Transcript of What is Dying? with Hospice Nurse Julie McFadden

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Alive with Steve Burns. There you are. Come on in. Come on in. Welcome to Alive. I'm very glad you're here. You look great, by the way. Anyway, so thanks for coming. Today, I want to talk about something big, real big. Can I ask you, do you ever think about death? No. Okay. Do you ever think about dying? What is that? What is the experience of someone who is physically dying. Yeah. Yeah. Yeah. Yeah, that is something that I think about all the time, actually. I'm making tea. Do you want tea? There's tea. It's actually a thing that I feel like I was forced to think about a lot back in the day It was against my will, because there was this internet rumor going around that I was dead, that I had died and was not alive. Yeah, it was always some weird way. I died in a car crash or a heroin overdose or suicide. That was one of them. It was nuts. No matter what we did, we couldn't get rid of the rumor. It didn't matter. No matter how many talk shows I went on and said, Oh, I feel fine, or how many new episodes of Blue's Clues we made, it didn't matter.

It was this indelible internet rumor that I died. Actually, we get into arguments with people on the street, arguing whether or not I was in fact, alive. It was crazy. And this was also when the Internet was just beginning to internet. It was like millions of people online all telling me that I had died. Imagine that. It went on for five years. Then it went on for 10 years. Then it went on for 15 years. And I'll tell you, it started to feel like a cultural preference. Does that make sense? Here you go. If I'm being honest, it actually, it messed me up. It did. I'm older now, and I've experienced some death and dying. I lost my dog, I lost my dad, and those were painful and profound experiences, and they changed me. And they reminded me that death is a fact of living. Of course, it is. The inevitable fact of our death is the one certainty we hold while we're alive. That got me thinking, why not confront that? Why not talk about it? Because if you think about it, we're all going to die. We're all dying while we're living. So why not ask the question, what is that?

What is dying? Yes, yes. This is what I'm saying. I'm fascinated by this, and I'm actually super excited to talk to our guest today about this. She knows so much about death, so much about the process of dying. I can't wait to talk to her. Come on, let's go. Let's go. Okay. All righty. Okay. So Our guest today is Julie McFadden, and I'm super excited to talk to her. She has been a hospice and palliative care nurse for 15 years. She has a new book coming out on June 11th, and it's called Nothing to Fear: Demystifying Death to Live More Fully. I could not be more excited to read that and talk to her. I found her through TikTok, and her TikTok page, I'm not kidding, it's important, I think, and it's profound, and it's all about demystifying death and dying. It's a little scary in places, but it's also super beautiful and super amazing. She's here. Hang on. Hey.

Hello.

Hi, Julie McFadden. Thank you so much for coming by. We're so excited to talk to you. I really, truly, truly am a fan of what you do.

Thank you. It's such an honor.

I was thinking maybe we should just start simply. Tell us, what is hospice? What is palliative care? What do you do? Okay.

Those are big questions that I'm going to try to generally answer, so we're not here all day because there is a lot of things that can go into that. What is hospice? I mean this with all sincerity. Hospice is about living. People think it's about dying. People die on hospice. You go there at the end of your life. But it is for people who want to live out the rest of their lives, wherever that may be. Most people choose homes, especially in the United States. There are hospice homes and places you can go, but most people choose to be in home hospice, which means they're in their home, and then a team of people comes to care for them to help manage symptoms of their disease that they're dying from. So palliative care is more about managing your symptoms. So a team of people that looks at you as a whole person and manages your symptoms while you go through treatment of a disease or you have some chronic illness. For me, I have a big soapbox that I wish everyone They should be on palliative care the second they got diagnosed with any life-limiting terminal or chronic illness.

I feel like everyone should just get a palliative care team right away.

Can't they? Is there a reason why they can't? I mean, it's just a choice. Is that a choice that people can make?

They can-ish. Many doctors aren't fully aware of what palliative care actually is and what it's for, so they won't refer early enough. There is criteria to get onto palliative care, and sometimes those people, when you first get diagnosed, they don't meet criteria. I see. You have to be more debilitated, which I think is ridiculous. You shouldn't have to be more debilitated. You should just get it because everyone needs it, I think.

Yeah. I remember I was a caregiver for my father when my father passed. He died of lung cancer, and it was a very gradual process. He didn't die all at once. It was a subtractive process, if that makes sense. Things were being taken. Things were taken forever and gone. His strength was taken forever and gone. I remember his beard was taken forever and gone. It occurred to me that I had never seen my father's face until he was dying of cancer. It was such a gradual dimming is how it felt. I was right there with him when he passed. I was right there. It was hard to talk about. It's years ago. But I knew he was there, and I knew he was gone, but I never saw it happen.

Yeah.

I was inches from his face, and I never saw it happen. I couldn't identify the moment. You know what I mean? I guess that's why I'm asking, is there a hard line somewhere where they're like, Okay, there. Now it happened. The whatever has left, and now this person is gone forever.

I think it depends on who you talk to. Okay. I will say, I can talk about this topic forever and ever. There really is a biological, physiological, metabolic thing that is going on when someone's dying, and our bodies are built to die.

I'm looking for a pen. I'm writing that down. Our bodies are built to die.

Oh, baby. There's a whole chapter in my book about it.

I'm reading your book for 100% short.

Thank you.

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Yeah, I mean, That's the first thing I noticed as a hospice nurse within my first year being a hospice nurse. I was an experienced ICU nurse. I had eight or nine years under my belt at a large hospital where I felt like I learned it all. And then that first year of hospice nursing, my mind was blown by what the body did on its own without us doing anything. Your body knows what's going on and will help the process along if we let it, we meaning the medical people, if we just let things happen.

Well, tell me more about that. How does our body help us die? I would assume that our body would be enormously concerned with keeping us alive.

There is a threshold. There is a threshold where our body will fight to survive and live. When the body knows, Hey, this is happening, The cancer is taking over, however we want to word it, the body will eventually hit a threshold where it understands that this is the end. And your calcium levels will go up, so your body will allow you to sleep all the time. And your hunger and thirst mechanism, that part of you that makes you hungry and thirsty, shuts off. So you don't really feel hungry and thirsty. Your body actually feels better physically. The drier it is. So at the end of life, dehydration actually feels better than being hydrated. Then in ketosis, you actually get endorphins released. That helps dull pain.

Interesting.

And feel a little euphoria.

Really? Wait a minute. So there's mercy in that somewhere. You know what I mean? That's actually really amazing.

When I I've seen it the opposite, just so everyone... If anyone's listening and it's like, What? Because I've seen that in the ICU where we're not letting people die. And we pump people full of fluid because that's what's going to keep their blood pressure up. So we pump them full of fluid, whether it's blood products or just regular normal saline fluid. Because their body is dying, the body is not keeping that fluid where it should be in helping the body stay hydrated. It expands and starts causing edema, going into the lungs because the body is saying, Hey, I thought I was dying here. Why are we filling with fluid? I can't handle this. And then they go into respiratory distress, and then you have to intubate them. Put them on a breathing machine, then their body is swollen, and then we have to diarreece the body again, which means take off that fluid to try to get it back to homeostasis. When the body is naturally doing something, yes, we can try to intervene, but we have to do all these things to make it work.

That makes sense. When my dad got to that point where he was sleeping all the time and he felt far away, what are they concerned with? What do we know about what they're experiencing? Are they full of regrets? Are they expressing things? What are dying people concerned with?

From what I've witnessed, people die the way they lived. Well, I know.

Bald and neurotic? I'm going to die bald and neurotic? Yes.

Listen, I take that so to heart because I think about that all the time. I always go, I'm so neurotic. How am I going to do this? Okay, so truth, truth, for real. This is a good lesson for us because I'm the same. I'm the same. I'm not bald, but I'm neurotic. I really mean that people die the way they lived. Wow. If your family didn't a great family dynamic, you're not going to suddenly have this amazing family dynamic just because someone's dying. Sometimes the drama of it all or something can bring people together. But most of the time, it's like, if you guys weren't talking before, you're probably not going to start talking. If they are willing to discuss the fact of that with their loved ones around, even if that discussion is something that sounds negative, I don't want this to be happening. I'm I'm angry that this is happening. I'm sad. I'm pissed off. I'm whatever it is. Those people tend to live better and die more peacefully just because they were willing to acknowledge the fact that they understand it's happening. That is half the reason why I decided to get on social media because I was like, people need to understand that talking about their death, talking about death and dying, even if it feels like in a negative connotation, it still helps.

Oh, that's amazing. That actually reminds me of what you were saying from a biological standpoint, from a medical standpoint, we die the way we live. That is one of the hugest things anyone ever said to me. It reminds me of so much other stuff that I've read. All the old stoics, Seneca and those guys, Marcus Aurelius, they would practice death, which I always thought was ridiculous. But they would wake up and say, What will it be like when I die, when it is hurt, when I'm eaten by a bear, what will that pain feel like? They would practice that every day. But it's actually an amazing practice. To accommodate that fact has to change the way you live, right? Yes. Because We die how we live. That's beautiful. I've already really liked talking to you. You're great. You're great.

Thank you.

We're great. All right. So I found you through TikTok, right? And you had me bawling. A lot of what I was seeing there was hard to look at, but also very beautiful and extremely important. And I love that you're doing that because you're talking about the hard stuff. And I think one of the things you said was, are they safe? Are they clean? Are they comfortable? If so, you're doing fine. But my instinct was like, no, I have to invent a camera system, and I have to get this special chair, and I have to do a million, zillion things to fight back, to fight, to struggle against this process that's happening. I do wish that I had been more present because the moments where I was present with that were the most important moments I've ever had.

Yeah.

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I was going to say yes.

Oh, wow. Okay.

I think so. Again, I think it depends on who you talk to, right? But from my experience, animals know what's up. I mean, time. Big time, big time. Yeah.

I walked into the room I was like, Oh, this looks different. Things look different today. And then the hospice nurse was like, Yeah, this is happening. I said, Oh, what do you think? Like, days, hours? What do you think? She's like, I don't know. Watch the dog. The dog will know. Apparently, just two hours before he passed, my dog woke up as if he had heard something and went over and nuzzled my dad's hand. My dad hadn't moved in days. And my dad, his hand, woke up and petted my dog. God, it's a sad story, even now. But it seemed like he knew. I like to think he did. I like to think he said goodbye.

I've seen so many amazing things with dogs and cats with the owners, where they'll take off symptoms, they'll protect their loved one, they'll sleep under the bed, they'll sleep on the bed continuously, they'll howl when someone dies. It's just intense. It's just intense. I just feel like- Dogs.

Dogs. I love dogs.

Now, what do you think our health care system gets wrong about dying and death?

A big sigh over here.

It's so long to go. I mean, in hospice, specifically, the thing we get wrong is, one, we don't provide 24-hour caregiving for families.

Oh, God. Yeah, it's impossible to get that. That's the thing you can never get.

It's impossible to get it. It's impossible because Medicare is our boss, and Medicare says no. Working class families, which is most of America, they can't do it because they have to work. I mean, it's just insane.

You have to be a billionaire. You have to be a billionaire to have someone 24/7 helping you die. You have to.

I have made a video that says, In order to die well in America, you have to be rich. I get sad watching people try to die well in our healthcare system, and it's nearly impossible. You got me fired up, girl. Oh, my God, Steve. I figured. I get so angry because it's so unfair, and there's nothing I can do. There's nothing I can do.

I've seen this problem, but I'm less afraid of the moment of death than I am of the process of dying for some of these reasons. I just imagine an ugly room with a linoleum floor and fluorescent lights in a hallway that smells like pea, and I'm worried, probably, about what I'm leaving behind for other people to deal with, right?

Can I hopefully ease some people's fears and your fears after I gave that whole spiel of like, There's no hope. There is There is hope.

Okay. There is hope. Please really ease my fear of dying.

Yes. Well, I can do that, too. The whole spiel I gave, you have to be rich to die well in America. That is the reality right now. We have a chance to somewhat change that in when we plan for our death. We at least have one person point of contact that knows what you want and don't want. So at least family members can know what you want and don't want if you can't talk about it because you're not cognitively there. People need to know.

It's hard to do. I mean, it's hard to talk to your family about death and dying. It's hard to parent your parents. It's hard to do those things. I'm also guilty of only half planning my estate right now because I don't want to do it. I don't want to. I don't want to do that. I don't want to think about that. I don't want to. But I think it is really important. Oh, yeah. Wait, one more thing. Challenge accepted. You said you could ease my fear of death. That'd be great.

Yeah.

If you can. Okay.

So your fear of death. One, guess what, Steve? What? You are so normal for being afraid of death. Okay. So just because you fear death doesn't necessarily mean that it's going to be awful or there's There's nothing wrong with fearing death. I think there is something to fighting the resistance. I can't fear it when really it's like, I can fear it. So please acknowledge that. Take a deep breath and accept that. It doesn't necessarily mean that I think bad is going to happen just because you still fear it. So that's one. Two, I really do think education helps decrease fear. I don't know how much you've watched my videos or when you read my book, but education around death and dying can really, really ease fear because our bodies, like I said, are built to die, and there's really amazing things that can happen that will help us. And then three, I don't know if you want to go there here with this or not, but I don't know if you have fear of like, Well, we don't have to go there. I was just going to talk Because there's reasons why I don't fear death, too.

It happens to be because I believe there's life after death. It's not a religious thing. And I truly understand that it's a belief of mine. So I never like to push my belief on people. But that's That's also another reason why I personally don't fear death, because I feel like when we die, we go to a place more like home than here ever could be.

Really?

Yeah. I've always felt homesick for a place that I can't remember.

Yeah, I can relate to that, actually. I feel like I've really been shown through other people's deaths that that's what it is.

That feeling of homesickness, I feel like when I die, I'm going to wake up in a place that I've always known. And it's like, Oh, my God, how did I ever forget this? And when I see babies, so another thing I always talk about is when I see babies being born, which It's few and far between, but I have seen babies being born. And everyone there is like, Oh, it's like, Oh, my God, there's a baby. Now it's here and it's crying. And I can weep because it's so overwhelming, this powerful feeling of like, And now there's here. I can look at a baby, and I always think like, Where did you come from, baby? It feels like the baby knows something that I used to know. It's that same home sick feeling, but it's good and it's bad because it's like, nostalgic, but it's like, I miss it. I get that same feeling when I see people take their last breath. I get that same feeling.

Wow. You're saying as someone who spends so much time with the dying in the moment of death, you feel a continuity from that moment and also the moment of birth. Yes. That's something you, as a skeptic and a realist, perceive.

Yes. I think because it's not my grief, I'm not losing the mom. I'm not losing the dad at that moment anyway. I will eventually someday. But the grief isn't there, so I feel like I can be present in the moment for what it is.

That's so interesting. You're not seeing death through the distorted lens of pain and grief. You have a, if I could say privileged position of experiencing all of this death objectively. That is something I never considered. This has been a very deep and awesome and meaningful conversation, Julie McFadden, and I so appreciate you having this with us. I think I need a minute to think about everything that you have said and to go contemplate my own life.

I hit you with a lot. I hit you with a lot.

I can't wait to read your book, and you are an absolute delight and a treasure. So thank you so much for being here with us. This has been wonderful. Thank you, Julie McFadden. Bye.

Bye.

Right? I mean, that part where she said, what was it? Our bodies are built to die because our bodies do all these things to comfort and accommodate our death when we're dying. That I don't know. I don't know why, but that just does a little to make it less scary for me, I guess. It sounds like maybe my dog and my dad got to goodbye. For real, for real. That makes me feel very good. Yeah, but for me, it was when she said, We die how we lived. Yeah. Let's go outside. Okay, wow. Uh, Yeah, that is definitely a lot to think about, huh? You know, the question that I'm thinking about now is, if we die how we live, and we know we're going to die, but we don't know when, how? How do we live? Seems pretty big. You know, actually, I think I'm going to just stop talking about this and take a minute in silence and just think about that one. You're welcome to join me if you want.

Wow. I'm super glad we did this one. That one felt big. Anyway, sincerely, thank you so much for doing this with me. It really does mean a lot. Until next time. That is so pretty.

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