank you so much. You're very welcome. Oh, cool. Oh, nice.
Oh, Eckhart Tolle.
Oh, Eckhart Tolle.
A friend of mine has AIDS. He's actually survived AIDS. Okay. Back in the 80s when nobody survived AIDS is when he got HIV. Okay. And then full-blown AIDS and thought that he would not live to see our 20th reunion. And now our 45th reunion is coming up because of the new drugs that they found. But he was really big on Eckhart Tolle. Okay. Yeah.
A friend of mine has AIDS. He's actually survived AIDS. Okay. Back in the 80s when nobody survived AIDS is when he got HIV. Okay. And then full-blown AIDS and thought that he would not live to see our 20th reunion. And now our 45th reunion is coming up because of the new drugs that they found. But he was really big on Eckhart Tolle. Okay. Yeah.
series of tapes that I was listening to for a while way back when. So yeah, definitely be interested to read that. Thank you so much.
series of tapes that I was listening to for a while way back when. So yeah, definitely be interested to read that. Thank you so much.
Yeah, me too.
Yeah, me too.
So it happened during COVID.
So it happened during COVID.
you know, we had the shutdown, but my husband and I were still working, but every, everything else was shut down. The grocery stores, the restaurants, the YMCA, where I was working out, he worked nights, I worked days. And so I was super bored. And I heard about Tik TOK and I got on there and totally got sucked in scrolling through.
you know, we had the shutdown, but my husband and I were still working, but every, everything else was shut down. The grocery stores, the restaurants, the YMCA, where I was working out, he worked nights, I worked days. And so I was super bored. And I heard about Tik TOK and I got on there and totally got sucked in scrolling through.
And, uh, you know, it was kind of playing around with some of the trends, trying to learn how to shuffle dance, never dead spoiler alert. Uh, uh, And then one day, I don't know why, but I decided to post a story. And the story that I told was about one of my earlier experiences working in hospice when I had a patient who was an elderly woman and her daughter was a nun.
And, uh, you know, it was kind of playing around with some of the trends, trying to learn how to shuffle dance, never dead spoiler alert. Uh, uh, And then one day, I don't know why, but I decided to post a story. And the story that I told was about one of my earlier experiences working in hospice when I had a patient who was an elderly woman and her daughter was a nun.
And so she had a lot of nuns visiting her all the time. And one evening, the last visitor was in the room with her and she came out to the nurse's station and she said, she's gone. And I said, oh, and I stood up and I grabbed my stethoscope and she said, no, no, no. Her body is still here doing the work of dying, but her spirit has left. You can see it in her eyes. And I was like, what?
And so she had a lot of nuns visiting her all the time. And one evening, the last visitor was in the room with her and she came out to the nurse's station and she said, she's gone. And I said, oh, and I stood up and I grabbed my stethoscope and she said, no, no, no. Her body is still here doing the work of dying, but her spirit has left. You can see it in her eyes. And I was like, what?
Wow, that's really fascinating. I'm going to have to check that out. So as soon as she left, I walked into the room and I looked at this woman and I could see what she was talking about. Her neck was hyperextended, which is really common at the end of life. Mouth was open. Almost always people die with their mouth open.
Wow, that's really fascinating. I'm going to have to check that out. So as soon as she left, I walked into the room and I looked at this woman and I could see what she was talking about. Her neck was hyperextended, which is really common at the end of life. Mouth was open. Almost always people die with their mouth open.
And her eyes were open, which people usually die with their eyes open or partially open. And they were just like she had this fixed gaze, right? And the best way I can describe it is the lights are on, but nobody's there. And I just, what she said just really resonated with me. Like, I get it. Her body is still here. It's still doing this work of dying.
And her eyes were open, which people usually die with their eyes open or partially open. And they were just like she had this fixed gaze, right? And the best way I can describe it is the lights are on, but nobody's there. And I just, what she said just really resonated with me. Like, I get it. Her body is still here. It's still doing this work of dying.
But her spirit, her essence, her soul, whatever you want to call it, has left. It's not in her body anymore. Is it in the room? Maybe. I don't know. Is it just gone to wherever we go after this? I don't know. But you could really sense that she was out of her body. So that video gained a lot of views. It went viral for the time.
But her spirit, her essence, her soul, whatever you want to call it, has left. It's not in her body anymore. Is it in the room? Maybe. I don't know. Is it just gone to wherever we go after this? I don't know. But you could really sense that she was out of her body. So that video gained a lot of views. It went viral for the time.
I'm very, very passionate about advocating for hospice and educating on the end of life. It's my area of expertise. I'm literally a subject matter expert by virtue of being a certified hospice nurse. We're dealing with people at what is arguably the worst time in their life, but it's also the most sacred. Death is really unique to the person who's dying.
I can't remember how many views it got, but over the course of a couple days, all of a sudden, I went from having 100 followers to 10,000 followers. And I was like, oh, okay, I found my niche. I'm very, very passionate about advocating for hospice and educating on the end of life. It's my area of expertise. I'm literally a subject matter expert by virtue of being a certified hospice nurse.
And people were interested in this at a time when everybody was dying because of COVID and People wanted to know more about this thing that happens to all of us. And I was like, wow, this is my thing. I'm going to do this.
Yeah.
Oh, man.
That was your skeleton.
Okay, you asked me about paranormal experiences. There we go, right there.
Yeah.
You know, it's funny because last night... They need to go home with you.
You asked me last night about paranormal experiences, and I just remembered one. I've actually kind of done funny little skits about it on my social media. When I was working, I normally work days. I don't like working nights at all. But every now and then I would pick up a night shift at the hospice care center.
And we had these pagers that would notify us when a person was calling like a room number or the front door and the front door would be locked at eight o'clock. So it would say front door. So my pager would go off front door. I go to the front door. There's nobody there. So that happened like three times. And I finally bumped into the other regular night shift nurse.
And I said, I keep going to the front door because I'm being paged and no one's there. And she just very nonchalantly said, oh, it happens every night. It's just spirits coming to get the patients. And that night we had like three people that died.
Oh, well, my dad coming to me after his death. But I can't really say that I've had any paranormal experiences. I haven't had dreams of my patients that I remember. I might have. When you've taken care of so many people, you forget about these things. Sometimes I'll forget about a patient and then it'll pop into my mind like, oh, that's right. I remember that one.
But there is a feeling when a person dies. There's something in the room energetically. There's a shift that you can sense. I don't see it. I don't hear it. I don't feel it. Well, I do feel it. I don't see it or hear it. I just feel it. Like there's just something different in the room.
But other than that, yeah, I really haven't had a lot of true paranormal experiences related to being a hospice nurse.
Yeah.
Yeah. I mean, I believe it.
No, I didn't before I was a hospice nurse. I had no concept of afterlife, which was very anxiety producing in me. I did have death anxiety because I worried so much about there not being anything afterlife. I never believed in heaven or hell have never been religious. Uh, but becoming a hospice nurse has really helped me to, uh, embrace the possibility of an, the probability of an afterlife.
I think it's fear. It's fear because it's unknown. We used to die in our homes with our family back in the old days. And then medical technology advanced to the point where we could keep people alive longer, albeit most of the time they were in the hospital living longer. And then when they died, they were in the hospital. So we weren't really around death as much anymore.
So I guess also I wonder like what qualifies as a paranormal experience because I've seen people who were deathbed visioning and that could be considered paranormal. So when I have somebody who's telling me, my wife is in the corner, I see her, she's right there, she's coming to get me. You know, I'm experiencing that, I guess, paranormal event through the eyes of my patient.
I don't see her, but I sure as heck believe she's there. You know, it's so convincing when you see someone deathbed visioning. You just cannot rule out the possibility that they really are seeing spirits. It's very, very real to them, and it's just very convincing. So I guess in terms of... You could say maybe that's paranormal, I don't know.
But I haven't seen any ghosts or spirits myself, other than my dad.
Again, it's really hard to put a percentage on it. I've seen it a lot. It's so common that it's in our literature. It's a sign that we consider end-of-life approaching. We developed a tool at my agency to try to determine when people were in their last days of life because Medicare had a quality metric around us making visits to people when they were in their last three days of life.
So we developed a tool with evidence-based information as well as anecdotal and mostly anecdotal because we don't do a lot of testing on people that are dying. And one of the things we put on there was that they are visioning their deceased loved ones or pets. So it's common. And People don't always express that to us. They don't always say that they're seeing those people.
They don't verbalize it, but I don't think that means that they don't see them. Sometimes they're reticent to talk about it because they're afraid that we're going to think they've lost their marbles or they're dismissed by their family who says, we need medication. They're hallucinating. We don't consider deathbed visions hallucinations at all. These are not hallucinations.
So they don't always talk about it. But when people get closer to the end of life, when they're going through this kind of transitioning phase where they're really more dying than they are living, they're kind of turning the corner and heading down that path to where they're going to be actively dying within the next couple of weeks or so. Oftentimes, they're confused and they're not coherent.
They're not able to communicate, but they'll be reaching into the air. And we don't know why they do this. Sometimes we call it reaching for heaven, picking stars. There's also all different terms for it.
But I've come to believe after witnessing so many people deathbed visioning that they are reaching for those visions that they see because so often they are in the corner of the room, they're up in the air. And so I really think that's what's going on.
Yes.
It's usually a person or an animal. It's a person that they know.
They don't really describe the form. And we don't press them for answers either. It's kind of like it's their experience. And so we don't... ask a whole lot of questions. I did ask one patient who told me that his wife was in the corner. Well, I was working at the nurse's station and his room was next to the nurse's station and he was yelling. And I knew that his wife had died a year before him.
And it became more unknown to us. You know, we also have a medical community that is taught how to cure people, how to make people live. So when they die, death is seen as a failure. So there's, you know, many different aspects to why we're kind of afraid of death. But what I've learned being a hospice nurse and watching, you know, thousands of people dying and
And I went into the room and he was looking up at the corner of the room and he was reaching out and he was crying. He had tears just pouring down his face and he was yelling, Ingrid, Ingrid. And I did ask him, was Ingrid your wife? And he said, yes, yes, she's right there. I see her. And I said, is she coming to get you?
And he said, yes, yes, but not today, tomorrow, which I thought was pretty specific. He didn't die the next day. He died a couple of days after that. And the caregiver that knew his wife said that she was always late, was always like her to be late. So we might ask some questions, but we don't ask them, what are they wearing? It's almost like even though you see it so many times, it's still so...
Not unsettling, shocking, just like profound. You just want to experience the moment through their eyes and not really dive into what do they look like? What are they wearing? It's, it's, yeah. Yeah.
I did have a lady help me looking for a cat one time though, at the care center. And I looked for quite a while before she said, Oh my gosh, I just realized that's a cat that I had when I was a kid and she's dead.
Yeah. So they do see pets too.
Yes. Yeah. Transitioning.
We don't really have a name for before the transitioning period. Some people will say it's pre-transitioning. But we're all dying. That's what getting old is. When somebody comes on hospice, they're expected to die within six months or less. Sometimes they live longer than that. But...
And that period of time before they get into transition is kind of not eating, withdrawing socially is really common, sleeping a lot. But as they move into transition, which is in the weeks before their death, It could be weeks to days because everybody has a different kind of trajectory towards the end of their life.
Sometimes they go through the stages super fast and sometimes they linger longer, but usually transitioning is weeks, no more than two or three weeks. And that's when we start seeing the deathbed visioning, travel language where people will say, I need to go home. I need to get out of here. I need to pack.
A lot of times during transition, people are confused and it almost seems like they're here and then they're somewhere else. Like when they're here, they aren't always aware of exactly where they are. And some people will say that's like when the veil is getting thin, which I love that because it makes sense to me. So then they're saying, I need to go home. I need to get out of here.
how they interact with their families and how you can have a good death experience or a bad death experience is that the best way to have the good death experience is to be able to talk about it, to acknowledge it, to know what's happening. People are afraid when they see somebody going through the dying process.
So I've had many patients where I would go to see them and the spouse would say, we argued all night because he kept saying, I need to go home. And I kept telling him, you're in the same house we've been living in for 30 years. Home means something different to them at this point. It can be confusing if they're in the hospital when people do this and say, I want to go home.
And people think, oh, they just want to get out of the hospital and then they die. And it's like, no, they mean something different when they say, I want to go home. They're getting ready to die. Some people will say, I'm dying. I'm going to die soon. And of course, the family's response to that is, no, you're not. You're going to get better. But they know. They know that they're dying.
So, yeah, we see some really profound things during transition. We see the reaching into there. We see people like to do things with their hands. Smokers will be like doing this. People tying flies have had many fishermen who were doing this with their hands. And the family would say, oh, he used to tie flies. He's a fisherman. But they're not really communicating that to us.
They're kind of, like I said, in and out of it. And the other thing that's really amazing that can happen during transition is that a person can have an end of life rally where all of a sudden they just wake up with a burst of energy. They're very lucid. They want to eat a meal when they haven't been eating for days or even weeks. They want you to call all their friends.
Somebody told me once that they had their person on hospice had a rally where they wanted to play bridge. She woke up all of a sudden and said, can you just call my friends? I want to play some bridge. And it doesn't usually last very long. It usually lasts about a day or less. And then they go back into this either transition or actively dying phase where they are close to the end of their lives.
So people think when their person goes through a rally, they think they're getting better. But in reality, we have to manage their expectations because they're close to death when this happens.
Well, I think, yeah, I think they're talking about death, whatever that means to that person. If they believe that it's heaven, then that's what they're probably referring to. But I think just generally speaking, they're talking about leaving earth. They're talking about dying.
They're lucid. Yeah.
Yeah.
Okay. Recognizing people.
I was telling you about a patient that I had who grew up in Germany, but did not speak German for the whole rest of her life. And then at the end, she had some lucidity where she was able to speak German again. So yeah, it's usually recognizing people.
They've never seen it depicted on television or movies unless it's a violent death experience. You know, they're great at making violent death look realistic, but not so much a natural death, which is how most people are going to die. So when they see their person going through these changes, their body going through these changes, it's scary to them.
And I hear this all the time from people who follow me too, who will say, you know, that's a beauty of social media is that whenever I do a video talking about this, people get in my comment section and they validate each other with their experiences. And many, many people will say, yes, my grandmother who had Alzheimer's recognized me and told stories about when I was a kid.
And, you know, it's, it's amazing that this happens. And we don't know why, and it's fairly common. There are statistics on that. It's about four out of 10 dying people will have an end of life rally. And there's theories as to why it happens, but we don't test, we don't do tests on people who are dying. We're not gonna draw blood on somebody who's on hospice.
So we don't have tests, but some doctors have surmised that it might be that as their organs are shutting down, they're releasing hormones.
which makes sense because steroids are hormones and steroids can give people a burst of energy so it makes sense that that could be what it is but i also like the idea of not really knowing because i just think there's something magical about the dying process that makes it more tolerable for us to be able to believe that there's something after we die makes it more acceptable and tolerable.
And so these things that are just unable to be explained, I think are best left that way.
Deathbed visions. Yeah, okay. Absolutely. When I went through nursing school, I learned in chemistry that nothing ever really goes away. It just changes its form, and a lot of times that's into the form of energy. And I believe that... Our spirits live on in the form of energy. So I was a hospice nurse for five years before my dad died.
But already by the time he died, I had formed this belief that there's life after death because of seeing people deathbed visioning. And then when my dad came to me in the form of energy, that was just like, yep. It just firmly convinced me 100%. That's my belief, you know?
It's based on experience, yeah.
They're just beliefs. Right, exactly. But, you know, and I always say I'm not trying to convert... anybody to believe what I believe or to convince them that there's life after death. You can believe what you want. It either is or it isn't. If it isn't, then we won't know because we'll be dead, which my ex-husband used to say to me all the time.
It did not help my death anxiety, by the way, when he said that. But, you know, I just feel like I do believe that there's something after this. If I'm wrong, it won't matter.
But as a hospice nurse, when I tell them that's normal, their relief is palpable. It's like, it is? Yeah, that's normal. We see that all the time.
They usually die within about a week.
And people can go longer than that. Death is really unique to the person who's dying. So sometimes something can be different. But on the average, it's usually they're going to die within about a week. And it almost always lasts less than a day. It's really like a very short window of time.
I don't know. I mean, because I don't know what causes it. So I don't know. If it is like a flood of hormones, you know, maybe it just... excretes out of the body and then it's done. You know, I, I really don't know.
I grew up all over the place. So I was born on Guam. My dad was in the Navy. My mom was Canadian. They met in Washington and Whidbey Island and got married three months after they met. And so I was born on Guam. And I always say I'm an island girl. I was born on Guam, raised on Whidbey Island, but also lived in...
In California, because of the military, I lived in Oregon, I lived in Florida, Connecticut, Okinawa, Japan, but mostly Washington, western Washington, and most recently have been living in eastern Washington. So did not really... embrace college after high school. I thought I was going to be a rock and roll singer, so I didn't need to go to college.
Got pregnant when I was 20, got married to a sailor, so traveled some more, and kind of was a hot mess for a long time. Didn't really get my life together until I was 40. Well, 30, I would say. 27, went through treatment, but prior to that had been a drug addict, gave my son to his dad to raise so I could party. I was a bartender.
I lived in the bars, really aimless, aimless and kind of useless and worthless, but did finally go through treatment when I was 27, turned my life around. remarried a military man again, had a couple of daughters, got my son back. And then 10 years into that marriage started, um, realizing that we just weren't right for each other and decided to get divorced.
Oh. hundreds, maybe into a thousand. I worked in a hospice care, two different hospice care centers for seven years. That was the first part of my hospice career. So at the bedside, in your face, death and dying. Hospice care centers are mostly for people on hospice who have acute symptom management needs that cannot be treated at home. They need to have skilled nursing 24-7.
And because I had been a stay-at-home mom with the kids homeschooling, I needed a career. We knew that, you know, this day and age, you can't really survive on alimony and child support. And so I decided to go to nursing school.
And I really was at a time in my life where I just wanted to make up for all the things that I had done when I was younger and kind of be more productive in society and give back to the universe. And so when trying to decide what kind of a nurse I wanted to be, I thought about my former stepmother-in-law who had died a year before I went to nursing school. She was on hospice.
I felt like the nurses were just very gifted in what they did. The work was sacred. It felt like really special work to me. So I knew that's what I was going to want to do. I also had severe death anxiety.
Yeah. Like I said, my husband would say, well, if there's nothing after we die and you'll have to worry because you'll be dead. And, um, So I always say jokingly, that's what led to our divorce. But so I kind of had a morbid curiosity, a fascination with death. And then I thought maybe this will be like, was it immersion therapy when you expose yourself to something? Maybe that'll help.
I was right, by the way. Uh, so I, um, I became a licensed practical nurse first and I did not think I could work as a hospice nurse being a licensed practical nurse. So I went to work in a clinic and then I was there for a year, then went to work in a hospital for a couple months, got laid off. They lay off LPNs frequently.
And during that time had met somebody new and there was a hospice care center in his neighborhood. And I thought, well, you know what? I should just go see if they're hiring LPNs. And they were. And so I was hired. And then I loved it so much, I stayed with it. And through the years, I got my RN, my BSN, and my certification in hospice and palliative care nursing.
And I've pretty much been in it ever since. So that's like my whole life story condensed down for you.
Still, it's probably too long.
Almost five. It'll be five years in October.
That's awesome. Yeah, congratulations to you. Yeah, thank you. Yeah, I had like a 30-year relapse. Okay. You know, they say alcoholism is progressive, and it is. And definitely, I managed it for a long time. And then came to a point where it was no longer manageable. And I tried everything. There's lots of things that you can try to do to quit drinking.
But in the end, the only thing that works is to stop picking it up and putting it in your mouth.
And although the plan is to bring them in on this higher level of care, get them on the medications they need to be on, stabilize them and send them back home. Most people, when they have a pain crisis or terminal agitation, something that lands them in the care center are close to the end of life. Those things happen close to the end of life. So they usually would die in the care center.
My favorite saying. It's great. It's my signature line in my email. It's so true. Yeah. It's Jean-Pierre Tillard, I think, that said that. Yeah. Yeah. I love it. I mean, yeah, that resonates with me so much.
I really believe that. Right. Yeah. Yeah.
There is a feeling when a person dies, something in the room, energetically. There's a shift that you can sense. I don't see it or hear it, I just feel it, like there's just something different in the room. Their good outcome is for that person to live. Our good outcome is for the person to die comfortably. Hospice doesn't add more days to your life, it adds more life to your days.
Well, normalizing. And we don't, I don't, it's not my job to tell people what I think happens, but I do validate their experiences. If they see that their person is talking about seeing their deceased loved ones, then I validate that. Yeah, we see that all the time. It's really normal. It brings comfort to them, and we don't want to medicate that away.
So it's really more explaining things that are normal and validating what they're seeing. I would never say, yeah, he's seeing spirits of his deceased loved one, because I don't know if that's what they believe. And that would be... Kind of the same as proselytizing, which we also don't do. We don't try to convert people at the end of their life.
If they want to go into, well, what do you think is happening? Do you believe there's spirits? I would say, it sounds like spirituality is really important to you. I would love to have the spiritual care counselor come and see you and talk with you more about this. Because we do have the spiritual care counselors, also known as chaplains, who are trained in that.
They have a master's degree in divinity. That's what they know. That's their knowledge base. And they're coming at it from a learned experience through education, not just their own belief. They understand all the different beliefs that are out there. So it's not for me to try to dive into those conversations with people as much.
Yeah. Again, it's my job to be protective of the patient and to advocate for them. And would ask that they have the chaplain come and talk with them. It sounds like religion is really important to you. He's expressed that it's not as important to him. I think it would be great if we could get the chaplain out here to have a conversation.
Not so much over that. I mean, there's been conflict. I've been fired. If you're a hospice nurse for any length of time, you will have been fired by at least one family who just doesn't get along with you. I'm very straightforward and most people really appreciate that, but there's some that don't want it. They don't want to hear it. They don't want to talk about it.
So I might see five or six people die in a couple of days. I could be off on the weekend and come back to our 20 bed facility and we have a whole new round of patients. Everybody died over the weekend. So it's hard for me to estimate exactly how many I've witnessed their last breath, but it's, it's been in the hundreds for sure.
Uh, so yeah, no, I really haven't had, I think I'm offering them an alternative suggestion. Like how about instead of this, we get somebody in here that can talk with you more about this. Um, and that's what my role is as the nurse is to make sure that I'm the case manager. I'm the one who's managing the care of that person. So I need to identify who on the team because hospice care is a team.
It's not just the nurse. We get all the credit, but, But it's an interdisciplinary team. It's really one of the few areas of health care where there is an interdisciplinary team. There's an aide, there's a chaplain, there's a social worker, there's a doctor, a nurse practitioner, volunteers. The family is part of the team. The patient is part of the team.
So I am to manage the care of the patient by bringing in the appropriate team members.
For addressing the person's spiritual needs. And a lot of times people will just out of hand refuse the chaplain. And I really try to get them to not do that. And I can come from a place of experience with that because having not been religious before, Before I became a hospice nurse, I was going in for major surgery, and the chaplain came to speak with me. It was a military hospital.
He was a priest, so he had a military outfit on with a priest collar, and I thought he was coming to minister to me because he thought I was going to die, and it freaked me out. I was like, I don't want somebody like trying to convert me, you know, and that's not what they do.
And so that's what's really important to me when I'm talking with families is to educate them that the chaplain is not going to try to convert you. We have atheist chaplains in hospice. We have Jewish chaplains. We have Catholic chaplains. We have, you know, every denomination that there is, Buddhist, Muslim, they're all
And they're experts in not only their area of religion that they practice, but all areas of religion and spirituality. So they will help the patient with whatever their identified, self-identified, not what the family identifies, but their self-identified religious or spiritual needs are.
But religion is rooted in spirituality.
And like I said, there are atheist chaplains. So it's not just because some of them are religious, but religion and spirituality are connected to each other.
Yeah, absolutely. Yeah, any chaplain who is proselytizing shouldn't be a chaplain because that's not their job to do that. Right, right. They're knowledgeable in all religion. Like I said, they have a master's degree in divinity. They are knowledgeable in religion, but also as a part of their training, they should know that it's not their job to be pushing their belief onto their patient.
If they are, they're unethical and they shouldn't be a chaplain.
I always start from a place of wanting to find out where they're at with understanding what's going on. And from there going to what do you want to know? And then meeting them where they're at. And sometimes they don't want to know. They don't want to talk about it. So the don'ts are don't go places with them if they're not ready for that.
20 years. 20 years. Yeah. Yeah. And I did patient care for the majority of that time. I also have worked in education, regulatory and quality. I've always been kind of person that wants to learn as much as I can about whatever I'm doing, whether that's being a bartender, you know, or a ice skating attendant or a hospice nurse. And I was ready to leave the bedside, not because of the work itself.
You have to allow them to determine what they're comfortable with talking about. But definitely, what do you understand about this? Because I've had patients who came on to hospice who didn't know that they were dying. I had a patient in the care center who was 28 years old with colon cancer. And she came in because she had severe constipation. And so she came in and we got her...
constipation taken care of. And I was packaging all her medications up for her to go home. And she came out to the nurse's station and I said, oh, I'm just getting your meds ready for you to go home today. And I thought she'd be like thrilled she's going home. And she looked at the medications and she said, those are all for me? And I said, yeah.
And she said, I wasn't on anything before I came here. Why do I have to be on all these meds? And I said, well, the doctor thinks that you have weeks to months left and we want to make sure that your bowels are managed and you don't end up back here again. And she freaked out. Weeks to months? The doctor said I had a year.
So her oncologist told her that she had a year left and then referred her to hospice knowing that the qualification is a life expectancy of six months or less. So that was a lesson for me is know what your patient knows before you go in there with a prognosis. So really finding out what do you understand?
I've had lots of patients that came to hospice and their doctor told them that hospice could give them more help. They don't understand that this is end of life care. And I explained that to them.
Oh, yeah, yeah. I had one patient, very old. He was in his 90s. I think he was like 92. And he had a heart condition, fell and broke his hip and was not a surgical candidate. So they put him on hospice and sent him to us.
at the care center and he was furious he was livid and his wife was too i remember taking her into another room to talk she didn't want to talk about it in front of him i respect that took her into another room and she she was so angry that the doctors wouldn't do surgery because he was too high risk And I said, surgeons, it's their job to do surgery.
So if they're saying they don't want to do it, there really is a risk to it. And they really feel like, you know, he's end of life. And she signed him out and took him home.
I am compassionately, you know, I will say, well, hospice means that, you know, he has, or, or you have whoever I'm speaking to the family or the patient, a life expectancy of six months or less. And of course we don't know for sure. It could be longer, could be shorter, but that is what the doctor is estimating as far as how much time you have left.
And we focus on you living your best life for as long as you have your life. So we're not going to do anything to try to cure your condition, but we are going to make sure that you are as comfortable as you can be while you're still here. I love the saying that hospice doesn't add more days to your life. It adds more life to your days.
The families more usually than the patients because, well, for one thing, patients always come on to hospice way too late. The length of stay is much shorter than we would like for it to be. Most people die in less than six months.
I love working with dying people in their families. There are challenges for sure. Especially when you're a home hospice nurse and you're going into people's houses. I say being a home hospice nurse is like a box of chocolate going into someone's house. You never know what you're going to get. So it's challenging, but I loved it.
And we do have those that stay longer on hospice, usually dementia patients who we don't get to know as well because they are profoundly demented by the time they qualify for hospice. So We interact with the families a lot, especially when the patient becomes unresponsive or they're in that transitioning period where we're not able to communicate with them as much.
And so we're really spending more time with the families. So it's easier to form a stronger bond with the family than with the patient. But again, at the end of the day, we're there to do a job. So once the job is over and the person dies, then we are no longer seeing the family. That's just how it works in all areas of healthcare.
Once your disease is treated, you don't go out and have drinks with your oncology nurse, you know, because it's my job. It's what I do. That isn't to say that I didn't care about them, that I don't still think about lots of them. I still do. There are still a lot of family members that I think about and wonder about.
But my agency and most agencies will not let you maintain a relationship with the family once the patient dies. It's not ethical to do that.
Yeah, I think cancer is probably one of the top. Medicare will publish the list of the top diagnoses, and I believe cancer is probably the top diagnosis for.
Heart disease, dementia. Yeah. ALS, you know, down the line. ALS, Huntington's, we see Huntington's, Correa, that's pretty awful. We used to have failure to thrive, which is just old people with a whole bunch of conditions that are all coming together. And then Medicare said, we can't use that anymore. And So then we had debility not otherwise specified and they said you can't use that anymore.
So the doctors are always trying to figure out like what is the terminal diagnosis for this person because you have to have one for them to qualify for hospice. So if it might be renal failure if they're diabetic and their kidneys fail.
Yeah. There you go. Cancer, dementia. I don't have my glasses on, so I can't read the heart disease. Yeah.
Lung disease. Yeah. Lung disease. Liver disease is probably on there somewhere too. Yeah. But cancer, number one.
Smoking, drinking, that's another thing that'll make you quit. Although ironically, you know, I was a hospice nurse for 16 years before I quit drinking. But yeah, for sure. I've had a lot of, and that's, I talk about that in my book too, you know, that really made me reflect a lot when I was taking care of patients who were dying from smoking or drinking. I was a three pack a day smoker. I've,
I worked in the greater Seattle area and the traffic got to be so much I could not stand the commute anymore. And so I was just ready to kind of branch out and learn more. And I'm happy that I did because now I'm really well-rounded when it comes to hospice. I don't just know about the death and dying journey and the grief journey.
quit now for I think 32 years it's been since I quit but I worked in bars for eight years I was a bartender and I smoked like a chimney and so like whoa I'm very very lucky that I didn't end up with a smoking related disease but yeah smoking is bad and and those types of diseases are hard to watch people die from um
It's really hard to watch your person die from liver disease when they have just extreme agitation and confusion, combativeness. It's really, really hard for families to see their person devolve into that condition. For patients dying from smoking-related diseases to feel air hunger, suffocation, they can't breathe, they can't get their breath is very...
very hard to watch and hard for them to experience suffering.
Wow. How long has she been like that?
And nobody called EMS or anything?
She must've lived in an isolated place and didn't have neighbors or neighbors that care.
Yeah.
Oh my gosh. That's,
Three hours is a lot for someone to be on the ground.
I also know about the regulations, the laws, the quality metrics, that type of thing.
I imagine they medicated her. Like we don't extubate people before medicating them. Hospice does compassionate extubation.
We medicate people before we would pull that tube out. I say we, the doctor pulls it out. And I've never seen it done. I know that we do it, but I've never seen it done. They usually extubate them before they send them to the care center. But people gasp at the end of life. That's very, very normal breathing pattern. We call it agonal breathing, fish out of water breathing, where they look like,
And people, this is one of the things I educate about because people are thinking, oh my God, they can't breathe. They're suffocating. It's awful. But really, they're not experiencing that anymore. It's an autonomic breathing pattern that they're doing. Everybody, almost everybody does that at the end of life when they die a natural death.
Yeah, that's not normal. Normally they get morphine as the gold standard for that, and Versed would sedate somebody. How long ago was that?
Right now I work three days a week. I'm a hospice quality assurance nurse. I was a hospice quality manager, but I'm on my way out the door. I'm getting ready to retire. And so I'm just doing some quality assurance stuff until June. And then after that, I actually plan on going back to work in a hospice or at, not in a hospice, but for a hospice doing visits.
Yeah, I guess hopefully they're better at it now, but compassionate extubation.
yeah they medicate them first they don't just pull out the right yeah they don't do that i thought that she was you know just totally gone yeah so she you know but uh as it turned out she was i guess not quite there yeah and even if they thought she was gone they should still be medicating yeah right yeah we still medicate people who are actively dying you know we assess for discomfort on and we can tell when people are uncomfortable we look at their face you know they're
They get furrowed forehead, and you can tell when they're uncomfortable. So even when someone's actively dying, we will medicate them just to make sure. Morphine is the gold standard. So it's what we've used for decades successfully, and it's cheap. And hospice doesn't really get paid a lot of money. Hospice is paid a daily flat rate for every patient, no matter what we're doing for that person.
It's not like if you go to the ER and they give you a little basin to puke in, there's a yellow ticket on there, they stick it on your chart. And everything that you get in the ER, they have a yellow label on it and they put it on your chart and they bill you for each thing that they give you. Hospice is a flat rate. So whatever we do for our patients, we get paid the same no matter what it is.
So we are always looking for the least expensive way to do things and morphine is cheap. And it's tried and true. And it really is the gold standard for treating shortness of breath or air hunger where they can't catch their breath. It works so well. So that is typically what we use. But we use other opioids as well if we need to. Oxycodone, Dilaudid, fentanyl, methadone.
There are lots of other medications that we use. Fentanyl patches, fentanyl lollipops. Okay. Yep. Fentanyl infusions. We don't use fentanyl infusions in home hospice as much just because of the way we deliver infusions at home is usually through a subcutaneous route, which is just a little tiny catheter under the skin and fentanyl concentration is too high or too low.
And it requires more volume than a person's body can absorb with that method. So it's better for somebody that has a port, you know, like intravenous access.
If they have the ability to make the decision, then yes. It's always up to the patient. The family does not have that decision-making capability until the patient can no longer decide for themselves, and then it's whoever their legal healthcare representative is.
And it's important to make sure that you have a legal health care representative that will speak on your behalf for what you want and that you tell them what you want. Because a lot of people, if they don't know, are going to err on the side of what would they want for themselves or what do they feel is best.
And if they're afraid of a drug, morphine, fentanyl, whatever, then they're more likely to say, no, I don't want them to have that. So, you know, you really have to have conversations with your decision maker.
Not often, but sometimes. And usually when that happens, they haven't designated a health care representative. And so you've got family members. Now there's a hierarchy in my state. I don't know how all states work, but in my state, it's the spouse first if you're married. If you're not married and you have adult children, it's your adult children.
If you don't have adult children, it's your parents if they're living. If they're not living, it's your siblings. So, for example, I have a patient with five siblings. They all have to agree on whatever it is that we're going to be doing. And they may not be on the same page with each other. And that can delay care to a person because they're trying to decide, like, what are we going to do?
We're all wanting this, but Mary is wanting that. And they all have to be in agreement.
I live in a very rural county now and it's sparsely populated. I've always thought it would be fun to do that kind of home hospice nursing where I'm driving, but I'm in the countryside. I'm not stuck in traffic, traffic jams or cattle crossing the road, you know? So I do want to eventually go back to just doing kind of what we call per diem nursing. It's as needed.
Well, I have a great story about this in my book. I had a patient whose son was living with her, her adult son, and he was not accepting that she was dying. And he was not providing very good care to her. She was getting wounds. And we see wounds on patients' bed sores. It's what they used to be called, pressure ulcers. And he wasn't medicating her appropriately. She had broken hip.
And she was, every time I went to see her, she was in excruciating pain. And I would have to like, give me the medication. And he was not the legal decision maker. His sister was. But she worked in a bank. She had a high paying position, high, you know, important position and was not always there. And so the son was taking care of the mom. And he wasn't medicating her.
And so I finally had to my social worker and I had to call his sister and get her involved. And she ended up getting custody of her, taking custody of her and putting her into a nursing home. And he was going to the nursing home and badgering the nurses and getting in the way of her getting care and telling him, you can't medicate her. You can't give her morphine.
I don't want her to have morphine. And they finally kicked him out and said, you can't come back. And I was there visiting her and he showed up with a friend and was going to try to bully his way in there. And I said, you can't come in here. and they were going to call security and his friend was like, man, let's just get out of here. Let's, we don't want to cause any trouble, you know?
And he went outside and I went out, this guy was tall and I was just like, right here, looking up at this big guy. And I said, you cannot keep bullying the staff. Your mom is dying. And if you want to be with her, you have to let them take care of her. And I saw this guy just Break down in tears. It was heartbreaking, really, because he just wanted to do what he thought was right for his mom.
But he but he wasn't acting on her behalf. He's acting on his own. I hate to use the word selfishness, but it is what it is. He didn't want to lose his mom. And so I was able to get him to agree that he wouldn't interfere anymore. And she was really lingering too. She had been lingering in the nursing home for a while, past where we thought she should have died.
But I went back in and I spoke with his staff and I said, he will behave himself. He'll let you do care with her. And he went back in and he sat with her and he held her hand and she died that day with him there. So she needed for him to be there, but he wasn't able to be there as long as he was interfering with her care. So that's one that really, really sticks out in my mind.
Yeah.
Yes. Yeah. Yes. Okay. I knew you were going to go there. That's another favorite topic of mine. Yeah. Because many people, so people do seem to have control over when they die, whether it's they're waiting for something or someone, or they're waiting for someone to leave. Yeah. And more commonly, I've seen them waiting for someone to leave. And that makes the family feel so bad.
They feel so guilty. I was with him. I sat there by the bedside for the whole day. I stepped out to go pee. I came back. He was dead. And it happens so often that we do believe that people have the ability to control when they want to die.
So if somebody needs me to go out in the middle of the night, then I would, I would do that.
I think they're holding on and waiting for that time. And then when they finally leave, they're able to do it. It's amazing to see that. I have vivid memories of being at the care center. I can picture it in my mind right now, this room full of people and the lady in there dying. And one of them, the adult son, came out and said, you know... We're going to go get breakfast.
We think we need to leave for a few minutes. And the door had just shut after the last one of them left and gone just like that.
And his uncle raised him. He was very, very close to him. And he was like, I am not leaving. I want to be with him. He raised me and I want to be with him when he takes his last breath. And he was there day after day after day for like a week. And finally, we said, you know, you're probably okay to go get something to eat because he was living on the soup and cookies at the hospice care center.
I love hospice nursing, yes. Not necessarily quality assurance. I did love it. I was able to do a lot in terms of helping other colleagues of mine to learn about hospice. I did vigil volunteer training, so teaching our vigil volunteers what the dying process is like. So I've done many, many things as a quality nurse that I really loved, but I do miss the patient care. That's what I really love.
Just right up the road, there's a restaurant, you know. Go up there. You'll probably be fine. He's been lingering all this time. Sure enough... He died while his nephew was out of the building. So when he came through the door, we were watching for him. And the other nurse I was working with ran into the room and grabbed her stethoscope. And I walked him down.
And I said, you've got to come on right now. He's taking his last breaths right now. And I walked him down to the room. And she had her stethoscope on her chest. And we grabbed his hand and put his hand in his uncle's hand. And she said, he just died. And so we... We let him think that he was with them when he took his last breath, but his uncle needed for him to not be there.
It could be that. It could be that. They're private people. A lot of times people who are very private want to be alone when they die. But also I think it's protective because I've seen moms do that with their kids. They don't want their kids to be present when they die. So... I think it's protective.
I mean, we don't really know, but that's just based on what I've seen is that there are people who were very private. I had another patient who's... He was a man with two adult daughters and a second marriage wife that were there and a dog under the bed. When I got there, he transitioned right in front of me. I was just, oh, wow. I think he's going to die any minute.
I really see these very, very end-of-life signs, and I think he's going to die really soon. Each one of the women grabbed a body part One at each hand and one at the foot. And they started stroking his hand. It's okay. It's okay. We're here. It's okay. We're here. And I said, I'm just going to go step out of the room and go do some charting. Come and get me when you're ready.
So I was in the kitchen. I'm like there for 20 or 30 minutes. And I'm thinking, okay. Dang, he should be gone by now. So I went back in there. They're still, it's okay, dad, we're here. And I said, is he the kind of guy that would want you doting on him while he was alive?
And one of the daughters just looked at me, her eyes got wide and she just dropped his hand and she goes, I got to go to the bathroom. And then the other two women, same thing. They just all just made a beeline for the door. And so then it was just me and the dog was under the bed. So I walked out into the kitchen and I said, you know, sometimes we keep people here.
We don't mean to, but we keep people here. And for as long as that conversation took, one minute, two minutes, I turned around and walked back in and he was dead when I went back in the room.
Yeah. Or holding on for an event sometimes too, or holding on. And that's, That seems more deliberate. They're more awake when that's happening. I think when it's more profound is when the person is dying and you're like, what is going on? And, you know, I always say, because families will think their person who's dying is suffering if they're lingering.
So my catchphrase is lingering does not equal suffering if that person who's dying is comfortable. But it is hard on the family. The family is suffering. And death takes as long as it takes. And sometimes it takes a while. And we don't know what's going on in here when a person's dying. We don't know if they're going through life review. We just don't know.
But there comes a point when sometimes even us, the hospice professionals, are like, what is keeping them here? And we start to say, is there somebody they haven't talked to? Is there something they were waiting for? And oftentimes it's somebody that they haven't said goodbye to, you know, a sister that lives on the East Coast.
And I would get the phone and hold the phone up for the patient so that they could hear her voice. And then they would die shortly after that.
Yes.
Yeah. The moment of death is, and even leading up to it, most people are peaceful. When people come on to hospice, usually their initial reaction is fear. Like, oh my gosh, I'm for real dying right now. And you just proved it by putting me on hospice. But they will almost always work through that and get to a place of acceptance and
And then if they're scared of anything, it's not of death or what happens after death. It's either what is dying going to be like for me? Will I suffer? Will I be in pain? How is my family going to be? Those are the things that people worry about when they're dying. And so by the time they're dying, they're usually just okay with the fact that they're dying.
I think so, yeah. It's not for everybody. But that could be said of any area of nursing. I would not want to be a pediatric nurse working with little kids. You think, they're so cute, it'll be fun. But when I was doing my clinical rotation in nursing school, I had this adorable little toddler. And I needed to take her IV out. And I was like, oh, she's so cute.
I had one patient in the hospice care center who was very, very fearful until the end. And he had a lung disease. He was young. He was in his forties. He was alone. His family wasn't present. And I went in there with the hospice aid and I was standing on one side of the bed and I, I took his hand and I gave him all the medication we could possibly throw at him.
So I'm standing at one side holding his hand. She's at the other side holding his hand. And I could just see the fear on his face. And he was just struggling and struggling. And all of a sudden, he looks up and peace just washed over his face. And then he died. It was unbelievable. And I looked at the aide and I said, have you ever seen anything like that? And she said, never. Have you?
And I was like, never. I mean, it was an experience that words can't do justice. I can't even describe it adequately to see this. It was just like peace. It just, yeah. And that's the only time I've ever really seen somebody be fearful right up until their death.
Seconds. I mean, I couldn't tell. Just a few seconds. Just like long enough for us to observe this. And then death.
Terminal lucidity.
Actively dying is really when a person is usually hours to days away from death. Sometimes they can go for a week. I did have one patient that went for about three weeks. They are completely unresponsive during this time. They're not eating. They're not drinking. They are not putting out a lot in the way of excretion, urinary or fecal output. And we can't get any kind of response out of them.
There's no meaning or purpose there. in any response that they have. Eyes are almost always open or partially open, although some people will have their eyes closed during this time. And if they are open or partially open, they're going to have that fixed stare I was talking about with the lady that had the nun visitors.
looking at heaven or whatever you want to call it, like nobody's there, neck hyperextended often, mouth hanging open. This is all because of a lack of muscle control in the face as they're dying and breathing patterns changing all over the place. So they could have deep breathing, shallow, labored, like just... changing from one minute to the next, long periods of no breath at all.
We often will see people have a death rattle, which is also known as terminal secretions. So this is because as people get close to the end of life, they're not swallowing anymore. So we're swallowing our spit down all day long and we don't even realize it. But when a person's dying and they're not swallowing, that spit builds up in the airway. So when they're breathing, it makes a gurgling or a
And I go to take her IV out and she's screaming bloody murder. And I realized that I'm the devil to this child. She hates me. So I think everybody has a place in different areas of nursing, but- I would say hospice, you can't be a shrinking violet. A lot of people have a different perception of what hospice nursing is. They love to refer to us as angels, which is just not true.
but the patient is unresponsive and unaware that it's happening. And the death rattle is highly predictive. About 77% of people that have a death rattle will die within 48 hours. Also, an end-of-life fever is really common. It doesn't cause the death, it's just a... No, it's just a byproduct of the dying process. Right, right. The fever can develop in like the last 72 hours.
That's really common at the end of life too. But this is just kind of like they're in the holding pattern for however long it takes until they breathe their last breath.
Yeah, that's during the time when we really see that glazed over look in their eyes and it just doesn't appear that they're there anymore.
I mean, they can see it happening, so they know. And we've been guiding them along the way, hopefully, if we've had enough time while they've been on hospice. But I would say we're looking at a very short period of time. So when we give timeframe estimates to our family members, we give it in a timeframe. We say weeks to months, days to weeks, hours to days, minutes to hours.
And so I would say, you know, it looks like we're probably on our last minutes to hours. And I would also tell people, I'm going to give you the worst case scenario. That way, if I'm right, you're prepared. And if I'm wrong, it's a gift and would give them the estimate.
Although when they're in the actively dying phase, this is the time when the family's kind of ready for it to be over, wanting for it to be over. And that's when it becomes more about they're stressed because they're waiting for the person to die, which is anticipatory grief.
earlier on, they like to have the bigger numbers, they want to know there's more time left, because they're still appreciating that person being in their life. But once they get into that actively dying phase, and they know what's going to happen, that's when it's a little more difficult when they're kind of, I don't want to say wishing that their person would die, but waiting for that to happen.
And that feels so wrong to people to be waiting for their person to die.
There's nothing you can really do. Yeah. You're not communicating with them. They're not communicating with you. You can still talk to them. There's been studies that have shown that people who are dying can still hear up until the last moment of death. So we encourage families to talk with them, lie with them, be with them.
One of the most compassionate things I ever witnessed was when, first of all, let me preface this by saying, I don't like euphemisms. I don't like to say passed away, gone to heaven. I've seen how confusing that can be for people when they're stressed out and emotional about what's going on with their person. You know, we use the words death, dying, died. It's important to use those words.
And people will say to me, well, it's just a lot nicer to say passed away. It's just more compassionate to say passed away. And I always say, you can say that somebody died or somebody is dying really compassionately. Like, I don't walk in and say, oh, he's about to kick the bucket. There's a way to be really compassionate. And I was working with a nurse at the hospice care center.
I was a fairly new nurse. She was really experienced. And our patient transitioned and was now actively dying. And so we could see he's probably not going to live very long. People, they maintain kind of the same trajectory on this pathway. So if they transition really quickly, they usually move towards death really quickly. If it takes longer, it's kind of a slower decline.
So we saw that he was transitioning really fast and that he was going to be dying soon. And his daughter was freaking out. What's happening? What's happening? And this nurse went over to her and she was six feet tall and she looked down at this lady and took her hands in her hands and she looked into her eyes and she said, he's dying. Be with him.
And she walked her over and she sat her next to him and she put her hand in her dad's hand and she just was able to relax. And then she was able to sit with him until he died. And it was just the most compassionate thing I've ever seen. And she used the word, you know. I just took you all over the place with that. No, that's okay. We went from actively dying to anticipatory grief to euphemisms.
They like to say it's a calling. I could kind of say it might be like that. For me, it kind of was. But we have to be really strong. We're dealing with people at what is arguably the worst time in their life, but it's also the most sacred. So we have to have the ability to have the wherewithal to endure the hard parts, but also recognize the really great parts, if that makes sense.
Oh, yeah, yeah, yeah. It doesn't just happen. It changes at that point. So anticipatory grief... The way I've heard it described that I really like is it's like being forced to watch a whole movie when you know that the ending is bad. And so when it comes to hospice, the movie is your person dying and the ending is their death. And so you're waiting for this thing to happen.
Because I've had patients who came on to hospice who didn't know that they were dying. I don't like euphemisms. I don't like to say passed away, gone to heaven. I've seen how confusing that can be for people. We use the words death, dying, died. I prefer now to just live my life and not worry about death and dying. So in a way, working with people who were dying taught me more about living.
And after a while, when that person is then no longer responsive and you feel like they're suffering, again, because they're lingering, that's when you start to feel like, I wish this would be over. And that's when anticipatory grief really kicks in at its highest moment right there, because that's when you are...
you're not only grieving the impending loss of your person, you're feeling the guilt over wishing this would be over, basically wishing their life away. So it's really the peak of anticipatory grief. Anticipatory grief can also be considered practice grieving to help you cope with the death after they've died, although that's a whole different kind of grief.
They died or they're dying?
Well, for one thing, as a healthcare professional, we have to be really clear about what we're communicating to people. Like I said, they're stressed, they're emotional, we don't want to be... You know, you don't want to say something like, we've lost him. What does that mean? Where did he go? We want to be really clear.
If it's a family member wanting to talk about that their person passed away, then, you know, that's fine. You're going to say whatever you want to say for yourself to cope. But really, if I said to you, oh, I heard your dad passed away, to me, it's almost like... we're done now. We're just going to pass over that conversation. We're going to brush it off. Sorry that happened.
If I said to you, I heard your dad died. I am so sorry. I have just given you the opportunity to approach a really difficult subject because you know, I'm not going to shy away from it by using a euphemism. I'm calling it what it is. So it really lets people know that I'm here for you and I'll talk to you about this. I'm ready to go there with you.
Yeah, I don't know. I don't know what that would be. And interestingly, Barbara Carnes, who is a hospice pioneer who's written a ton of literature about death and dying, says that there's no such thing as dying. We're born and then we die and everything in between is life. It's living. And it's true. I mean, it really is. But I don't know of any other way to describe approaching death than dying.
that would be universally understood.
Yeah. And if you think about it too, it doesn't matter what the word is, it still is what it is. And so I think it's important to use the terms that are more generally known worldwide, like died, dying, death, dead, than to use other words. Because it doesn't change what it was. It still is what it is. They're still dying. They're still dead.
So calling it something else doesn't change what happened. But people, again, are so afraid to talk about death and dying, they don't even want to use those words.
Yeah, I could see that for people like us who believe that there is something more, but then there are lots of people who don't. They do think dead is the final thing. Right, right. And I don't think passed away is necessarily any better. Like passed away to where, you know? I would almost think transitioning is good when they're transitioning.
Moving on, moved on, which then again begs the question, where are they moving on to? But yeah, I don't think there's other terminology that's better for, generally speaking, everybody that could really speak to what it is. I mean, we know that there's death, people die, and it's the end of their body. You know, and then we think there's something beyond that.
So, I don't know.
Yeah. And I think people, there are people who speak in that way, psychic mediums, religious people. But in terms of being a hospice nurse and what's within my scope, you know, it's what it is. It's death. It's the person has clinically died. And beyond what happens there...
That's open to your belief and your interpretation, and it's not for me to say something that's going to allude to that, because you might be somebody who doesn't believe in that, or have a different belief in that, because you might be a Christian who believes it's heaven, and if I said something that alludes to something other than heaven, like reincarnation, that would be offensive. Right.
So as far as the clinical presentation of it, and what I communicate, it's gotta be death and dying, because that's where we've landed with this. But from the philosophical point of view, then yeah, I get exactly what you're saying, that death isn't necessarily the final thing.
And so then that's why I say if a person wants to say that their person went to heaven or they passed away, then that's perfectly fine. But if you're trying to work in this profession or provide comfort to somebody else, being able to acknowledge that this happened, it's just an easier way to let them know that you're not afraid to talk about that taboo topic of death.
I don't know if I would say that I have ever felt trauma. And I don't know that I would say my colleagues do either. The nurses that I've known that had trauma that were experiencing trauma didn't last in hospice. They left. I remember one distinctly that I worked with at the hospice care center who just cried all the time. And I just thought, why are you here if you hate it so much?
You know, I think people would express regrets more if they were speaking to the chaplain. As a nurse, I've picked up things along the way, but most of the things that people regret are going to be what you expect. They wish they wouldn't have worked so much. They wish they would have stayed in better communication with their family. They wish they would have...
enjoyed food instead of dieting, that kind of thing can come out in conversation with people who are dying. But a lot of time, most of the time, people who are dying are spending less time regretful and more time trying to experience life for as long as they have it left.
So they're trying to appreciate the time that they have with their family now, rather than mourning the fact that they didn't have more time with their family before.
Yeah. Because most people who are dying in natural death will go through that dying process where they are transitioning and then getting into the actively dying stage. And we don't know what words they say along the way are their last words. There are cases where somebody will say last words and then die. My dad did that. He said to the nurse, I'm about ready to hang it up. And then he died.
Those were his last words. I think it was the one that died. I don't want to kill somebody off that's not dead yet. Jeff Bezos is still alive, right?
Who's the other ones? The famous, the Apple guy.
Steve Jobs. Yeah. Famously said, it's beautiful or something like that. It's beautiful. It's beautiful. And then died after that. But most of the time, we don't recognize that somebody is saying their last words until after they've said them. Later on down the road, they've died and we realize that's what they said.
But if we're not writing down every single thing they say along the way, we likely don't even remember what they said. So yeah, people don't say last words and then close their eyes and die very often. It does happen. Happened with my dad. And it's happened with a couple of patients that I've had too. But for the most part, they slip into unresponsiveness and then they die after a short time.
So I wasn't present when the patient that I'm thinking of had his last words, but he was estranged from his son. And this is a patient that was probably one of the most trying patients I've ever had in my career. Long story about him. It's all in my book.
he ended up in a hospice care center and was lingering for quite some time, way past when he should have been still alive, but he was not actively dying. He was still very much transitioning and alive. And his son came to visit him and forgave him for not being more present in his life. And he said, thank you. Now I can go. And he closed his eyes and died. Wow. Yeah. So that was pretty amazing.
There's words, but we don't know which ones are the last ones.
People talk and then they're not talking anymore.
So like I said, unless you've written everything down, you're not going to be able to look back at that and go, oh, those were the last words. It's really the ones that we remember as last words are the ones where they say the words and then they die. which doesn't happen very often.
Oh, wow. Wow. That's right. Yeah. Yeah. Yeah. Oh, wow. Wow.
Yeah.
Yeah.
And she finally quit. And I saw her about a year later in the hospital. And she looked fantastic. And she was working in a dialysis department. And she said, I love it. It's the best job ever. I'm so happy that I did this. And I was like, okay, you know, it's just, it's not for everybody. I think if it's, if it's too trauma causing, then you don't last, you burn out.
Yes.
Well, they think that we intentionally kill our patients.
And why they think that makes sense, I really don't know because when our patients die, we don't get paid anymore.
They think that we make more money the more patients that we have that die faster. Some people have even gone as far as to say we get a bonus when they die, which is absolutely not true. Hospice doesn't make a lot of money, as I explained before. It's a daily rate. It doesn't matter what services we're providing. It's the same for everybody. And when they die, that payment stops.
We don't get paid anymore. So, yeah, there is a group called Murdered by Hospice. And these are primarily people who had no decision making capacity for their person who was on hospice. They were not the legal healthcare representative.
Somebody else, either the person who was dying made the decision to go on hospice or another person that they had legally designated to be their healthcare representative made the decision for them to go on hospice. So these are the people that had no control over their person going on hospice and felt that...
hospice intentionally killed whoever it was, their mom, their dad, their husband, their wife, whoever. And so they hate hospice in general because of their experience with it. And because I represent hospice, they come after me.
Yeah. Murdered by hospice Facebook group.
I do not know how many members. But it's all people who have had a bad experience with hospice and are... And are advocating for hospice to be done away with and trying to educate about how hospice is terrible and you should never put your person on hospice. And some of them are so seemingly delusional, it's like they think that their people would still be alive had they not gone on hospice.
And they'll go into the comment section and they'll actually describe situations that I, as a hospice nurse, look at and go, oh, wow, that person is dying and that's appropriate care that they're receiving. And they'll all be saying, no, they shouldn't be doing this. They're going to cause her to death by giving her the morphine and, you know. It's like, no, that person is dying.
You know, the commenter has said she's got end-stage liver failure, and now they're giving her whatever medication. That's appropriate care. And then you've got all these yo-yos in the comments section saying, no, it's stealth euthanasia. They're going to kill her off. Yeah. You know, we do palliative sedation in hospice. So terminal agitation is something we haven't really talked about a lot.
That can happen during the transition phase when somebody gets extremely agitated. You cannot reason with them. They can't tell you what's wrong. They're completely incoherent. They're trying to get up, trying to get up, restless, sometimes even combative. It's horrible. It's horrible for the person. It's horrible for the family. And we try to medicate them for it with a sedative.
And eventually, if we are not able to calm them down enough, we have to do palliative sedation, which is an agreement that's made with the family. We don't just go in there and put people to sleep. We make an informed consent with the family.
Right, exactly. It's for symptom management. That is what it's for. It's not to end their life. It's intended to sedate them until the time of their natural death. This is what we do so that they can be comfortable and calm until their death. It's a horrible thing for them to experience. So we do this, not very often, but we do do this sometimes.
And they call it stealth euthanasia, that we are secretly killing these people when really they're dying. And that's why this is happening, this terminal agitation.
Exactly. They died because they're dying. Yeah, that's one of my catchphrases. They didn't die because we gave them morphine. They didn't die because we starved them to death, which is another misconception. We don't starve people. I love giving people the food that they want at the end of their life. I did it for my dad.
We gave him a huge plate of every kind of meat there is because my dad was from Texas and he loved that kind of stuff. I love that, but people who are dying are not hungry. Their body is dying. It's going through a dying process, a shutting down process. And it's going to be an energy conservation so that it can complete that process.
And as a result of that, they're not hungry anymore because digestion is the most energy consuming process in our body. So they're not hungry. They don't need the nutrition. They don't need the calories. So we say, give people what they want. If that's only just a bite of something that they enjoy, that's fine. But we don't force them to eat. We're not going to coerce them.
We don't condone feeding a person to death, like is what happens in nursing homes with dementia patients. They get fed a more pureed and pureed diet until they're on liquids and you're giving them teaspoons of Ensure to keep them alive, we allow their body to dictate what they need.
But because we're educating about don't force them to eat, we don't tube feed people, we allow their body to die a natural death, they think that we starve people to death.
Yeah, and I would say, like when you're talking about first responders and the trauma they're experiencing, that is very different than being a hospice nurse. I know my patients are going to die. That's the expectation. When you're a first responder, you're trying to save someone's life, probably somebody that's
Sure. But there's an amount of Tylenol that's lethal.
So it depends on the person. There's no ceiling dose for morphine, meaning that a person can tolerate as much as they can tolerate. So we can go as high as they need without ending their life as long as they're tolerating it. We start people off on low doses of morphine. People who haven't been on a lot of opioids usually start at about five milligrams of morphine.
That is less potent than a Percocet. People don't have a problem with Percocet, but they, for some reason, have this huge fear around morphine. Now, if somebody has cancer, they've probably already been on morphine or oxycodone, Oxycontin, Dilaudid. And so we're going to be giving them more medication as their pain increases. They are more opioid tolerant.
But somebody who hasn't really been on a lot of opioids, we start them at a very, very small dose. And then we will increase incrementally as they need it. We don't just blast people with an overdose of morphine. You can cause someone's death if you are going to give them 20 milligrams of morphine or 30 milligrams of morphine when they've never had any. That can cause their death.
But as you are ramping up the morphine, as their body adjusts to it, like I said, there's no ceiling dose. We can give as much as they need to have morphine. over time as they are getting more accustomed to the doses of morphine.
So people, they'll either respond to it by having their symptoms relieved or they won't. And then we'll need to give them more. And we're usually keeping track of that too. So we will usually start with an as needed. So it might be five milligrams of morphine every four hours as needed. And then if that's not working, it might be every two hours. And then it might be every one hour.
And then it might be every 15 minutes until we're getting their pain managed. And then after we've given a certain amount, it depends on how long the person is expected to live. If it's somebody that's going to live for a while, then we're going to try to convert them to a long-acting morphine. So we...
look at how much morphine they've had, and we calculate how much that is over 24 hours, and then we would give it to them in a long acting dose, or we might start an infusion on them so that they're getting continuous pain relief. We never want to try to chase after pain. We want to get on top of it and we want to stay on top of it.
So oftentimes people will say they were giving morphine even when she didn't need it anymore. She wasn't in pain anymore. Why wasn't she in pain? Because we were giving her morphine. So we still need to be giving that drug so that they can be continuing to have their symptoms.
been in a terrible accident, you know, and you're seeing some pretty horrific things, I would imagine. And even first responders that are responding to just a healthcare crisis, you know, their job is to save that person's life. And if they are unable to do that, that in and of itself can be trauma inducing, because again, That's what they're trained to do is to save them.
Near as I can tell when I read their comments, which isn't very often just for entertainment once in a while or to get myself spun up unnecessarily. I will go in their comment section. But yeah, it appears that these people did not have the decision making. People can revoke hospice. You don't have to be on hospice. You can at any time say, I don't want hospice.
So if you are the decision maker and your person is no longer decisional and they're on hospice and you think that hospice is trying to kill them, then you can revoke the benefit. You can say, you know what? I don't want this anymore. So when they're saying this, I'm always thinking, why? Well, if you were the decision maker, then why didn't you do that?
And if you weren't the decision maker, there's a reason why you weren't the decision maker, because you weren't trusted with that decision. You would have made the wrong choice for your person, causing them to suffer at the end of their life.
Whenever they need it. Whenever they need it. Yeah, yeah. And usually it's, it's usually something that's given more towards the end of life.
But again, with cancer patients, they're coming to us on opioids already. And so we're just going along with what they're already on and giving them more as they need more because their pain is going to increase as their cancer gets worse before they die.
Well, from the outside, it would create this. Help me understand what your concerns are about your person getting these medications so that we can talk more about this. From the inside, it's like, oh, my fucking God, not again.
I just want to throttle you. But no, we'll compassionately explain to them that we use morphine safely. We're not worried about addiction. There's no time for that. And we just want to make them be comfortable until the end of their life. And also pointing out what the person looks like to them too. Like, look at them. Do they look comfortable? They look uncomfortable to me. Do you see this?
You see this? You see how restless they are? That tells us that they're uncomfortable. Or conversely, yes, we've been giving the morphine and look how peaceful she is. She's comfortable now. Do you remember what she looked like before? Do you remember that she was moaning and every time we turned her, she was stiff? Now she's relaxed. It's working.
So we don't want to stop it because we don't want to go backwards and have to try to get on top of that pain again.
Yeah. I'm definitely their scapegoat. I mean, I've had people... Recently, somebody who in a comment said, you gave my mom too much morphine and she died and you're a killer. And I was like, I didn't even know your mom. I don't know you. I didn't know your mom. She wasn't my patient. I don't know what you're talking about, you know, and go after my license. They want to find out where I work.
Their outcome, their good outcome is for that person to live. Our good outcome is for the person to die comfortably, peacefully, and for their family to be prepared for that and not experience... suffering through watching that unfold.
uh, the Facebook comment section is, is rich for really hateful things. People are pretty hateful on Facebook and we'll, and we'll say this, she doesn't deserve to be a nurse. She shouldn't be a nurse. What, you know, she's making fun of death. She makes fun of her patients and, you know, I'm just, I'm just their, their scapegoat. Yeah.
Yeah, I mean, there's a lot to be said for levity when it comes to grief. And the reason why I like to use humor when I'm doing these videos that I make is because I've been with families who use humor for coping, and I've seen how really effective that it is. It's a great coping tool.
Yeah. which is how I am too. And the people that are on Facebook or the other social media platforms who hate on me for making fun of death or dying don't realize that's social media. And they'll say things to me like, I can't believe you treat a patient like that. I'm not at the bedside of a patient. I'm on TikTok. This is not how I am when I am
With people, for real, I am very compassionate and I use humor appropriately when I know that that is appropriate to use with this particular patient and or their family. You know, I pick my spots for sure. I'm a professional. So it's insulting for them to say stuff like that to me, but I also just know that haters gonna hate, you know, and that is what it is.
I know the situation you're, or the... story on the Murdered by Hospice Facebook group you're talking about. I saw that as well. And the reason why the nurses would ask somebody to leave their uncle's room is because they're going to do personal care with him and they want to preserve his dignity. There's nothing nefarious that's happening in there.
They didn't give him a dose of something to kill him right away when you left the room. They're just trying to protect his dignity. And That's all there is to it. But you wouldn't be able to go into that comment section and respond to them by saying that because they would shut you down. They're not really wanting to hear that. They're just in their grief so beyond deep.
And they're just really enmeshed in their grief. It's become their whole personality to hate. And so I just ignore it most of the time.
It's two completely different things. Right, right, right. So euthanasia is legal in Canada. It's what we do to our pets, actually, in the US. And that is when a medical professional is administering a medication to end the life of a being. And that's how they do their medical aid in dying in Canada. A medical professional, a doctor, will administer the medication.
In the US, euthanasia is not legal. Medical aid in dying is legal in 10 states and the District of Columbia. And that is very, very strict guidelines for this. You have to have a terminal condition with a no question about it, six months of life expectancy or less to be able to qualify. There's a waiting period. You have to be determined to be of sound mind.
Nobody else can make the decision for you. You have to make it for yourself. You have to self-administer the medication. Therein lies the difference. A medical professional is not giving you the drug. You are taking it yourself. A family member or a volunteer can mix up the medication and hand it to you, but you have to consume it yourself.
Right. And I would wonder too, and I don't know any statistics, but with first responders, how many of their patients actually die and how many of them survive? What's the ratio there? For us, we do have people that survive hospice, but it's a pretty low number. And almost all of them are still terminally ill. They're going to come back to us.
Ten states and the District of Columbia. I don't know all the states. I know some of them, Washington, Oregon, California, Montana, Vermont. I can't remember the rest of them.
Yeah, it's trying to be growing. It's in legislation in other states all the time. They're trying to push it through in other states, but it doesn't really. Oh, yeah, Colorado, Hawaii, Maine, Montana, New Jersey.
Up until last year, you had to be a resident of the state. But last year, Oregon and Vermont passed laws to where you can come into the state and do it there. You don't have to be a resident. Because it's limiting for people who don't live in those states. They have no other resources. And when we don't allow this, people take matters into their own hands.
If it's not legal or it's not accessible... And it could be not accessible for a number of reasons, even where it's legal. It might be because the drug for a while cost too much in the state of Washington. It has now come down. They were charging $3,000 for it, so it wasn't accessible to everybody. Or it may not feel accessible to the person because their family members are opposing it. And
They want to do it, but their family members are against it. And so they will often take matters into their own hands. And I personally know of patients who have died by suicide in much more horrific and traumatic ways than it would have been had they done medical aid in dying, which is a peaceful death. So I firmly believe it should be federally legal.
Oh, I think Switzerland. Switzerland. Yeah. Right. And I think maybe some other European countries.
Yeah.
Yeah. They have the Sarco pod in Switzerland now, which is that pod that people can get into. Right. I think it puts carbon dioxide. Nitrogen. Yes. Yeah.
I actually don't know. It's a number of drugs that a pharmacist came up with, and they're dissolved into a liquid, and they have to drink them. Or they could put it in a PEG tube, a stomach feeding tube. Or a rectal catheter is a new way that they're starting to do it now for people who can't swallow.
So previously, if you couldn't swallow or you had a lot of vomiting with your disease, you couldn't do it because you would not be able to consume the drug. But now there are different ways of them being able to self-administer it. And... Supposedly, it burns a lot when you drink it. It's very burning. Oh, look. Okay. Midazolam. So that's benzodiazepine. That's actually also known as Versed.
And that drug is what we use for palliative sedation, midazolam. Propofol is another sedative that's used often. So rocuronium. So that's something that we do not use in hospice ever. But yeah, it's a combination of drugs.
Like your dad.
And prior to taking this cocktail, and I don't know if this is like what every state uses. I know our state was using a different combination. Like I said, it was $3,000 and then another $3,000. Oh, that's Canada. Oh, that's Canada. Oh, okay. So they came up with a different combination of drugs.
Right. So... our ratio of death is much higher. And it is, like I said, it's the expected outcome. And we accept that. We accept that's going to happen. And so it's easier for us to not be traumatized when that happens. And there are things that can happen with the human body where you're like, whoa, I didn't know that could happen.
I'm not sure how widely they publicize it just because they don't want people maybe making it on their own. But, but typically what happens is first they're going to take a sedative, like a Valium at a van prior to like a couple hours prior to doing the end of life drugs. And then they have to drink the end of life drugs. And I guess it burns a lot when they're drinking it.
So that's kind of a bummer, but yeah, And then the dying process can last anywhere from minutes to hours to a day. So it doesn't always kill them right away. Okay.
No. That would kind of defeat the purpose. Yeah, exactly. No, it's a peaceful death. It's a peaceful experience for the family to watch. Yeah, I haven't personally seen it, but I know many people who have. I've seen it in a documentary that I was able to screen, but yeah, very peaceful way to go.
And much better than the alternative if somebody is really convinced that they are going to take matters into their own hands. We've had murder-suicides. Well, in Florida, you had that woman that killed her husband in the hospital. Wasn't that in Florida?
Yeah, yeah. No, I'm pretty sure it was Florida. She actually was in the news again because she was just recently convicted. And I think they're giving her some time in jail, but they had a death pact and she went in with a gun and killed her husband.
Yeah.
Yeah. I might be wrong that it was in Florida, but I'm pretty sure that it was. Flora, yeah, that's... Yeah, she just got sentenced.
Oh, she was 76, okay. And I get why she wanted to do that, but I certainly would never condone something like that. She was threatening the staff. There was a standoff. It was traumatizing to the nurses and the doctors who worked there.
Really horrible. But those are the desperate measures that people will resort to if they don't have an alternative.
I don't think so. I don't know. Yeah.
Feels like we did. Yeah.
Infamous. For 15 minutes.
Yeah, so my second husband of 10 years and I decided to get divorced, and I needed to have a career, as I was saying before. I decided to go to nursing school, and he was in the military. He was enlisted. So we didn't really qualify for financial aid, nor did we really make enough money to pay for college. And I heard about a woman who had started a website to raise money for her credit card debt.
And mind you, this was 20, 21, 22 years ago. This is before Facebook. It's before GoFundMe, before any of that. And I thought, well, if she's getting money for doing that, my cause is much nobler. So I started a website to raise money for nursing school, and I called it Help Me Leave My Husband. And it became kind of world known. At that time, 100,000 hits on a website was a big deal.
And you could consider that a little bit traumatizing to know that that's possible to have tumors that are coming out of a person's body leaking fluids everywhere or a catastrophic bleed out can be, you know, pretty traumatic. But they're not as common, you know, in the whole scheme of things.
It was a lot. And, um, and so I, I did a little, um, couple of television shows, Fox national news, a lot of local TV shows, uh, the view the other half. Oh my God.
Yes. That's, uh,
Yeah. Yeah, I had the recordings on videotape, and I just recently, my son does IT, and he helped me, and I got the cable to hook his VCR up to my computer so I could download these and put them on my TikTok.
But yeah, that's me 22 years ago. That's cool.
$2,200, $2,300, something like that. I don't even remember. And it became more about the... the journey instead of the money because I was, I was, it wasn't just asking people for money. I was blogging about my life. I was blogging about going through school. I had a mailbag where people wrote me, um, letters and I would answer the nasty ones.
Like I do answer the nasty Tik TOK comments, you know, very satirically, um, and often putting them in their place. And it was funny and people liked it. And I said, if you like it, send me a buck or two. I was fully open or on page one about why I was doing it, that my husband was a great guy, that we just didn't get along anymore. This wasn't about me wanting to try to stick it to him.
And I think what was misleading was that the picture on the website was me with my hands tied behind my back. So it was a view of the backside of me with my hands tied behind my back. So I wasn't showing my face. So people would jump to the conclusion that I was implying that my husband was abusing me, which he wasn't. And I said that right off the go.
First of all, my husband is not abusive, but people wouldn't read that. They would just go ahead and start in with the hate. But it kept me accountable and it kept me focused and on track to be able to accomplish my goal of going through nursing school just so I could say, see, I did it.
Yeah, so if you use GoFundMe at all, you're welcome.
It was a movement. It was Karen first and then me and then a whole bunch of other people started doing it for all kinds of different reasons. And then after that, and they called it Internet Hand Handling or Cyber Begging.
And then it was still a while, though, before GoFundMe, because GoFundMe, I don't think, still came out until maybe, I don't know when it came out. I'm sure Ryan will pull it up on the screen. Ryan will tell us in a second. But, you know, because this was in 2000, well, I was 40, so I want to say it was in 2002, around that time, 2001, 2002.
And GoFundMe came around in 2010, so it still took a while before GoFundMe. PayPal was... alive back then. Cause that's what I used. I had a PayPal link on my website for people to send me a buck or two.
So it's called Influencing Death, Reframing Dying for Better Living, and it's available wherever books are sold online. There's also an audio version that's on Audible or audiobooks, and I narrated it myself. I started writing stories back when I was first a hospice nurse.
So what happened was a few years before TikTok, before I discovered TikTok, I was frustrated with how death was being portrayed on media. I just thought it was phony and misleading and I'm passionate about educating and normalizing it. And so I found this website that Amazon had where you could write a screenplay and they would select screenplays to produce.
amateurs and so i started taking my stories and putting them into this website and making a screenplay out of it and then shortly after that they decided they weren't going to do that anymore so it went away so i shelved it for a while and then i got on tick tock and people kept telling me that i should write a book I don't just talk about hospice and death and dying on my platforms.
I talk about my sober journey, my life. I'm very open about my former drug addiction, my former time in jail, giving up my son, all of that. And I thought, you know what? Once I had 100,000 followers, I thought maybe I should write a book. People seem to be interested and it could be inspiring to others.
So it's a memoir and it's really talking about my earlier life and what led me to be a hospice nurse and juxtaposed with caring for the dying people and how that has impacted me.
Being a hospice nurse?
Well, the biggest impact to me has been now having a belief that there is life after death. That was the biggest for me, which helped to resolve my death anxiety. Just getting to that place of acceptance is probably the second biggest thing. And understanding that accepting that we're all going to die someday is the best way to not be afraid of it. Because you can just...
put it on the shelf and not worry about it anymore. You don't have any control over it. So it's, you know, it's just something that's going to happen. And I prefer now to just live my life and not worry about death and dying. So in a way, working with people who were dying taught me more about living.
So I have a website, hospicenursepenny.com, and there are links to wherever you can purchase my book. There are links to all my social media platforms. I'm on Instagram, TikTok, Facebook, and YouTube, at Hospice Nurse Penny everywhere. There are also resources, some links to resources for people who have need for resources for hospice.
There's an interview guide for if you're looking for a hospice, questions to ask. So yeah, I've got a lot of information on that website.
Yep.
Oh, gosh, you've done so much for me already, just bringing me down to your beautiful state. Thank you so much. You're very welcome. Oh, cool. Oh, nice.
Oh, Eckhart Tolle.
A friend of mine has AIDS. He's actually survived AIDS. Okay. Back in the 80s when nobody survived AIDS is when he got HIV. Okay. And then full-blown AIDS and thought that he would not live to see our 20th reunion. And now our 45th reunion is coming up because of the new drugs that they found. But he was really big on Eckhart Tolle. Okay. Yeah.
series of tapes that I was listening to for a while way back when. So yeah, definitely be interested to read that. Thank you so much.
Yeah, me too.
So it happened during COVID.
you know, we had the shutdown, but my husband and I were still working, but every, everything else was shut down. The grocery stores, the restaurants, the YMCA, where I was working out, he worked nights, I worked days. And so I was super bored. And I heard about Tik TOK and I got on there and totally got sucked in scrolling through.
And, uh, you know, it was kind of playing around with some of the trends, trying to learn how to shuffle dance, never dead spoiler alert. Uh, uh, And then one day, I don't know why, but I decided to post a story. And the story that I told was about one of my earlier experiences working in hospice when I had a patient who was an elderly woman and her daughter was a nun.
And so she had a lot of nuns visiting her all the time. And one evening, the last visitor was in the room with her and she came out to the nurse's station and she said, she's gone. And I said, oh, and I stood up and I grabbed my stethoscope and she said, no, no, no. Her body is still here doing the work of dying, but her spirit has left. You can see it in her eyes. And I was like, what?
Wow, that's really fascinating. I'm going to have to check that out. So as soon as she left, I walked into the room and I looked at this woman and I could see what she was talking about. Her neck was hyperextended, which is really common at the end of life. Mouth was open. Almost always people die with their mouth open.
And her eyes were open, which people usually die with their eyes open or partially open. And they were just like she had this fixed gaze, right? And the best way I can describe it is the lights are on, but nobody's there. And I just, what she said just really resonated with me. Like, I get it. Her body is still here. It's still doing this work of dying.
But her spirit, her essence, her soul, whatever you want to call it, has left. It's not in her body anymore. Is it in the room? Maybe. I don't know. Is it just gone to wherever we go after this? I don't know. But you could really sense that she was out of her body. So that video gained a lot of views. It went viral for the time.