Hospice Myths: What Hospice Nurses Wish People Understood about Hospice

From hastening death, to morphine use, there are many stigmas that hospice care has associated with it. In this episode of Death is My Life, I help debunk these myths and explain the realities. 

Transcript

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Hello, my friends. Welcome back to Death is My Life podcast. I know it's been a while since I've had an episode for you, and I'm sorry I got too many things on my plate all at the same time, and it's taken a lot of my attention and brain power. So it's been hard to have the creativity to come up with episodes. But I haven't forgotten about it, and this isn't something that's going to end soon. I am lining up some awesome guests, some really good speakers to listen to and talk with, with a lot of interesting things to say and a lot of different insights, a lot of different topics. So we have something to look forward to. I just need to nail them down and get them on the books. So it would be really helpful if anybody has something you want me to talk about or research or a certain guest, if you want to be a guest, anything like that, please just email me at death is my life podcast at gmail.com. But for today, I thought it'd be a good one to get out hospice myths, okay? What hospice nurses wish families knew? What hospice is, what it isn't. So I have a list here and we'll just go down the list, okay? So of course, one of the older concepts that people think, thought, it's kind of going away now, but is if I sign up for hospice, I'm going to die. Well the it's kind of the opposite, right? It's death is getting closer, so hospice gets involved. The body is doing what the body is doing with or without hospice. So the patient can wait until the last minute, but then it's a scramble to get everything ready. The patient might suffer for longer without those services in place sooner. So getting into hospice early doesn't hasten death. It gives the team more time to help the patient establish and reach end-of-life goals. Giving morphine at the hospice prescribed doses does not hasten death. It promotes comfort. And actually, morphine can also, in addition to pain, it can also be used to alleviate respiratory distress. So that is something a lot of people don't know, but it's frequently prescribed for shortness of breath as well as pain. And it's really effective. So if it's used appropriately, then it can be extremely beneficial. And at the small doses that are prescribed initially, a lot of the times it doesn't even cause over-sedation. If the person's in so much pain or so much distress breathing, then that's almost worse than being a little bit tired or loopy. But I've seen, I haven't even seen that a lot. I've seen a lot of people, you know, the pain or the shortness of breath is interfering with their life more than the side effects of the morphine. And everybody's different, of course. So I'm just speaking generally here. So vital signs. I know that in our current healthcare system, we are so conditioned to getting vital signs at every appointment, every couple hours while you're in the hospital. Vital signs, vital signs, everything's about vital signs. And while on hospice, we do check them occasionally or as needed upon admission. And the numbers don't dictate patient care. They're just arbitrary numbers that can be helpful if we're monitoring a certain thing. Like if I suspect somebody has low blood pressure, but they're on blood pressure medications, we will monitor the blood pressure so we can advocate to get them off of the blood pressure medication. Something like that. Or temperature is something I do use a lot in addition to other symptoms to look for an infection, or if the person's actually actively dying, sometimes they'll get a raise in their temperature for a little bit and respiration rate. So those are ones that I kind of more commonly check, the respiratory rate, because that can be indicative of pain or shortness of breath. But in general, sometimes, you know, people will ask, like, oh, okay, well, how come some nurses check our vital signs and some don't? Well, they're not necessary every visit because we're not going to do anything about them if there's not a symptom associated with them, I guess. So observable signs and patient-reported symptoms are more of the drivers of action than just the numbers. So that's why you may not get your vitals checked every single visit. And a lot of people that's kind of hard to withdraw from, but it's okay. It's okay. And we can we can always check anybody's vital signs if somebody requests it. But that's the reason it's not necessary because we're looking at the patient, we're looking at if their breathing is even or if it looks like it's distressed, even without counting the respirations, you can tell distressed breathing from watching the person or from them reporting it. I'm struggling to breathe. Okay, so confusion and disorientation can be a sign of a UTI in older adults. So a UTI is a urinary tract infection, and sometimes like just a super quick new onset of confusion or disorientation where the patient didn't have that before can indicate a UTI. So if that's the case, and some people want to treat with antibiotics still on hospice, and some don't. So when the person does, then we could look for other signs, either a fever, burning sensation when they're urinating, difficulty urinating, cloudy urine, incontinence, increased feelings of frequency. And these are kind of things that we'll look for if a family member reports, oh, this person's like newly confused, they used to be stable, all of a sudden they're falling a lot. We will look to see if it's an infection. Okay, agitation and restlessness. So moving around a lot, looking like you know, shifting, trying to push your covers on, covers off, or being aggressive where there used to not be any aggression, can be signs of pain in patients who have cognitive impairment. So, like dementia. If a dementia patient is pretty far along, they might not be able to express, even if they can speak, they might not be able to say, I am having pain. So their body will look like they're agitated up and down and up and down, if they can walk still, if they can't walk, squirming around in bed a lot, kicking their legs a lot, trying to get up, even if they can't, the agitation, any of those things could be a sign of pain. So we want to look for those kinds of signs and treat them accordingly. Like we talked about the morphine in a small dose. If that, you know, I mean, if you try a small dose of morphine and it stops those symptoms in the person who cannot report pain accurately, then you know that agitation was from pain. So eating and drinking, this is another thing, along with the vital signs that we're like so conditioned to think, okay, this is normal, this person has to eat. If this person just can continue to eat and continue to get their calories, they'll be okay. While at the point in life that they're at when they come onto hospice, typically, first of all, they're not exerting a lot of calories. So they're needing to intake fewer calories. And a lot of people are eating and drinking just fine, but as you start to notice in your loved one that their appetite and thirst are not as prevalent as they used to be, that's normal. We want to continue to offer food and usually feed them whatever they want or whatever they ask for as long as they're safe to swallow. A lot of the times, as the people are nearing the final stages, they'll ask for something, you know. Oh, I'm really craving pizza. And then you'll go out and make a pizza or get a pizza, and then they'll have two bites. And that's exactly what you should do. Just give them whatever they want and don't force anything on them. If you force food, it can actually cause increased distress, especially on somebody with dementia. If they're not eating, they don't understand why something's being put in their mouth. If they're really end of life, and they're being forced to eat, they could choke and aspirate. So another thing is that the hearing and the spirit remain intact even when someone appears to be non-responsive. It's okay to share stories, reminisce, cry, or even laugh and have somewhat joyful experience during this time. Of course, it's sad, but there's also going to be possibly laughter as you're reminiscing funny stories, or you know, good things can happen concurrently while bad things are happening. And so to honor that person's spirit, you know, most likely they want you to be happy and want you to continue with your life. So go ahead and do that. I remember when my grandpa was dying, I didn't know what to do, and I was young, so I just read him a book and he couldn't open his eyes and he couldn't talk, but I could see his eyelids fluttering like he wanted to open his eyes, and he was leaning his head toward me like listening. So he really, I think, appreciated that effort. And so, whatever your loved one liked, if they liked a certain music, play that, or a certain show, or baseball games, you know, continue those things. Don't talk about them as if they're dead while they're still alive and in the dying process. And honestly, I don't know how long the spirit stays around. So even after the person has passed away, I still talk to them if I'm changing them up or dressing them. I just think it's the most respectful thing to do to still continue to announce what I'm doing. I know that their body is dead, but I I don't know. That's just me. Okay, and sleeping. So increased sleepiness does not indicate suffering. Usually the opposite. Usually what we see is if somebody's asleep, they're comfortable. Unless, you know, they're moaning and groaning and shifting around a lot while they appear to be sleeping. But if they're laying still quietly and appear sleeping, then that's a state of comfort. And I would encourage them to just let them be. So, you know, if I have a family member saying, hey, well, he's sleeping until noon now, and he used to get up at 8 a.m. So I've been waking him up because that's what we need to do, so he doesn't miss the whole day. Well, he probably needs the increased sleep and he's comfortable. So, unless the patient specifically asks to be woken up at a certain time or for a certain event or something, generally just let them sleep. Their body is going through a lot. Likely there's organ failure and things are shutting down. And so increased sleep is just, you know, another natural sign, and it's generally a healthy sign of comfort. So the hospice team doesn't care only for the patient, but also for the family as well, and this includes emotional support, teaching cares of the patient as the patient's needs increase. And even bereavement after the death of the patient. Here's another myth that I get a lot. So hospice does not oh, sorry, that was a big truck that just went by, if you can hear that. Hospice does not replace the need for caregiving. So sometimes when we get there, families are kind of surprised to find out that we're not staying. Hospice, the team checks in a few times a week, more or less, depending on how the patient is doing. And generally, there's you know, a nurse, maybe a CNA, a social worker, spiritual care support person. And we go into the home and see what needs to be done, look at the overall picture, help with medications if anybody has any questions. I'm refilling medications, supplies, uh, education, emotional support, but we don't stay there and provide all the caregiving. So family members or facilities, somebody has to be there for the day-to-day care. Sometimes we have patients who are still doing their own cares for a while, and that's fine, and we'll help support that person, and we'll help support that person in finding appropriate caregiving when the time comes. However, those are outside agencies and not caregiving. I have, however, heard that like in California, maybe there are some hospice facilities where people stay long-term for hospice care. I don't think we have any in Oregon, so I don't know about other states. Having said that, we do have a short-term hospice house where people can go if they're not able to get comfortable in the home, but they don't want to go to the hospital still. So they want to stay in hospice, but their symptoms are just out of control. Then we go to hospice house where there's a full-time staff and a pharmacy in-house. So they can do a little bit more than we can in the home for those symptoms, get them stabilized and then send them home. Or sometimes they do pass away there. That's also a place where Medicare allows them to go for a five-day respite or to a skilled nursing or a hospital. But day-to-day hospice does not replace the need for caregiving. All right, so caregivers, it's important to take care of yourself during and after your loved one's dying process. It does not make you a bad person to leave that person alone for a little bit or in somebody else's care if they're not safe to be alone. It doesn't make you a bad person to go grocery shopping or go exercise or anything that you need to do, it's important that you do that. It actually enhances your ability to provide physical and emotional care for that person if you're taking care of yourself. Like they tell you on the airplane, put your oxygen mask on first and then help others put theirs on. And that's for a reason, because you are the caregiver. If you're not fit, then that person's less likely to be taken care of appropriately. Or you can get burnt out, which is real easy to do, especially with people who are needing a lot of support for a long time. So taking the time out to take care of yourself will really improve the longevity of your ability to be a caregiver. Okay. A common thing we see is that many patients will actually wait for a loved one to leave the room to die. I think my mom was just telling me that's like her her ongoing joke or theme that, you know, everybody dies when she leaves the room. She's like a caregiving person. She's really trying to be there close or supportive when a lot of her family members have died. I think one of her brothers, both her parents, probably some other people. And yeah, you're you're doting on your family member, your loved one while they're dying so hard. And then, oh, my mom went for a walk for 15 minutes or less, and that's the exact time that grandma died. So that's really common and not to feel guilty for if you are that person that steps out of the room when your loved one dies. You know, it's up to them. So please just don't feel guilty after that. Just know that's the thing. And if somebody's holding on, holding on, holding on, you're like, I haven't left their side for three days, and I just don't know why they can't feel comfortable passing on, maybe they just need a little privacy. You step out for 15 minutes, and that might help usher them along. Okay, at time of death, organ law doesn't require hospice staff to pronounce the death. So if you and your family are private, or if you're just exhausted and burnt out, or whatever reason you may not may have for not wanting a nurse visit at the time of death, you have every right to decline that visit. It happens frequently where the family is like, oh, we were expecting this, we don't really need a visit, just go ahead and call the funeral home. So that's okay. It's also okay to say, yes, I do need a visit, I don't know what I'm doing, or I do know what I'm doing, I just need support. So it's totally up to the person, the family, you guys, and your needs at the time that the patient passes. It's also not a requirement when somebody's established with hospice. 911 does not need to be called out at the time of death. The family calls hospice, and it's classified as an expected death. So hospice can take care of that death without police or fire department. I have been present a few times when the family had called 911. These are all various circumstances, and it happens, and we work with law enforcement and and we just get it taken care of. Most people prefer not to have that. It's a little less peaceful, but some people feel like they need that support at the time. It's it's more rare, I will say. I've only, you know, in the time I've been doing this, I've only had to go with have had 911. On scene when I got to a death visit, like twice. And they were both called by family before I got there. But we would hope that we could prepare the family better. Not that they weren't prepared in these situations. It's just, you know, emotions. Emotions run high. Speaking of emotions, family conflicts can heighten during and after the dying process. So it's really important to put your differences aside and keep all interactions patient-focused at this time to maintain a peaceful environment for this person. A lot of the times the dying person is accepting of their own death but worries about the people that they'll be leaving behind. So if there's all these tumultuous relationships going on and all this drama, then that's going to actually make the dying process harder for the person who's dying. Which is why having an advanced directive, a will, funeral home planning, all these things that the person can do ahead of time before they're actively dying. It's horrible to have to sit down and think about this stuff and our own mortality, but at the same time, it really saves a lot of stress down the road for people who don't have these things in place, and the family is having to scramble and figure it all out at or after the time of death. It's much harder and more complicated. So do your family a favor and fill out all the appropriate paperwork beforehand. The pulse, if you're not sure what that is, the pulse is the physician order for life-sustaining treatment. I'm just speaking for Oregon again. That's like if the person wants chest compressions or not, if they don't have the pulse, then they're gonna get chest compressions unless family's there to advocate and say no, they're in hospice and they didn't want this. And CPR is aggressive, so you know, people have to push down on the sternum quite hard to reach the heart in order to pump it. So if we're dealing with a hospice patient who already has a terminal diagnosis, is most likely not in the most healthiest condition, then it could break bones and the life you would come back to after CPR could be pretty pretty uncomfortable. So while it's not necessary for a patient to be a do not resuscitate, a lot of them are, and they fill out the post, which is a form to protect them in case 911 gets called, in case they die, in case they're not able to speak for themselves, then EMS will not be doing CPR. Okay, and last but not least, hospice is about living with as much quality of life as possible. It's not just about dying.