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“That’s Just Not True”: A Hospice Nurse Is Debunking Myths And Answering All The Hard Questions About Death And Dying

Recently, we wrote about what the actively dying phase looks like, which occurs during the last phase of life. This was thanks to the help of Hospice Nurse Julie, aka @hospicenursejulie, who educates about death and dying on TikTok.

Woman in scrubs with a stethoscope, standing in an office setting
Hospice Nurse Julie / @hospicenursejulie

Julie, whose viral video about the actively dying phase now has almost 9 million views on TikTok, taught us about symptoms that may appear scary but are entirely normal — like the death rattle, the "rally," end-of-life visioning, and "fish-out-of-water" breathing.

Woman with tied-back hair looking at camera, wearing a black off-shoulder top
@hospicenursejulie / Via tiktok.com

Julie wants to alleviate some of that fear around death and dying – she says that by educating ourselves about the final stages of life, we can better be there for our loved ones.

Close-up of a woman speaking, with a text overlay about alleviating fear through knowledge
@hospicenursejulie / Via tiktok.com

Now that Hospice Nurse Julie has educated us about the actively dying phase (I recommend you read the article or watch her video if you haven't yet), and hundreds also shared what they wish they knew about death and dying beforehand, I asked the BuzzFeed Community the lingering questions still on their mind.

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From the practical (like does it hurt?), to the taboo (do our bodily fluids really just release?), to the personal (like how can I deal with my death anxiety?) — here are all your questions Hospice Nurse Julie answered about death and dying:

1."What does the actively dying phase feel like to the dying person? Do we know?"

A younger person's hand gently holding an elderly person's hand over a red blanket

2."When someone is dying, can they hear or feel us?"

Person resting in bed with another's hand holding theirs in comfort

3."When someone is dying, does it hurt?"

Hospice Nurse Julie: So, I always like to say that dying itself does not hurt, especially if you're dying a natural death, meaning like from a disease, but you're allowing the natural progression to take over. That does not necessarily hurt, but the disease and its symptoms can cause pain. The actual act of dying — likely not. But the disease you're dying from can cause symptoms that make you hurt, hence why we have, you know, doctors and nurses who can help with those symptoms so you can have an as peaceful as possible death.

4."What happens with a pacemaker or defibrillator during the final minutes of death?"

A doctor is using a stethoscope on a patient's chest to listen to the heart

5."Do you lose control of your bodily fluids immediately?"

Hospice Nurse Julie: Not everyone at the end of life will lose control of their body fluids. It's not like everyone will suddenly urinate and defecate because they have died. However, I would say at the end of life in the actively dying phase, everyone will be incontinent. So you will need someone to change you and care for you if you do die the natural, gradual way. Not everyone does — if you die, suddenly, that likely won't happen. But if you're dying a gradual, slow, peaceful, comfortable death, you do get to a place where you are unconscious, and someone has to change you because you still are urinating and having bowel movements. Maybe not as often as you normally would, but you still have them.

However, when someone dies, I think there is a little bit of a misconception that the second they die, they urinate and defecate. That's just not true. They can at times, and that's because all of the sphincters in our bodies, which keep fluids and waste in until it's ready, will loosen and relax and then let go of bodily fluids, hence why people can have fluid come out of their mouth. They can have a bowel movement; they can urinate. That can happen immediately upon death, but it doesn't always happen. It just depends.

6."My mom has Alzheimer's and doesn't know who anyone is. Will she recognize those at her bedside at the last stage of dying?"

Person sitting on a bed looking out of a window in a room with sheer curtains and a chandelier

7."The thing that broke my heart the most was, a few days before my uncle passed away in his late 80s, he started to cry and admitted he was scared. And I had no idea how to respond, so I just held his hand. What are some ways I can 1) respond to this or soothe a scared loved one, and 2) deal with my own fear and anxiety of mortality?"

A younger person comforting an older person lying in a hospital bed

Hospice Nurse Julie (cont.): And then how can we deal with our own fears, right, our own fear? Again, it's the same thing. It's through talking about it. It's through saying, 'I'm afraid, I'm afraid to die, I don't want to die, I'm afraid of it.' That alone. Awareness around the fear can really help loosen the grip.

I've also heard many people who have death anxiety tell me that watching, learning, and educating themselves about how the body works during the dying process has helped alleviate a lot of their anxiety. I think education can help decrease fear and truly understand and contemplate our mortality — knowing it's going to happen, knowing it's normal to fear that, and soothing ourselves in the process. I think it's when we deny the fear, deny thinking about it, not looking at it, is when the fear increases. I think fear decreases when we do look at that fear, when we do accept the fear, and when we do learn about what we're actually fearing.

I hope that helps. I love that question.

8."I have 200 medical problems. No exaggeration. I usually have a healthy emotional attitude about it all but sometimes it’s overwhelming. Will the doctors tell me when they think I'm nearing my time?"

Medical professional comforting a patient by holding their hands

9."I have incurable cancer and have felt/been very close to dying on several occasions. Medical science has kept me alive thus far. There's a lot of advice and information about what happens when an older person dies, so my question is, what differences might there be when it's a younger person? I'm still in my 20s and don't expect to live to see 40."

Person sitting by a window in a striped top, looking outside

Hospice Nurse Julie (cont.): But I will say, because this person is asking this question already, I feel like there probably will be less angst. People, even when they're young, who have come to terms and accept that they're dying — which I'm not saying is easy or even necessary to do, I get if you're like, 'No, I'm not going to ever accept that' — but people who do tend to let go a little easier at the end.

Now, how can you work on that? I think this is exactly how it works: by asking questions. Knowing and thinking about your end of life, how you want it to look, trying to really contemplate the fact that it's actually going to happen. And because of that, how do you want to spend the rest of your time here? In doing that, you can help get yourself to somewhat of an acceptance somewhat of a knowledge and a belief, knowing that you're going to die. So then you can change the way you're living – if you want to change the way you're living — to help you feel less like you didn't do the things you wanted to do or spend the time the way you want to spend it. But I feel like the person asking this question is already kind of a step ahead because they're already thinking about it, which is going to help tremendously.

For more information about death and dying, Hospice Nurse Julie's forthcoming book, Nothing to Fear: Demystifying Death to Live More Fully, comes out June 11, 2024. Julie shares the lessons she's learned in her 15 years as an RN in the ICU and hospice, answers more of your questions, and destigmatizes conversations around death and dying.

Smiling Julie in scrubs with a stethoscope around her neck poses confidently

For our previous articles about death and dying, check out the below:

This Hospice Nurse Is Educating People About The “Actively Dying” Phase Of Death To Alleviate People's Fears, And It's Eye-Opening

People Who Witnessed A Loved One Die Shared What They Wish They Had Known Beforehand, And It’s Heartbreaking But Necessary To Hear