Episode 55: Demystifying Death with Hospice Nurse Julie & Katie Coleman
In this episode, we embark on a profound exploration of death with the help of two remarkable individuals. Katie Coleman bravely shares her experience as a survivor of Stage IV liver cancer, a path fraught with uncertainty and a lack of available information. Julie McFadden is a hospice nurse whose daily encounters with death provide unique insights. She educates online audiences about various topics surrounding death. Join us as we unpack the mystery surrounding death: the process, the taboos, doctor and patient relationships, and more.
Key Highlights:
- The transition from fear to acceptance of death involves acknowledging and expressing those fears and getting educated about the dying process.
- End-of-life experiences can be peaceful and meaningful, providing comfort and solace to both patients and their loved ones.
- Honest conversations about the dying process are crucial for patients and their families. The fear of death can skew decision making, particularly in the context of terminal illness, but having the full picture can help patients better understand all of their options.
About our guests:
Julie McFadden, BSN, RN, has been a nurse for 15 years. Julie is an experienced ICU, and now hospice/palliative nurse. Julie has been passionate about normalizing death through education to the masses using social media. She has been featured in Newsweek, USA today, The Atlantic, and several other articles worldwide. Her TikTok has 1.4M followers, and you can find her on all social media platforms (Instagram, Facebook, and YouTube) at Hospice Nurse Julie. Julie’s new book is coming out in June: Nothing To Fear.
Katie Coleman is a patient advocate who was diagnosed with a rare stage IV kidney cancer in Dec 2020, at the age of 29. She has shared her diagnosis publicly on social media to spread awareness and to advocate for others with kidney cancer and rare diseases. Since being diagnosed, she has also founded a non-profit, started a podcast and is publishing an upcoming memoir, which you can preorder here. You can find her on social media here: TikTok, Instagram, Youtube and Twitter).
Key Moments:
At 09:34 “At first it felt wrong. I felt like just as a society, we have a hard time talking about death. Understandably so, it's hard, right? It triggers not only our own fears, but it also triggers emotions and sadness from people that we've lost. And so they're difficult conversations to have. But it felt like, especially because there's so much of the fight mentality around cancer, that saying that to anybody else felt like I'm giving up and it felt like I'm not willing to fight. I'm letting people down. Not only am I now dealing with the crippling anxiety of death and dying, but now I'm also dealing with the crippling anxiety of letting people down by even saying and acknowledging those feelings…? But for me, it came from like, first I was terrified to look into anything. It just felt like I was doing something wrong by trying to investigate what it was like to die. But then once I got over that, where I personally found a lot of peace when I started hearing about near death experiences and end of life visions that Julie often talks about.”
At 18:31 “Our bodies without us even trying will do things to help us die and make it peaceful… The body makes you not hungry. The body makes you not thirsty. The body makes you sleep. The more you do that, the more you get in that cycle of not eating, drinking, and sleeping, your body goes into a ketosis cycle, which is different. It's not different than the diet, but with the diet you're still eating, so separate those two. But you can go into a ketosis where you actually feel euphoric. You actually have a natural pain analgesic that makes you feel better. So just biologically, to me, it is miraculous to have learned that being a hospice nurse and to see it with my own eyes. So like as an ICU nurse, you get so zoned in when you're in healthcare about which section of healthcare you're in, you know? So you're so used to being a certain way in an ICU nurse, giving all the fluids, doing all the things that you don't learn the other things, at least I didn't. So to see this shift in how being dry or being dehydrated at the end of life can be helpful was eye-opening. I never would have known that as an ICU nurse. Witnessing these biological processes made me realize how amazing our bodies are.”
At 22:02 “All I know is in watching people die a natural death, people need to know about this. People need to know about what it looks like and what happens to our bodies because it's not as scary as we think. And then when I think of my own mortality and I think about if I got diagnosed with something terminal tomorrow, I'm still human. I'm gonna have all the feelings, anger, sadness, scared. I'm still gonna be scared, but I also know that my body will take care of me. My body will take care of me. And I know that because I've witnessed it.”
At 47:20 “I need to know what happens if I do nothing. If we didn't do anything, zero treatment, what happens? And this is a super senior doctor. He just stops and he goes, you know, in my many years of experience, no one asks me that. He said, people don't ask me that question. And I was like, well, how else are you supposed to evaluate any other decision? If I don't know what happens, if I did nothing, all other decisions are not grounded in anything.”
At 51:00 “I think patients go through a very similar type of grief when they're processing this kind of news. And so I almost wish – those appointments might not be the best place to have those conversations, but I wish there was almost a way. And honestly, I want to have those conversations with my physicians. I don't want to have them with a different therapist somewhere. I don't know why. Like for me, I want that conversation with my physician. And I wish there was a way that you could have the conversation about treatment goals and shown, here's what your options are for treatment. Here's what happens if we do nothing. Here's your treatment options. Feel free to choose. Take some time to think about this. And then I wish there was an option behind the scenes for patients to be able to flag, I'm interested in finding out more about hospice, I'm interested in finding out more about, what my prognosis is, or like, some way for patients to indicate like, okay, I've reached this point, that I want to have more of these hard conversations. We both acknowledge that this is gonna be a hard conversation and this is something I've signed up for.”
Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
YouTube Timeline:
0:00-13:59 About Katie and Hospice Nurse Julie
14:00-25:05 From the ICU Room to Hospice
25:06-32:00 From Taboo to Acceptance of Death as a Patient
32:01-51:31 How Taboo Surrounding Death Impacts The Patient Experience
51:32-57:04 Brainstorming Solutions to Combat Death Taboo Between Doctor and Patient
YouTube Tags: Manta Cares, cancer, oncology, hospice nurse, death and dying, end of life, cancer awareness, patient advocacy