Hospice: End of Life Care
Julie McFadden, Hospice Nurse
- What is hospice?
- Hospice: focus on quality of life
- Going into hospice care
- Explaining end of life events
What drew you to nursing and then to hospice care?
Julie McFadden: I wish I could say that I always had a passion for nursing. That is just not true. I’ve been a nurse for 14 years. I had an undergrad degree in psychology, and a friend of mine was going into an accelerated nursing program, which means you can get your four year degree in three semesters. So it’s really intense, but then you’re done and you have this nursing degree.
I didn’t know what I was doing and I liked what she was doing and I thought, I’m just going to try it. So I did. I loved it. Thank God, because you really have to love it because it’s hard and I loved it. Then I was like, I’m going to be the best nurse ever. I’m going to work at the best places and be in the ICU. And I did, which is great.
ICU to hospice nurse
Julie McFadden: For nine years, I was an ICU nurse. It was just not the place for me, I stayed way too long. I always encourage nurses to try other places because I really thought I made the wrong choice. I thought I never wanted to be a nurse again. I was looking into other things to do.
But being an ICU nurse did make me passionate about learning about death and dying and trying to find another way. If you didn’t want to die in the hospital, how could you die? That got me into transitioning into hospice. Thank God, because I do want to be a nurse and I love nursing now. I really do. I love my career. I wouldn’t do it for free. But if I had all the money in the world, I would still want to do hospice nursing.
That’s how I got into it. I got into it because I thought, I do not like the ICU. I don’t want to be here. I don’t want people to be here. It’s good for some people and some nurses, and it wasn’t for me, and it made me passionate about learning about other ways to die.
If you’re going to die, which all of us are, and you know, it’s imminent. For whatever reason, there has to be another way and there is. Hospice was it. Now I love it. I’ve been a hospice nurse for about five or six years. I keep kind of losing track, but something like that.
The Patient Story: You had your experience almost a decade in the ICU. I can only imagine just how intense and emotional that must have been, but how that kind of shifted you into thinking about death in a different way. And so let’s go straight into what is hospice, right? I think people have a general sense. They think of palliative care, but what does it mean?
What is hospice?
Julie McFadden: Hospice is federally funded, which means that it should be across the board in the United States given the same… the care should be the same because Medicare is our boss and Medicare says you can do X, Y and Z. So hospice is more of a comfort-focused program where it’s in the home or in a facility if the family can’t take care of their loved one who’s dying.
You don’t necessarily die right away on hospice. That’s one of the big myths people think like, oh, it’s too soon for hospice. We’re not ready to die. That is what I try to talk to people about. I want to get people onto hospice earlier because it’s about quality of life versus quantity of life. There are so many things we can do in hospice to help with that.
It’s not like you come on to hospice and everything is stopped and no help is given. It’s the opposite. So much help is given. We can still give you antibiotics, give you different medications, we’re amazing at symptom management.
In fact, a lot of people on hospice feel better because they’re home and we are way more aggressive and way less afraid to use medications to help with pain and different symptoms.
A comfort program – no treatment
Julie McFadden: It is a comfort program. You can’t get treatment. You can’t have chemo and radiation and be on hospice, so there is a deciding factor there.
But a lot of times people don’t even have the option anymore to do chemo and radiation because their oncologists are saying, ‘Not right now, anyway. You’re not strong enough right now, in my opinion.’ If that is ever said to you, go on hospice, you can always come off, you’re never stuck on hospice.
So it’s truly a program just to help. That’s what I always say. It is a program to help. You can come on. You can come off. You can get the help you need in your home, so I can talk and talk and talk about what hospice is, but that’s a generalized statement.
Different types of hospice patients
The Patient Story: What you’re saying is this is symptom management. You all are really good at that, which I think a lot of cancer patients are looking for. And so if you’re on your treatment, then you are being told you cannot take more treatment, at least at the moment. You can always enter hospice and like you said, get off of it if treatment again is right for you.
So thank you. That, I think is a really good distinction to make. I would love for you to talk about the kind of patients you see. I think you did say largely there’s cancer patients and then there’s dementia and they have different sort of experiences, right?
Chronically terminal patients
Julie McFadden: There’s more of what I call, they’re terminal, but they’re chronically terminal, so it’s like a long, drawn out disease process. Those are like:
- congestive heart failure (CHF)
- Chronic obstructive pulmonary disease (COPD)
So that population usually comes on hospice, then can come off hospice and come on because their disease waxes and wanes, and it’s a drawn out process.
Whereas cancer patients – not everybody, this is generalizing – but cancer patients, their trajectory is usually a little more steep. It’s usually a steeper trajectory, meaning a faster decline. They’re not always on service as long, which again, I hope to change the culture in that.
I think with cancer specifically, and I don’t want to take this away from anybody, but there’s a big fight we have to fight. People think they’re giving up if they go on hospice. And that’s just, I want to change that because really?
Hospice is here to help with your quality of life, right, and if people are more focused on the quality of life, I feel like if hospice would stop getting such a bad rap, I think people would come on sooner. Then the trajectory of the whole cancer patient on hospice would look a little different.
Hospice: focus on quality of life
The Patient Story: How would it look different?
Julie McFadden: I think they’d have a longer period of living their life. I think a lot of cancer patients are not living the life they’d want to live. They are in and out of the hospital for symptom management, for radiation, for chemo, for this, for that, for that. I don’t know.
And again, this is a bigger conversation, but ‘for what?’ is my (question), because is this really prolonging anything? And if it is, what’s their quality of life, right? Is it ‘worth it?’ I hate to say it like that, but because it may not be giving them more time and now it’s just taking up their time being in the hospital.
So to me, I would hope that we could get them on sooner so they could have a longer period of quality of life where they’re living their life, they’re going out, they’re going to picnics, going to their friends, you know, just doing whatever they want to do versus being at home in the short trajectory of time where they’re just sort of declining at home and we’re keeping them comfortable there. So that’s what I hope for.
How long are patients generally in hospice?
The Patient Story: I have a quick question, Julie. So when you were talking about the different timelines, so you have like the COPD, dementia sort of the waxes and wanes, and these are all very high level questions and broad strokes, But up to how long generally is that range and how long they’re in hospice versus for cancer patients? How long typically is that?
With chronically ill (COPD, CHF, dementia, etc.)
Julie McFadden: Anyone coming on to hospice has to have at least usually six months or less to live. So usually the people with dementia and CHF(congestive heart failure) will be on it for at least six months, usually. And then at the end of six months, we re-evaluate where they are and they can still continue to stay on.
But sometimes they come off if they get better. When I say get better, I mean their symptoms are better managed usually. They actually can come off service because being on hospice really helps. It helps manage everything and gets them to a place where they can come off.
So usually they’re living longer than six months, but still staying on the program and and just depending on where they’re at.
With cancer patients
With cancer patients, they are usually dying within the six months. Usually, I’d say like three months. I mean, it really does depend. The average stay of any hospice patient, I think all of them combined is 72 days.
So that’s the average with both of those groups combined. But I’d say the cancer patients are usually three to six months. They usually are passed by six months.
Can patients be on hospice for longer?
The Patient Story: Can they be on hospice for however long?
Julie McFadden: Yes, the care can go much longer than six months. Medicare has tightened that a bit. Like I said, Medicare is our boss and they do watch us as hospice providers very closely because when they first started, there was a lot of Medicare fraud, so people would just take Medicare’s money and not really do what they were supposed to be doing with it.
Now we’re very highly regulated. So people can definitely stay on longer than six months. They can stay on technically as long as they need, if they meet criteria.
We have to basically prove to Medicare that this person still has less than six months to live each time we’re recertifying them and proof of decline.
So a lot of times with the patients like Alzheimer’s and CHF patients and COPD patients, it gets harder and harder to prove because they are doing so well and they’re really maintaining their weight. They’re maintaining their functionality so they do have to come off service.
Whereas with cancer patients and again, I’m generalizing here, but we can show decline. We can say, look, they used to weigh 130. Now they weigh 125. They used to eat this much. Now they eat this much, they’re sleeping. So it depends.
And then sometimes cancer patients will want to come off because there’s a new trial coming out or something where they want to. They want to try and they can, and they can just come off service and then come back on later if they want. So it’s very flexible, which a lot of people don’t know.
Are there cancer types you see more often in hospice?
The Patient Story: I really love that you’re highlighting the flexibility of this. Again, I think that’s a really important point and you’re talking about clinical trials, and we do talk a lot about those.
There are specific cancers where many, many are happening with promising treatments. And so are there specific kinds of cancers you see more often?
Julie McFadden: A lot of pancreatic cancer, a lot of bile duct cancer, cholangiocarcinoma. I’m saying it wrong, but it’s bile duct cancer. And then so pancreatic, bile duct, a lot of metastatic (cancer), meaning it starts somewhere that’s not terminal, right? They (may) do really well.
Then eventually it can be metastatic going to other organs and those types because it’s on certain organs like the liver or something they can eventually be terminal or brain cancers can be.
But still, by the time we’re seeing them, they have been doing this for a long time, right? Not every cancer is it like they just got diagnosed. This could be a long thing they’ve been doing for five, six, 10 years. Then by the time we see them, it’s very end stage.
So basically any organ you can think of with cancer on it we have seen and some are longer ‘battles.’ I don’t know if I like the whole battle analogy, seems like they’re giving it up, but it’s for lack of a better word.
For cancers like pancreatic cancer, the reason why they’re terminal is because they can’t get diagnosed. That’s the problem with those types of cancers.
Going into hospice care
What is the transition to hospice from active treatment?
The Patient Story: What does it look like? I’m a cancer patient. I’ve been in the hospital in and out for different kinds of treatment. It’s been decided for whatever reason, okay, hospice is this next step. What does that look like?
Julie McFadden: It depends on what you want. So I think this is unfortunate, but this is where we’re at. I always try to make it very clear that people know this because a lot of people are shocked when they hear this.
If you go home to your house, which most people do – and I love that, I want everyone to do that – the day-to-day care that you need will fall on your family. A lot of families are like, what do you mean?
I have to work. Or what do you mean? Like, how else am I going to provide the insurance for my loved one? All the things.
So it becomes a hardship, becomes a really big hardship, and there aren’t programs out there to help middle class working families, for the most part. So it either takes more money on their part to:
- hire a caregiver,
- hire a service to be the 24 hour caregiver,
- or a family member that can do it because hospice will not be there 24-7.
There are certain circumstances where they can be, but it’s usually very short periods of time and it’s not long lasting. So that’s one, you can go home. I actually love that so I’m painting a bad picture. But I love that most people go home and most people can figure it out, work it out so someone can be there.
We can use our social worker to try to help them get into some kind of skilled nursing facility, or boarding care in California. We call them boarding cares. Some states have hospice homes or hospice facilities, which I love.
I haven’t seen any, at least in Los Angeles, where I work. I haven’t seen hospice homes or hospice facilities. They may be here, but I haven’t seen them. But I know a lot of my friends, parents who have died, they’ve gone into hospice homes and they’ve loved it. So that’s all. It’s also a good option.
How many patients choose hospice care at home?
The Patient Story: Wonderful How many patients did you say remain in the hospital versus go home versus find care at a center like that?
Julie McFadden: I don’t actually know the percentage, but I think most people go home. If you’re going to stay, you can’t stay in the hospital and be on hospice. So if you’re staying in the hospital, that’s you not choosing hospice.
I think eventually there are times – this is what I don’t want, but this does happen a lot – where families are still saying no to hospice and the hospital is saying too bad because there’s not anything to do, right? There does come a point where it’s like there’s nothing we can do. They have to go home on hospice.
In the ICU, because families refused to take people off machines and it can get messy. Eventually, sometimes you have no other choice but to do hospice.
What happens with hospice care at home?
The Patient Story: So in terms of what your day looks like, Julie, is it going to visit people’s homes and then doing pain management, just checking their vitals? What goes into it?
Julie McFadden: There are several kinds. Technically right now, I’m an admission nurse, so I do all the admission work, which I love because it’s the first time you’re meeting the family, first time you’re meeting the patient. I educate everyone about hospice. I educate them all about their disease, what it’s going to look like.
It is like everyone’s different. I’ve done this for a long time. These are the things you’re likely going to see, and I try to really prepare everybody.
Then we set up the homes with the equipment and supplies and medication. So I do all the setup. And then the case manager, who’s also a nurse, is the one who’s going to see them at least once a week. At least. So usually much more than that, but at least once a week. They can go up to every day if needed.
We go to their homes, we make sure their pain’s under control, any symptoms are under control. We educate the families on the different medications to give because we’re not going to be there all the time to give all the things, right? So we educate, educate, educate and try to get the family really comfortable with providing care.
But of course, we can come at 2:00 in the morning, 4:00 in the morning, on Christmas Day, we can come. We’re always available to help and aid. And if the family doesn’t know what to do, of course, definitely call us. But we we do check vitals and stuff. I never focus on that. I always tell the families do not worry about numbers.
In my opinion, I don’t think we even need to check vitals, but we still do and just go by how the person looks, how the person looks, let the patient or their loved one be the guide. If they’re clean, if they’re safe, if they’re comfortable, we’re good. If they’re not, that’s where we need to step in and help. But if they are, you’ve done a good job.
Explaining end of life events
The Patient Story: Julie, you initially had this little viral stuff happen because I think you talked about things that people were really curious about through your experience in hospice. There were a couple of different phenomena that you had explained.
So two in particular, we’ll start one with the medical term of terminal lucidity. But actually what you describe it as is way more easy to understand. So if you could talk about that?
Terminal lucidity aka “The Surge” or “The Rally”
Julie McFadden: I used to call it the surge and then other people on TikTok were like, ‘the rally.’ So the rally, the surge, terminal lucidity happens in about one third of hospice patients, or really one third of ICU patients, anyone nearing the end of life. One third of the patients will experience this.
I try to educate people up front about it so we can kind of embrace it and enjoy that little burst of energy. So how it looks is and it’s very specific because people will think things are the rally or the surge and to me, they’re not. So it’s very specific. It’s like the person is looking very close to death.
So I’d say a few days before death, they’re sleeping all the time. They’re not eating, sleeping, sleeping, sleeping. And it’s usually like so-and-so is not doing well, right? And then suddenly so-and-so has this burst of energy and it can vary in energy.
But sometimes that looks like they’re walking, they’re talking. They’re like their sarcastic selves again. Whatever their personality is, it kind of comes back, and they’re hungry and they’ll eat and they’ll have a really good day.
That’s the moment where I want families to embrace it and enjoy it and just be present in that moment because usually what happens after that is they will die, right? Usually right away. I mean, the burst of energy can happen for a few hours, maybe a couple of days, and then they die, and it’s pretty sudden.
People are still prepared for it because they have been dying, they’re on the death journey. But it’s kind of like, whoa, because they had such good days, right?
So I always try to educate before it happens so when it’s happening, I’m not this bearer of bad news. However, I do that because I just think education is so important at this time. So that’s very specific. It doesn’t drag on for weeks.
If someone’s doing well for weeks, that’s not the rally or the surge. It’s an abrupt burst. And then they die. It’s very distinct looking.
The Patient Story: I really appreciate that you try and tell families ahead of time because I think so much of this is expectation setting, right? We can’t know what’s going to happen. But if you have this experience where you’re like, hey, look, this could just be the rally or surge, it at least allows them to say, Hey, this is this is temporary, but let’s enjoy it as opposed to, oh my gosh, they’re going to make it so and then the big letdown after, of course. So I appreciate that one.
The Patient Story: Another one you had talked about, Julie was seeing spirits, which that topic, I think just everyone’s like, what happens after life? Without answering that, no one can right now, what are you seeing patients do in terms of, oh, I see this, I see that.
Julie McFadden: I always preface this, too, because those videos always go viral, right? I’ve spoken about it a few times and always millions of people watch it because it’s fascinating and with millions of views come tons of comments, right? So it never fails that people think I, or any health care worker who’s saying this, is trying to make people believe something or like, look, there’s evidence..
And that is not that. So I always want to be clear, that is not what I’m trying to do.
What I think is fascinating is that this happens and it happens. I said the rally happened in a third of our patients. That’s actually like clinically studied so we know.
I don’t know if this is actually clinically studied, but I know that it happens much more than the rally. I’m talking like countless, countless, countless, countless times. And it’s actually put into our educational books. This is not something that we’re like, woo woo trying to make you feel better.
This is like we’re trying to educate you so you know when you see this – one, it’s normal and it’s okay as long as your loved ones are not agitated and two, it’s a good indicator of when they’re going to die because it usually happens about a month before someone dies.
So sometimes on people’s deathbed, we’ll say they see somebody and I love that, too. And I call it visioning. It’s still visioning. But it’s a real indicator when someone starts saying to me, you know, my dad came to me last night and said, he’s coming to get me, or both my parents came and they sat next to my bed and said I’m coming home soon.
I mean, this happens countless (times). I can’t even remember how many, this happens with almost all of my patients and not with just me. This is not just me, I’m not unique. This happens to tons of (people). Anyone working at end of life would tell you this, and that usually indicates to me, okay, this patient probably has about a month left, usually about three to four weeks out.
I know what ICU psychosis looks like, I know what delusions look like, I know what delirium looks like. This is not it. This is a very specific thing where, and I always say relatives, but really, I mean loved ones, because some people will write in like, I don’t want to see my relatives, I don’t want to see my dead relatives.
I want to see my best friend from childhood or whatever. And that’s usually what happens. It’s usually someone. It’s always comforting. It’s someone they loved. It’s a pet, it’s a grandma, it’s someone that’s warm and fuzzy to them, right?
Sometimes they say angels, sometimes they say whatever religion they are, Jesus or I see Archangel, you know, something very specific. It just depends on the person. And pets are definitely seen, as well.
And to me, the difference really quick between that and like delirium or some kind of psychosis going on is agitation. When it’s not the visioning, there’s usually some kind of severe confusion and restlessness and agitation that comes along with it. So this is very specific where it’s clear. It’s comforting. And we don’t know why, but it happens all the time.
When does the ‘visioning’ happen?
The Patient Story: Is it like in the form of a dream or is it they’re awake? And what does that look like for some of these, for most of these?
Julie McFadden: It depends. I have heard people say my parents came to me in a dream last night, so dreaming definitely is a thing. But it’s mostly they actually see them. They can tell, the people who are seeing the unseen, can tell and know that this is not what everyone else is seeing.
Every once in a while, they’re like, you don’t see Matty, he’s right there. And people will be like, no, or they’ll just be like, okay, you know? But they usually are seeing them. However, they’re aware that no one else is.
So they’re usually very lucid and kind of like, what the heck’s happening? But they’re not scared. They’re more just like almost all embarrassed to tell me, I keep seeing my brother. He keeps coming in here. Not a dream, they see them. So who knows?
When the patient stops eating and drinking
The Patient Story: There are a couple more things before we wrap it. I do want to get to which are two big topics you were saying that people have – family members, caregivers. One is when people are in hospice, they might see their loved one start to eat less, drink less, and they’re nervous about that. But you’re saying that’s part of the process.
Julie McFadden: Yes, yes, it’s part of the process, and it’s like when I first started my TikTok channel, there were a few things that I had to get out and that was one of them. I was like, people need to know this because it’s not intuitive. We want to feed, feed, feed, help, help help.
And that is normally how our bodies work, right? But when you are dying, our bodies are shutting down. Our bodies are telling us no more. We’re done here and our bodies know, truly, this is a biological thing, so I’m not just saying this.
Our bodies know what’s going on. And the more we listen to that, the better. When I say, the better, you’ll feel, I just mean the better you’ll feel and the more peaceful you’ll die. So it’s not like you’re going to stay alive, right?
We know this already, but if we listen to our bodies, it’ll be a more peaceful journey for the most part. So at the end of life, our bodies are shutting down and we don’t want nutrition and we don’t want water for the most part. Sometimes we do, so listen to your body. If your body is saying ‘thirsty,’ drink, you know, and if you can.
But if it’s not, listen to the body. And I’m telling you 10 out of 10 every time it’s better. Every time you don’t do that and someone tries to put a feeding tube or they insist on IV hydration, 10 out of 10 times it’s not better. Every time. If they’re truly end of life. If they’re not end of life, it could help. Our bodies are intuitive and they know.
The Patient Story: I can imagine that when people are maybe suggesting or encouraging that their loved ones continue to eat or drink, it’s almost more of an emotional I want them to continue fighting for this right? So that’s good to know.
Julie McFadden: This is what I always tell the loved ones who are like, I know but it will help with whatever with, you know, make them feel better. It’s like it actually won’t. So let’s just say we could get them to eat. It will not do what it’s supposed to do because the body is shutting down.
It won’t. So even if you could get them to eat, it’s still not going to do what you want it to do. So just spend this time with your loved one and let them do what they want. And try to relax if you can.
The Patient Story: Listen to them, they’re listening to their bodies.
Julie McFadden: Listen to them.
Is dying painful?
The Patient Story: Then the last one, which I think is really a big one, is talking about death pain. People are afraid of.. do you feel pain when you die? All these kinds of things? Obviously, you just you have your experience to draw from, and that’s what we’re asking. So what has your experience shown you?
Julie McFadden: My experience showed me that diseases can definitely cause pain, so I don’t want to sit here and paint this beautiful picture of death is never painful. Dying, the dying process truly doesn’t cause pain. It doesn’t cause pain to not drink. It doesn’t cause pain to not eat, if you’re dying. Hunger pains are different if you’re not dying.
So is dehydration if you’re not dying, if you are dying, different. But there are diseases that can cause pain. So whenever I say this never fails, people are angry and people can get angry because it’s like, hey, I witnessed my mom and she was in tons of pain when she was dying.
So my point is dying isn’t painful, but the disease you’re dying from can be. And we can help with that. We can help with those different pains and we can be super aggressive on hospice with pain management. And we are. To me, dying is not painful, but the disease you’re dying from can be and we can help manage that the best we can.
The role of pain medication
The Patient Story: And actually, that’s a great way to end is one more note is pain medication is a big part of this, and people are really nervous about how much pain medication has been given to their loved one. So what do you say to those family members or those caregivers?
Julie McFadden: It can be a complicated question. This is very generalized, so in general, people come on to hospice one of two ways. One, already on a bunch of pain medicine. So once they’re already on it, we’re going to keep that. And if it’s not managed, we’re going to up it all. We’re not going to start them at ground zero because that makes no sense.
Now, a lot of people don’t come on with any pain medicine, and that’s okay, too. Some people go their whole entire hospice journey, no pain meds. So that’s definitely a thing. If we do give medicine for pain or for shortness of breath, because we also use liquid morphine for shortness of breath or something called air hunger, and I think it’s mostly the opioid naive people that when their loved one hasn’t been getting a lot of pain medicine and then suddenly they do, and then they die, they associate the pain medicine with death. Really, one it has been clinically proven that morphine does not hasten death. It truly just helps people die more peacefully, not more quickly
Two, the amount we’re actually giving. So even though it’s the word morphine, the amount we’re giving is truly minute for people who haven’t been having pain, right? It’s like what you take for a toothache.
It’s very, very small. It’s just enough to help relax the diaphragm and relax that person’s central nervous system so they can just relax. And a lot of times the body is fighting, not fighting, but the body is resisting. And then you give it morphine and the body stops resisting and the person can let go.
So then people really associate oh my god, I gave my loved one morphine and they died. I killed them because I gave them morphine. I can see the correlation, especially when you love that person. But it’s just not true.
This is the last thing I’ll say, because it’s a little bit of my soapbox if you couldn’t tell. To die from something like that, you would have to give enough to have someone go into what we call a respiratory arrest. That’s what happens when someone like ODs on drugs because that’s what they’re associating all of this with – a respiratory arrest.
That means you fully stop breathing, so then everything stops your heart. You stop breathing. So then your heart stops and then you overdose. In order to do that we would have to give an obscene amount of drugs to somebody for that to happen. So we’re not doing that ever.
The amount we’re giving is like droplets of pain medicine, for the most part. Now there are some people that are on an obscene amount of pain medicine, but they have been on that for a long time and they need that to control and manage their pain. That’s also not going to overdose them.
But it’s just a common misconception. It’s just going to take a lot, a lot of education over the years to help reduce the stigma of managing pain, and hospice is great at doing it. I know a lot of patients that have not had their pain managed and they come on hospice and they can live again because we’re really aggressive with helping their pain get under control.
The Patient Story: Because that’s the focus. And so that’s what the dedication is. Julie, I really appreciate you coming on and spending all this time because, you talk about stigma and I think there needs to be a lot more conversation so that people understand what hospice is and when it’s right for them or their loved one. So thank you so much.
Julie McFadden: Thank you. Thank you for giving me a platform to educate if I can. It’s great. Thank you.