Hospice Nurse Julie

This Hospice Nurse Is Answering Taboo Questions About Death And Dying, And I Learned So Much, 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.

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.

Hospice nurse Julie (@hospicenursejulie) Official | TikTok

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.

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 also dying beforehand, I asked the BuzzFeed Community the lingering questions still on their mind.

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?”

Hospice Nurse Julie: The answer is we don’t know, technically. We use non-verbal pain scales to assess if the person is experiencing discomfort or pain. It’s pretty easy to see that in a dying body, if someone is comfortable or not comfortable. I do believe the person in the actively dying phase is fully unconscious so they’re not consciously in their body wondering what’s going on. I believe we can tell that because of the nonverbal cues the person is showing us.

For example, someone who would be a little more awake during the actively dying phase would likely be restless, possibly agitated, furrowing their brow, and making noises. Picture it kind of like a baby. Babies can’t tell us what’s wrong verbally, but they can show us through being extra fussy, whiny, crying, and moaning. That is what a dying body can actually do as well. So we can’t say for sure what they are feeling, but we have ways to monitor and assess if they are comfortable or not. Lpettet / Getty Images© Provided by BuzzFeed

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

Hospice Nurse Julie: We do believe someone dying can still hear us. Hearing is the last sense to shut down. There have been EEGs done on dying brains that show that the hearing sensor of the brain is still on. We are unsure of how much they truly comprehend. There have been people who have been in an induced coma in the ICU who come out of the coma eventually and do say they could hear people and quote-unquote, “feel and sense” people. Katarzynabialasiewicz / Getty Images © Provided by BuzzFeed

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?”

Hospice Nurse Julie: A pacemaker is totally fine to continue to stay on during the dying process. It interacts with the electrical system in the heart. So, it will not continue to pace someone if the heart is no longer beating. So, that is not an issue; that can stay on. A defibrillator shocks a heart if it goes into dysrhythmia (an irregular heartbeat).

[Dysrhythmias are] a natural process of the death and dying process, and we shouldn’t worry about them. But the defibrillator should be turned off because if the person does go into an irregular rhythm during the dying phase, that person could be shocked, and being shocked is uncomfortable. So, just to be clear, it’s normal for the heart to go into irregular rhythms at the end of life.

Hence why it’s important to have the defibrillator shut off so the person is not shocked if it goes into those irregular rhythms. Those irregular rhythms will not cause suffering, but the shock of the defibrillator will cause suffering. So before someone comes to hospice, they should have their defibrillator turned off, which can happen in a cardiologist’s office. Charday Penn / Getty Images © Provided by BuzzFeed

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?”

Hospice Nurse Julie: I would say no. Usually not. Every once in a while, and I’m sure this person has already noticed this, they’ll have really good days where suddenly they do remember their children, and they do remember things. So they could have intermittent phases in days and moments where they do recognize people.

But at the end of the day, Alzheimer’s is a progressive disease, and usually the last stage of dying, the person is nonverbal, bedbound, and not recognizing anyone. And even if they did, they can’t verbally say they are recognizing people. But really, I would say the last phases of Alzheimer’s are usually the most peaceful.

For years, people with Alzheimer’s have confusion, paranoia, and agitation because they’re very confused. You know, a lot of issues, and that can last for a very long time and be very hard. The last phases of life for someone with dementia or Alzheimer’s are usually pretty docile because they are sleeping 22 hours a day.

They are kind of like a sleeping baby almost. They don’t usually talk or they’re not usually verbal. So, although it’s still really, really hard for the person caring for them, it’s not as distressing because there’s a lot less, like, outbursts and confusion and restlessness and agitation. Milamai / Getty Images © Provided by BuzzFeed

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?”

Hospice Nurse Julie: This is a great question. Okay. So, number one, this person did the right thing. A lot of times, we feel like we have to say something to make the person feel better. Generally speaking, allowing someone to say their fears, and either just being silent and holding their hand and allowing them to have that and not try to push it away, like ‘No, no, no, no, no, don’t be afraid.

Don’t be afraid,’ it’s better. From my experience, allow that [fear] to happen, hold their hand, and be there with them, and maybe even answer truthfully. Whatever the truth is for them, right? ‘I’m afraid too. I can see how you’re afraid. And I’m so sorry. I feel afraid to.’ Or what I usually say, if this is helpful, I normalize how normal it is for people to feel afraid.

A lot of times just verbalizing that fear can loosen the grips that fear has on you… I think there’s something about connecting together in mutual fear, right? It’s okay to fear things. It doesn’t necessarily mean it’s wrong. It just means that it’s unknown, and it’s scary. And that, ‘I’m so sorry you’re feeling like that. I’m here with you. I understand. I heard it’s really normal to have that fear.’ Hispanolistic / Getty Images © Provided by BuzzFeed

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?”

Hospice Nurse Julie: You know, it depends on the doctor. I would say, in general, you be your own advocate. Talk openly about how you’re feeling, about your health issues, and about how you want to know what to expect with all of your doctors.

So, with all of your doctors, since you probably have several doctors you’re working with, you need to be open with them about how you want to prepare for the end of your life, even if they say it’s far off. ‘Oh, you don’t need to do that right now. ‘

No, I want to do it right now. I want to know. You have seen this type of disease over and over again. How do you normally see it progressing? What can I expect? And please, I’m asking you to be honest with me when you think I’m coming to a place where you’ve done all you can do. I would like you to have an open dialogue with me.

The more open you are with them, that gives them permission to be open with you. Now, if you still meet resistance, they’re not the doctor for you. Find somebody else. That’s what I think. If they’re still resistant after you are really open about end-of-life stuff and you want to know all the things, they are not the doctor for you and you should move on. Kayoko Hayashi / Getty Images © Provided by BuzzFeed

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.”

Hospice Nurse Julie: So, great question. I’ve seen many people die young because of hospice. People always think that people in hospice are old, and that’s just not true. I will say there’s usually a lot more terminal agitation at the end of life for someone younger because of the existential — they’re too young, right?

They don’t want to die. The rest of their body is pretty healthy, but there’s one specific part of their body that’s not. So, it usually takes a lot longer too and they can be in the actively dying phase a lot, lot longer. Slavica / Getty Images © Provided by BuzzFeed

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 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.

You can also keep up with Julie on TikTok and Instagram. Hospice Nurse Julie / @hospicenursejulie / Via hospicenursejulie.com © Provided by BuzzFeed

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