On this week’s episode of the BLBD podcast, Hospice Nurse Julie delves into details about the active dying phase, so that we can all *learn more* and *be better prepared* when someone we love is at the end of their life. Her goal with her social media posts and interviews such as this one? To de-mystify dying.

Julie says: “As far as actively dying goes, that’s what I love to show in my videos, because if you are not used to seeing someone actively dying – a few hours to a few days before death – it can look scary, and it can look like they are not okay because you’re not used to seeing them look  like that.”

“We know – I know, as a hospice nurse, who’s used to seeing a body dying – that this is very normal:

• Their face is going to look different
• Eyes are open, not blinking
• Not making eye contact
• Mouths are usually open – all our muscles are relaxing
• Tongue might be doing weird things
• Breathing changes
• Usually not eating or drinking
• Symptoms can also be coming from disease
• Unconscious for the most part
• Secretions that might look or sound different”

All of this is normal – we just don’t know it, so we can find it scary.

Visit Julie’s website at: hospicenursejulie.com

Transcription:

Diane Hullet: Hi, I am Diane Hullet and welcome to the Best Life Best Death podcast. Today I’m revisiting an old friend, hospice nurse, Julie and Julie and I first recorded a session sometime ago, and I’m so excited to have her back because the lot’s happened. In that time period, so Julie is a, she started out as a TikTok star.

She’s got 1.1 million followers on TikTok. In fact, on hospice talk views, there are 600 million views and many of them belong to Real life nurse Julie McFadden. She’s also on YouTube with 200,000 followers. 184,000 followers on Instagram and 300,000 on Facebook. So you can see she’s a real social media phenomenon and a genuine working hospice nurse in the Los Angeles area.

So I’m excited to have Julie McFadden back. So, hi Julie. Hi, 

Julie McFadden: Diane. So, so nice to see you again. I knows. Full circle. I feel like 

Diane Hullet: it’s so full circle. We first talked back in like November. Of, oh gosh, I’m gonna forget the date. 

Julie McFadden: It’s 20, 20, 21, right. Or 20. 

Diane Hullet: I think it was 2021. Yeah. Yeah. And, um, you were like one of the first sort of big name people I reached out to.

I saw an article in like u s A today, and my husband’s like, you should, you should reach out to her. And in some ways you were just really starting this journey. I mean, you’ve done so much in the 18 months since. It’s really cool to see. Oh my gosh, thank you. So for people who are listening and don’t know who you are, um, tell us a little about Hospice Nurse Julie.

How did you start doing this? 

Julie McFadden: So I am a hospice nurse. I am an actual nurse, uh, a hospice and palliative care nurse, and I still do that. And, um, yeah, like you said, I think it’s, um, been like a year and a half or 18 months, whatever you said, uh, where I started Hospice Nurse Julie on TikTok, where I was just sort of educating about death and dying and saying the, you know, the five main things I wanted most people to know, not really knowing.

Was going to come of that, and it’s just turned into it. It kind of got a mind of its own and, and now I educate about death and dying on, on the internet, on all platforms, and it’s been really cool. And, and I am still a nurse, so it’s like I haven’t, I still am nursing as a hospice and palliative care nurse and educating about death and dying on the.

So amazing. It’s been great. 

Diane Hullet: So amazing. Like, yeah. YouTube, you’ve got, I think, really important videos on YouTube and TikTok. If someone’s not familiar with TikTok, how long are those little snippets? 

Julie McFadden: Yeah, tos are usually a minute to three minutes. Three minutes is kind of the longest I usually do, but usually one minute to three minutes, and then I try to do longer ones on.

Yeah, I, I, I try to do longer ones on YouTube. Um, and then I’m on Facebook and, you know, I just. Instagram to me is the most fun cuz you can do the stories where you kind of like talk into things and you get to know my personality a little more. Um, so I find that the most fun. But all of the platforms have been really great.

It’s been really great to see people really wanting to learn about death and dying. 

Diane Hullet: Yeah. Yeah. I think yours is one of the voices that has really made it just really normal. Like you’re flipping through Instagram and there’s something about death and dying right in there with cute animal videos and, you know, whatever you’re friends get on the weekend.

Like, you just get this whole mix. And I, I can’t help thinking that the social media platforms are bringing all this to younger people, wouldn’t you guess? Yeah. 

Julie McFadden: Yeah. And um, Yeah, I mean just I started out cause I thought there were so many interesting facts about death and dying that most people didn’t know.

And the coolest, one of the coolest things that I really wasn’t expecting is young people telling me that. The videos and the education are helping him fear death less. So there is a lot of death anxiety that I wasn’t really even familiar with. I didn’t realize that this was like a thing. And um, and the education seems to help with that.

So, um, what you’re doing, what I’m doing, what hospice nurse Penny is doing, what all these people on the internet are doing seem to be helping. Um, you know, I was trying to help people actually learn about death and dying, which is great, but I didn’t realize like younger people who have. A real death fear or death anxiety, it’s been helping them too, so, yeah.

Diane Hullet: Yeah. I, I think that’s so neat. You talk, so in your videos, you talk really directly and succinctly about, you know, some of the things that happened at the end of life that you just feel like, wouldn’t it be great if people just knew this and weren’t so surprised by it, or shocked by it and, and of Chris, we can’t generalize completely because every death is.

Whether it’s from disease or accident or old age or frailty or whatever it happens to be from is gonna impact it, but, but you say there are like five things you wanted to convey or you know, you talk about sometimes broad categories like changes in sleeping or changes in eating. Let’s just share some of your knowledge about that.

Julie McFadden: Yeah. The thing that most amazed me when I became a hospice nurse, like over the year of kind of the learning that you get when you change, uh, areas as a nurse, right? I was an ICU nurse where we were like constantly doing things to keep people alive, so then to move to hospice and to see how the body just naturally knows how to die and we can help with symptoms of the disease that they’re dying from, but like the dying process.

The body’s built to do it. Just like if a woman chooses to have a baby, right? Uh, for the most part, the body knows how to have the baby and the baby knows how to be birthed for the most part, right? That is what I found death to be showing me, and it was like so fascinating to me that I had to tell people.

So what did I see? I saw that, um, the body makes you naturally more tired, so you are having this like slow, gradual. Sleepiness, which if you don’t resist it, uh, will help you. Right? And you have the slow, gradual, uh, less need for food. Slow, gradual, ne less need for, um, Water, so for thirst. Um, and when that stuff starts happening, like your cal the, your calcium levels start going up.

So you are easily more tired and you want to sleep more. Um, when you truly, like, when you truly are not eating and drinking anymore, like during the actively dying phase, which is a few hours to a few days before death, many family members think. Oh my God, they’re not eating and drinking. They’re starving to death.

That has to be so awful. You know? And that’s not the case. So your body, uh, is built to do that and is making yourself do that because that noses it’s dying. And it goes into, again, this is a general, this is generally speaking, not everybody, but a lot of times the body can go into something we call ketosis, which is not like the diet.

The diet. You’re still eating and maintaining things, but you’re in ketosis. This is because you truly are not eating and drinking. So you go into keto. And it, it decreases pain, it increases euphoria. It, um, gives you an overall feeling of like, goodness, right? You just feel like better. It’s like a natural anesthetic.

And I say these things because that’s miraculous to me. I mean, yes, we’re dying, but like the body is doing it to help to, and we feel so, we feel okay about it. Um, So that’s why we wanna have a dr. That’s another fact that I always like talking about is like a dry death being dehydrated. Uh, because the more dehydrated you are, the more, the more you have this ketosis thing happening, so you actually feel better.

So one of my videos, I called it, um, Your body releases death, endorphins. And I got a lot of slack for that cuz everyone’s like, death, endorphins. What word? Like prove that, where do you see it? And that’s true. I was like, shit, I can’t really prove it. That’s just what a, that’s what a hospice doctor used to say to me.

Anyway, I did do some investigating and that’s where the whole ketosis thing comes in. Where like, it, it releases this like euphoria. It makes you feel euphoric anyway. 

So 

Diane Hullet: like our, our desire to be like, oh, here’s a glass, here’s a straw. Drink it. Or like that might have been fine two weeks ago, but in that actively dying phase, and maybe you can talk about what kind of signs you see that are the actively dying phase in a slower Dr.

Death. Of course. 

Julie McFadden: Yes. And just f y i. If someone’s asking for food or asking for water. By all means, give them food and water, and a dry mouth is not comfortable, right? So like you can still do sponges and like make, so their tongue’s not dry, things like that. So like, there are, it’s not like, don’t give them water, you know, if they’re asking and keep their mouth moist, then all the things, right?

So if they want it, they want it. 

Diane Hullet: But if they’re right at the end, you’re not push. 

Julie McFadden: Yes. And the original question, which I kind of went on a tangent about was like the things that I want people to know. That’s what it, the main thing is that the body’s built to die and it knows how to do it. So let’s not get it in the way of that.

The less we get in the way of that, the better. Um, as far as actively dying goes, that’s what I love to show in my videos because if you’re not used to seeing someone actively dying, which. A few hours to a few days before death. It can look scary and it can look like they’re not okay because you’re not used to seeing ’em look like that.

And. We know our, you know, I know as a hospice nurse who’s used to seeing a body dying, that this is very normal. So, you know, their face is going to look different because their eyes are usually open. They’re not blinking, they’re not making eye contact with you. They’re unconscious for the most part.

They’re not usually waking up and talking or saying, you know, um, making eye contact. Their mouths are usually open because all of our muscles are relaxing. So it takes muscles to close your mouth. It takes muscles to. Hold your eyes shut. Those things are relaxing. So your eyes are a little open. Your mouth’s hanging open.

Sometimes your tongue’s doing weird things. Your breathing always changes, and that’s a like a metabolic thing. You, you know, your chemistry’s changing. So it’s changing the way you’re breathing. Um, You’re usually unconscious. You’re usually not eating and drinking. Uh, and there’s usually like secretions, you know, just sounds, things that sound different, look different.

You’re breathing different, you feel different. So the people who are watching this think, I love ones being tortured. This is awful. I can’t believe this. And really, it’s like the most natural thing ever. Uh um. We just need to see it more so we know it’s natural. And I think we show, you know, tv, I mean, everyone knows this, but like TV and movies, like someone’s talking, talking, talking, saying some nice monologue and then they close their eyes and they die.

It’s like, that’s not. How this goes. Right. So I guess every once in a while it can, that can happen, but for the most part, that’s not what’s happening. You 

Diane Hullet: know? I think of the term labor, you know, I think of that. Yeah. When you talked about the labor of birth, it’s like the labor of death. Like it is, it is work to get out of the 

body.

Julie McFadden: Yeah. Yeah. So I just like explaining what it looks like, right? And, and either explaining it or showing it in some videos, uh, where I, I show what it looks like to have the changes in breathing or to hear the terminal secretions, which is also called the death rattle. Um, just to help people, people who choose to want to watch it, cuz some people don’t, but people who choose to.

I think it’s good. I think knowing what to expect right helps decrease. 

Diane Hullet: I know one person I worked with, she said, um, she said, well, this is so weird, you know, she said like, when I had my son, that was the first birth I’d ever been a part of. And then when I was attended my sister’s birth, she was like, oh, you know, I learned so much through that attending.

Why couldn’t I have done that a few times before having a baby myself? And she said right way about death. Like, I just kind of would like to get a little more familiar with this before a loved one is going through it. Yeah. So, You talked about sleeping and eating and drinking and breathing. What are the other big ones you like to cover?

Julie McFadden: Oh gosh, there’s so many. Um, I think talking about morphine, I’m talking about medications you can give to help with some symptoms, which usually are not, the symptoms are usually not coming from death. They’re usually coming from diseases. Um, and the fear of giving medication at the end of life. Um, I always like to educate about more.

Morphine is okay. You know, and morphine can help with more than just pain. So, um, it can help with pain and it can help with shortness of breath. Um, like you usually see people having some sort of labored breathing or changes in breathing, which doesn’t really need to be medicated, right. Uh, that’s a natural thing.

And the, the body is just doing it. It’s like a, almost like a biological response, but if you think the person looks. Like they’re uncomfortable or they have like a grimacing or they just don’t look fully relaxed. A little bit of morphine is not going to kill, uh, is not going to kill your loved one or make things happen faster.

It’s just going to relax their diaphragm, relax their central nervous system and kind of make them, you know, I think because opioids get a really bad rap in the, in our world because, because they are being abused. And that’s a whole nother podcast. Right. And, um, and I feel. I feel for drug addicts. And so there’s nothing, no shame there.

It’s just because of that, people are so afraid of them and they automatically assume any kind of pain medicine’s going to kill someone or at least hasten their death. And that’s just not true. It’s actually pretty hard because in order to die from that, you have to have a respiratory arrest, meaning you stop breathing, right?

And it takes a lot of pain medicine to make you fully stop breathing. That’s not what we’re doing at the end of life. We’re not giving them enough to make them stop breathing. We’re giving them enough so to feel relaxed. Right? Right. And not everyone needs it, but, uh, I just like to educate about it so there’s less fear around it.

Diane Hullet: We, I hear a lot about how, you know, the, the number, the statistic on the amount of time people spend in hospice is really small, right? Mm-hmm. Like the average stay is just a few days, I think right now. Yeah. I should have looked it up before we talked, but I remember it’s less than a week. Why do you think people are so hesitant to get hospice involved?

Julie McFadden: I think because, you know, I think this starts long before. I need death. Like I, I was just on another podcast trying to explain this because I think, yes, we need to educate about hospice more, but I also think we need to like change the way we look at death and dying as a society. So I think as a society in general, generally speaking, we, it’s like death isn’t happening.

It’s the worst possible thing. It’s not going to happen ever. And it’s like, 

Diane Hullet: it’s the outcome we don’t want. Let’s not discuss it as an 

Julie McFadden: option, right? Yes, yes, yes. We’re gonna do everything for not to happen when, and the reality is death is inevitable and we’re all going to die. So like I think we need to change the way we are looking at death, which is a huge undertaking.

Probably take many. Decades or I don’t know, but like, you know, it’s that we need to start there. We need to start with this whole, like, we’re not really dying type of thing. Uh, because I think 

Diane Hullet: or that somehow that’s a failure rather than Yes. Sexuality. And could yes. Could go, um, simpler or could go more complicated.

Julie McFadden: Yes. Yes. And, And I think with changing that, it can also, uh, it can also help changing this idea of hospice because to me, and I always say hospice is truly about living. And I feel like when I say that, people think it sounds so cheesy, and people think I’m saying that to make people feel better about hospice, right?

Like that’s what someone in hospice would say to make you feel better. Whitewash that 

Diane Hullet: fence. You think it’s Yeah, one thing, but it’s another. 

Julie McFadden: Yes, but really, I mean that say that I, I, I truly mean hospice is about living. Unfortunately, we live in a world where we’re gonna die. That’s it. At least right now, that may change, but right now we are, and there are specific diseases that we kind of know you will die from if you get them.

Uh, And I, and I guess I say it so harshly be, or I don’t want to, but I say it. So like straightforward, because I think people need to hear that so they can choose how that looks for them and they might choose to, um, The way, I don’t like, I, I obviously have a, I obviously have an opinion about what you should do, which is like accept that that’s what it is and kind of make your choices from there.

Because I think if people know, hey, you likely have a year or two, maybe because of this disease that you now have. How do you want that to look like? What do you want those last couple years to look like? Um, do you wanna be at home? Do you want to be doing some things but not, you know, some medical interventions, but not everything Because you can choose, you can plan how your last couple years look.

And hospice can help you with that. So that’s why I feel like it’s a place to live because, um, we’re helping manage symptoms. We’re helping you go through this process of death and dying, which is hard, and we deal with it every single day. So we help you and your families kind of go through it all. Um, so you have a.

I think a more fulfilling and more peaceful end of life journey versus one of like fighting and un not being aware and symptoms and uh, and it’s not always like that too, right? I’m kind of painting this picture of like one’s worse than the other, but I just think it’s important to, um, at least plan, you know, like hope for the best, plan for the worst.

Diane Hullet: There’s something too about it, it feels like when someone is direct themselves in looking. The truth of their diagnosis. If it’s a diagnosis, then that helps the family be more, um, like on the same page. Cuz I think so often either the dying person or a family member or uh, people are out of sync. You know, and so it can even be that the dying person has been with one of their children and maybe their spouse, but then the other child comes in from outta state and it’s almost like you have to start over.

Yes. Explain the processes and bringing them up to speed. Cuz you’ve traveled some tricky ground about yes, the diagnosis is and what the possibilities are. So I think about. Well, I think the medical field, and I think about hospice and I think about doulas as being and social workers as being people who can help the family.

Come together, hear the facts, and get on the same page. Mm-hmm. Which, you know, if the, if the person says, I don’t want any more chemo, and the kids say, no, you’ve gotta fight like crazy. That, that’s a discrepancy. Right? Yeah. But how do you work through those discrepancies? And as far as I can tell, being silent about it and ignoring it and pretending it’s not happening, doesn’t help.

Julie McFadden: Right. And I think too, there’s just a lack of, you know, like I, like, I think people just need to know more about healthcare and about specific diseases. If you’re not in it all the time, you don’t know. So you don’t know how, like I can clearly see someone’s diagnosed with, um, let’s just say pancreatic cancer, right?

And, um, we know as healthcare workers. I say we like, you know, the oncologist, all the people who deal with that stuff all the time. What the, what, what it usually looks like, what the progression looks like, what the next steps are. Because I’m not saying like everyone should just go into hospice. Right when they, I, I just mean I think we even need to have knowledge around, if you don’t go, if you don’t wanna go into hospice, what does that mean?

What does that look like? What steps do you have to take? What chemos are you gonna take? What surgeries do you have? Once the surgery’s over, then what? What, you know, like, I think we don’t, we also don’t do a good job at kind of showing the people. That are going through it, the big picture. Right. And like this is, they can the trajectory 

Diane Hullet: of what we think will happen so then they can make choices.

Yeah. I think they sometimes give us, we’re given just like the next step. Yes. Like this is what we recommend 

Julie McFadden: next. Yes. Which I get because it’s overwhelming and you know, like there, there’s nuance here, right? I’m, I’m kind of speaking like I’m speaking very generally when I know there’s nuance and it’s not black and white and all.

That’s why this is difficult. But I think in general, because people don’t understand the big picture of it all, they make choices they might not necessarily make, they wouldn’t necessarily make, if they. It’s the whole picture. Um, and I think we play a lot in our, in our na like as, as humans in this realm of like, well, we don’t really know.

We don’t know for sure. And I think that’s, uh, helpful and nice and beautiful and, you know, hope for the best. All the things and a little misleading. Do you know what I mean? Like, um, so I don’t, I don’t have the, I don’t know really. I don’t really know the answer. I don’t wanna be Miss Doom and gloom and like give everyone bad news all the time.

But also I think it’s a little unfair that we always try to live in this realm of like, well, we really don’t know. I don’t know we, and. Right. Or 

Diane Hullet: it, it’s almost like, I think I’ve heard people call it like toxic positivity, right? Yeah. Like it’s all gonna turn out well, maybe it is. And, and turning out may include dying from this.

Yes. If you knew that. Or if you face that, even if you’re not sure of the timeline, how would you live differently? 

Julie McFadden: Yeah, yeah, yeah. And then, so we need to have more conversations like that in general, everywhere. 

Diane Hullet: Yeah. Yeah. I love that. I mean, I think that in some ways is probably your most important message, you know, is that learn about this and then it, you won’t be so afraid.

Yeah. As the caretaker, as the person who’s going through this unfamiliar labor, um, as the children, adult children, or family and friends. How can you educate yourself in simple ways, like listening to this podcast where, yeah, you just learned a few things that maybe you didn’t know before, or maybe you’re listening and nodding your head going, oh yeah, that’s what happened when my grandmother died, or That’s what I saw with my uncle.

Yeah. 

Julie McFadden: Can I give you a good example? I’m sorry to interrupt you. Oh, gimme a really good example though. When I do thi see things on TV or ORs, like when I think like, oh my God, that’s a, that’s a, that’s a great example. So there’s a show, I think it’s on Netflix called From Scratch or it’s not a show, but it’s like a series, maybe episode seven.

Like that. I don’t think they do it perfectly right. But there’s an episode where they, I think they do a great, uh, they, they, they show a really great example of how healthcare can kind of really, um, miss the boat where someone is definitely terminally ill. Right, but they’re in the hospital, not for their terminal illness, but from a symptom of it.

So like they got septic, so they had, uh, they got, um, bacteria in their blood and now they’re sick. They’re septic and becau and because of the, but they don’t address the terminal illness in the hospital. They just address, address the being septic. And now because he is septic, his liver’s failing, his kidneys are failing, all these things are failing and different doctors are coming for each individual organ versus talking about, This person’s dying.

That’s what’s happening. This person has a very terminal illness and things aren’t happening because of that illness. And instead of addressing that, we’re going to have the kidney doctor come in and say, maybe you should start dialysis. We’ll have the liver doctor come in and say, maybe you should get a, maybe you’ll be on the transplant list.

Like, like, Instead of seeing as a whole, this person is dying because of this terminal illness, let’s talk about it. And, uh, they just do a really good job at at, and that’s what happens all the time. All the time. And if you don’t know better as a family member, you’re just listening to this doctor and that doctor and like, and uh, and no one’s doing anything wrong.

They’re just not addressing this as a whole. Right. And it’s like, What? What’s going 

Diane Hullet: on here? That’s a great example. And so as the caregiver or the advocate, or the family member or the friend who’s there, How do you kind of keep helping go up to that big picture and see what the choices are? And this is where, you know, I really love this whole thing of like, how do you have these conversations earlier?

I know. How do you have them when you’re not in the hospital? How do you have them when you’re sitting around the dinner table having a great meal reflecting on your life or something? And so there’s not this urgency to it and this fog of the chaos and the. Yes. So you kinda wanna think through your values about this in, and there’s so many good ways to do that, right?

There’s the five wishes. Yes. There’s the best three months that I teach. There’s the conversation project. I mean, I think there’s a lot of really interesting ways to educate yourself and kind of dive in. There’s so many good books to read. Yeah. So, and if you like little clips of social media, there’s Hospice nurse Julie.

That’s right. Hospice nurse Penny. Like Right. I love, yes, yes. You’re very different. And you’re both so amazing with what you bring with your personality to these platforms, so, yeah. Yeah. Well, thank you so much, Julie. I mean, I just think bringing this, continuing to bring this topic to the general public is just gonna continue to pay off.

And I, I do think the younger generation, say, I’m thinking sort of forties and thirties at the. And twenties also. I do think they’re gonna have a different relationship Yeah. To this because of some of the education that’s out there. And a lot depends on how their family members die and what they see and what what, um, what can happen in those circumstances.

Yeah. 

Julie McFadden: Yeah, I hope so. I mean, it seems like people are interested, which is always really, uh, it’s just been a really amazing year and a half of seeing people being interested in learning about this and seeing how many other people are doing it too, like you and many others that I see, uh, on different podcasts and social media.

Just, uh, it’s really cool. It’s really cool 

Diane Hullet: to see it. Mm-hmm. It’s pretty neat. It’s kind, it feels like an explosion of, um, interest and energy and information. And then it also feels like a really small world to me. Like I love how people kind of come around. It’s like, oh wait, do you know so-and-so? Oh yeah.

Do you follow so-and-so? And it feels like this network of people. That’s pretty neat. Well do, how can people find out you, how do they follow? 

Julie McFadden: Well, I am basically on all social media, uh, at Hospice Nurse Julie. So if you just put in hospice nurse, Julie, you know, not everyone’s on TikTok. So, TikTok, Instagram, YouTube, Facebook.

So Hospice nurse Julie, you’ll find my videos and 

Diane Hullet: stuff there. Mm-hmm. You show up. Well, thank you so much for your time. Yeah, thank you. You can find out more about the work I do at Best Life, best Death, and you’ve been listening to the Best Life Best Death podcast with Julie McFadden, hospice nurse. Julie, thanks so much.