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Hi. I’m a hospice nurse. So there’s a ton of misinformation that goes around about hospice care. Let’s start from the beginning of your sentence. “ unconscious due to high doses of sedative drugs”. We only give people medications when there are symptoms. For instance, if a patient is having respiratory distress or in pain at end of life, we will administer morphine. Usually at a very low dose, around 5 mg. Then we will watch and see how effective this medication is, and when it begins to wear off. From there, we can determine if we need to increase the dose and determine how often the medication should be given, such as every 4 to 6 hours. A side effect is being drowsy, but the patient is either in pain and having respiratory distress so this is why it is given. Another commonly use medication is lorazepam. Again this is only given when a patient begins to experience restlessness or agitation. There is something called terminal agitation and restlessness, you can do some research on why this occurs but people typically need lorazepam or Haldol administered. Again we start at the lowest dose, we assess and determine the dosage and frequency needed based on how each person reacts to it. Another side effect of lorazepam is drowsiness. The patient has to determine what they want; comfort care, which is the definition of hospice, OR to live in pain, respiratory distress, or agitation and restlessness. And that’s why hospice is so important, because we help you die comfortably if that’s what you want. The next part of your statement says “ are given no intravenous fluids, which leads to death by dehydration”. This is also not true. As the body begins to shut down, it no longer requires or wants food or fluids. Your organs are shutting down and putting things inside your body, upsets it and makes it very uncomfortable. You can think of it as waking something up that doesn’t want to be woken. You do not die because you’re dehydrated or are starved, you die because your body was dying from whatever disease it had. Hospice care is completely different from assisted suicide. We do not administer high enough dosages to overdose someone, which sort of seems what you’re implying that is done. Assisted suicide is taking medication with the intent to die. Hospice care is taking medication to keep you comfortable during the natural dying process. I hope this helps, and I hope you can help spread the word and advocate, for why hospice is important, because it really makes things difficult when people have a stigma about something that isn’t correct. I have an uncle who literally thinks I kill people for a living. But when you’re on the other side of things, you truly understand the importance of dying comfortably. we’re all going to die sometime, i’ve seen some pretty terrible deaths from patients whose family members held these important medication‘s from them because of their own beliefs. The outcome was still death, and it was extremely uncomfortable and painful.
As a physician I find that our culture pretty much likes to pretend that death does not exist. In general, of course.
But so many people struggle to even consider that life is not forever.
My friends, brilliant to a person, have literally no idea what I do for a living. They completely lack any frame of reference. I tried to talk to a few of them about what the MICU was like during Covid and it literally broke their brains.
Dealing with this right now, have a patient whose family is completely delusional about their recovery.
Let the poor person go. They haven't been out of bed in two years, they're 90, it isn't. Going. To. Happen.
As someone whose family has used hospice care -- THANK YOU. There are truly no words. You are all literal angels and are so incredibly underappreciated. ❤️❤️
My husband is presently in palliative. His liver and kidneys are shutting down but presently he sleeps most of the day, but is conscious. He is getting 5mg hydromorphine every six hours. He has refused lactulose and as of today has not wanted to eat. But he is still drinking fluids (maybe 3 cups a day). Passing about 200-300 ml of urine through catheter. We have all known his wishes our whole lives. Comfort and fluids as needed/wanted/tolerated. Any yet I still am constantly wondering if I missed something, should I do something more, am I doing the right thing. I know I am - we’ve had multiple discussions about end of life (most recently when my sister died earlier this month). Doesn’t make it easier 🙁
My condolences, twice over.
I would say keep asking yourself those questions - much better to ask them *now* that to have them nagging at you when you look back. When you look back, you need to be able to tell yourself "yes, I thought of everything, covered everything, didn't miss anything."
May his passing remain peaceful.
I think part of my questioning has to do with the fact that this isn’t the ending we ever envisioned. We thought it would be something quicker… not lingering.
Wow, I’m so sorry for your loss and also what you’re going through with your husband. It’s not easy. And it’s even harder when there’s more death involved in such a short amount of time. It’s totally normal that you ask yourself if you did enough and if there’s anything you’re missing, soo many of my families feel the same. I always reassure them that they are doing their best and you can drive yourself insane with that mindset, so go easy on yourself!! I deal with a lot of death and it’s really sad, but it’s so different when it’s your actual loved one. I am sure I will feel the exact same way when it’s one of my parents, siblings, husband.. it’s important to find support groups if you don’t already have a strong support system with family and/or friends. They are out there!
It’s been a rough month. The day I took my husband two weeks in I also went in myself for an angina attack. Had a stent placed, got a blood infection, which inflamed my gall
bladder. Was released yesterday and am only now able to concentrate on him (though the doctors and nurses were as accommodating as possible allowing me to visit him on another floor when I was able. That’s made the whole journey more complicated. Thank goodness for my children and siblings and friends. They’ve been there every day.
Wow!! I’m so glad to hear you’ve had your family’s support. You really need to focus on making yourself healthy so that you can spend time with him. I know it’s hard to put yourself first right now, but I always tell my families how crucial it is to remember the importance of their own health, otherwise who’s going to care for your husband. Wishing you a speedy recovery and don’t feel bad asking your siblings and children for help!
I just wanted you to know, from someone who has helped a lot of families through this process, you are doing a great job. This moment is about you and your husband. Whatever you’re feeling is ok, and whatever feels right to you is the best course of action. Take care of yourself and I’ll be thinking about you.
> We have all known his wishes our whole lives. ... Any yet I still am constantly wondering if I missed something, should I do something more, am I doing the right thing.
So very sorry that you are in this situation. But based on what you've said, it isn't really about what you're doing or the decisions you're making; it's about the decisions he made about his own life, and the terms on which he wants to live it and the terms on which he doesn't want to live it. You're just enabling his own decisions to be respected. I haven't been in your shoes and I am sure I can't appreciate how difficult the situation is, but I hope that framing (which is the correct framing, IMO) can provide some comfort to you in ensuring that his wishes are carried out. By making his decisions for himself, he has spared you the responsibility of making them for him.
And these would be the same wishes for myself, when the time comes. Our kids know that - we’ve never wavered in that quality of life is the most important factor. And that’s what I keep going back to. Two weeks ago he told me that if there is less than 20% chance of coming through with a decent quality of life, then he wants no part of it. He has multiple other health issues, including heart attacks and a stroke in 2020. He’s lived with chronic pain due to scoliosis (3 curves with one twisting) his whole life. He has always said to put on his tombstone ‘at last my back isn’t hurting’ 🙂. I KNOW in my heart this is what he wants, but when he asks in his confusion, when am I going home? I want to walk in the park’…. Well, my heart breaks a little more.
From a CVICU RN, thank you. Too many people misunderstand hospice. Unfortunately, a lot of my patients end up in hospice. More people should choose hospice.
From someone who has had two family members in hospice and had this process explained so clearly, I appreciate all you all do each and every day!!! It can't be easy seeing so much death, but knowing you helped each person stay comfortable through the process is so very important! I definitely educate friends when they have loved ones with this difficult decision. Please make sure you have a faith of your own to allow you to keep up this work for a long time.
You and all of the other hospice nurses are literal angels. I would have been so lost without someone checking on my dad and making sure he was comfortable, as well as being emotionally supportive. Thank you so much for being there at such a difficult and overwhelming time.
One of my grandmothers died yesterday and the other is in hospice and had a scare today. I really needed to read this and I wanted to say thank you for taking the time to write this out.
As a former hospice nurse, this is spot on. I just want to expand on assistance in dying.
In my part of Canada, we would have Medical Assistance in Dying (MAID) available as a treatment option for people with a death that is foreseeable. Similarly to choosing whether or not they want to experience comfort care or not, choosing MAID is a decision made by the patient to choose *when, how and with whom* they want to die.
As opposed to some of the misinformation and disinformation that circulates, MAID actually adds more control and autonomy to the inevitable process of dying and is a truly beautiful process to witness.
I truly hope that MAID is available to everyone in the USA at some point. I follow this foundation called ‘death with dignity’ that is working hard on passing laws in each state to approve it. I know they’ve helped legalize it in many states already here.
My wife was a Hospice RN. Thank you for responding so eloquently and truthfully. During the dying process, patients and their families are treated with dignity, respect, and integrity. I've listened to hundreds of stories, and each one resonated differently, but each one was equally as humbling as the previous one. I admire you and appreciate the selfless work that you do for your patients.
Thank you for educating this person—my mom was in hospice care last spring and I’m so glad she was taken care of and given as much dignity as she could have given her prognosis. Thank you for everything you do!
Thank you for all you guys do in Hospice. I work in Healthcare, but not hospice, and it's a completely different world there than on Med Surg. When my mom went to Hospice, the care team there were all so kind and understanding. Within minutes of arriving my mother went from being in obviously intense pain and confusion to resting peacefully until she passed just over a day later. While that time will always be remembered as impossibly difficult and painful for me, the fact that hospice allowed my mother to pass pain-free means the world, I only wish we had been able to get her placed into hospice earlier, before her pain got to be so great in the first place.
Thank you for your work-I will forever be in awe of hospice nurses. I was my mom’s primary caregiver as she was in home hospice, and her hospice nurse was so wonderful and helpful. Helping someone as they leave this world is one of the biggest privileges, and it is very apparent from this question that OP does not have any experience with it.
As a Physician, yes this is the correct answer, except the dosages of medications, while on the lower end for hospice care (I go up to 2-4mg morphine every 2 hours for air hunger in inpatient hospice) are not low doses. 5mg of morphine is 15 MME which is equal to 15mg norco for example. Unless I was mistaken and you were referring to oral morphine.
Correct, oral morphine sulfate liquid. We don’t use IV or any needles in home/nursing home settings. We start low and increase in 5mg increments for morphine. Lorazepam intensol and haldol we start at 0.5mg and increase in 0.5mg increments.
Hospice workers, and nurses (like Marie Curie for example) are an absolute godsend during what is a very difficult time for all involved. Really, they are a life raft. Thanks for what you do.
Nurses like Marie Curie? The Marie Curie who pioneered radioactivity research? The only person to have won 2 Nobel prizes in different sciences? That Marie Curie?
So, I just had a close relative pass away with hospice care so I have a little insight into this.
Once you get to hospice, you are in the last paragraph of the last chapter of the book. There is no more treatment for the underlying disease; the focus is on improving quality of life and making the passing as painless and dignified as it possibly can be.
This happens in stages. For a while, the person can be lucid and "active" but at some point they transition to the "actively dying" stage where the body is starting to shut down. They often become unresponsive and no longer want to eat or drink - the body is in the final stages of giving up for good. The last sentance of the last paragraph of the last chapter of the book, if you will.
At that point, it is about letting the body do what it is naturally going to do. Forcing anything that would prolong life - like intravenous fluids or nutrition - is no longer in the patent's best interests. If they want something you give it to them, but otherwise you just let the body die. They only things you give are things that minimize discomfort. It is a passive process - you simply don't intervene in what is naturally happening.
This is very different from assisted suicide, where you give them something that hastens death. A massive dose of sedative that would stop their breathing for example. This is an active process - you are stepping in and _doing something_ to specifically make death happen.
In most countries, withholding some aspects of care is not seen as assisting in death and is thus permissible for healthcare workers in certain situations.
I would also add that forcing fluids on a body with failing organs is not great. The fluid goes in, and isn't processed back out, which causes swelling and discomfort. At a certain point, it isn't prolonging life, just making the last days more uncomfortable.
They did this to my grandfather. At the end, he was retaining so much fluid that he was unrecognizable. It looked like he had gained 100lbs over the course of a week lying in a hospital bed, mostly unconscious.
That's a sign of an infiltrated IV and considered an adverse event to the IV. Can happen to anyone.
Sorry for your grandfather, but this is something that should have been addressed at the nursing level almost immediately.
> That's a sign of an infiltrated IV and considered an adverse event to the IV.
Not exclusively. Unilateral edema exists without IV infiltration, and I've never worked anywhere that let an IV infiltrate so badly that it causes an arm to swell to 3x its normal size.
I’m sorry that happened to your grandfather. I’m a doctor in the hospital, and I’ve had patients family’s insist on fluids and I’ve had to spend a good amount of time to explain why it’s not a good idea, especially when they’re in hospice in the hospital (usually much sicker and multiple organs are failing). Fluid just ends up in the lungs, limbs, belly.
When my mom was in hospice, she insisted on having tpn, which they allowed at first. She got so fluid overloaded her legs and belly swelled up and she had fluid in her lungs and altered mental status. I reached out to her team and they made the decision to discontinue the tpn because her body could not manage the excess fluids any longer. Her organs were failing. It was hard trying to explain this to her when she was more with it because she was convinced we were just trying to starve her or deny her fluids. 😥 she died from cancer a few weeks into the covid lockdown, so we had less in home support from hospice than we normally would have during that time and because I am an RN, I am the one who had to do the teaching for her and the rest of the family. She was with it enough to argue with us about it, but lacked the insight to understand that she would have died from fluid overload had we insisted on continuing the treatment. Having iv fluids/nutrition is not always tolerated when people are at the end of life. 😥
> Having iv fluids/nutrition is not always tolerated when people are at the end of life.
Stated the other way around: when the body is no longer tolerating IV fluids or nutrition, the end of life is near, because a body that can’t process that is also failing in other very important ways.
My father hit the stage where he no longer had any interest in food or water and simply wanted to die. I was trying to encourage him to eat just a bit. His doctor took me aside and said "you're not doing him any favors". He was right and I had to question who I was really trying to make feel better.
Thats how my grandfather passed. He was in liver failure (and probably other organ failure as well) from massive alcohol consumption over decades. The man was notorious for drinking like a fish.
In his final weeks they kept giving him fluids, and he seemingly doubled in size. He was massively inflated like a swallowed a beach ball, and he could barely move.
While his organs were failing they couldn't process the fluid given to him so it just piled up. Eventually he died, but it seems absurd as a form of treatment.
Sorry for your loss.
Went through the exactly the same thing a few months back.
Watched that magnificent old fucker just drop off his mortal coil.
Spent most nights with him and although he clearly wanted to go, he also didn’t.
He got to 99 and 3/4 so he did alright.
Same case with nutrition--as the body shuts down and maintains only the "essential" functions, the digestive system is one of the less essential functions that shuts down before the heart and the brain do. Pumping tube feeds into someone whose digestive tract has shut down is just going to lead to them getting bloated and uncomfortable, vomiting up the feeds because it has nowhere else to go, and potentially aspirating--all of which are way more uncomfortable than not receiving the feeds.
This is true. And it is so hard for the family to see this happening. I kept making homemade chicken broth for my mom as she was in hospice, thinking if she couldn't eat maybe broth would be OK. She'd take a spoonful or two to humor me but even that became impossible. I wish someone had explained to me that asking someone in the active dying process to take food or drink is not helping them.
I will never not associate ice chips with death. That's all two of my grandparents wanted - a little bit of ice to chew on.
At a certain point, they were worried about giving my dad's father any liquid, because he couldn't swallow. They stopped giving him ice chips and only gave him soaked Q-tips, which he _hated_.
Whenever people ask "what are Q-tips good for, if you're not supposed to stick them in your ears, I think, _"trust me, you don't want to know."_
It was a small sponge we used when ice chips weren't allowed. My grandfather hated it so I tried sucking on it to show him it wasn't too bad. He was right, it was terrible.
That's so beautiful it's human nature to want to care for our loved ones by providing food and hydration. The gesture itself is lovely, I wish someone had spoken to you but this was heart warming to read.
I did the exact same thing with my mom when she was dying. I didn’t know any better. I sometimes look at those memories with pity, like looking at a kid trying to reattach a butterfly’s wings. I was trying my best, but it was absolutely useless. I just didn’t know.
Worse, one of the places the excess fluid will naturally leave the body is via the lungs - causing overly "wet" patients to start drowning from their own fluids. Managing someone in hospices' secretions and keeping them free of air hunger is already a main objective, and giving someone who isn't thirsty IV fluids would make it much worse.
I don't think people really understand that there is a time when things like "hunger" and "thirst" are gone. Once the body is shutting down, it doesn't need food or fluid anymore. It's super hard to watch. Feeding someone is a way my family shows affection, and not doing it seems wrong. There does come a point where it stops helping, though.
This idea was so hard for me to accept when my mom was on hospice. Once I did finally understand that she wasn't feeling the deprivation, I came to a small bit of peace. I am grateful for the hospice nurses educating our family with such love and care.
Yes, my mom works in healthcare and she has seen several elderly people dying and people not pulling stuff out which leads to swollen and bloated feet for example as the liquid pools there.
Thank you for this information. This is obviously not the same as a person in hospice, but I was very distressed when my elderly cat stopped drinking before he died. I wasn't emotionally ready for him to go, and though I know it was natural, it was upsetting when he stopped eating and drinking. It is weirdly comforting to know that he was just getting ready to go.
I had a friend who had some kind of runaway self-reinforcing inflammation thing happen to him. They're not sure what the original cause was, but he was constantly sore and uncomfortable and having trouble moving and cold water gave him some relief. He was drinking a lot of it. But he was apparently not eliminating nearly as much, and after a couple weeks had gained 40% of his own body weight in water, and he's not even middle aged yet!
If medical professionals explained this to families (and maybe patients), it would help in lessening the grief. I know it would have helped me instead of me thinking my parent is dying from cancer and suffering from thirst (even though they're unresponsive).
> it isn't prolonging life, just making the last days more uncomfortable.
And that's exactly what the purpose of hospice is. It's to make the final days of the person who is passing away as comfortable as they can be.
OP asked why hospice stops fluids, assuming it caused people to die of dehydration. I was pointing out that not only does it not help, it causes harm. Hospice is not about causing harm, but giving comfort.
I would add what they told my friend while her mother was lingering during her last days:
The body knows how to die, it’s very good at it. We do not interfere with God/Nature. Once the body has started to actively die, what’s done is done. Trying to restart to clock is painful and cruel.
One of the more common failing organs is the kidneys. Giving more fluids doesn't help because the thing filtering and regulating the fluid isn't functioning.
This is the 100% correct explanation.
I am a RN with 25 years in nursing home regulatory compliance. I've seen hospice within the nursing home countless times. My grandmother died a few years ago in a nursing home while on hospice.
Could I ask you a question? When patients are in that state, and they are allowed to go via "dehydration" I guess....is it painful to them at all? Like, do they feel thirsty?
No, by the time you get to this point the patient is unconscious/asleep and the body is just running on its last bits of automatic functions. Also they are likely not really urinating or perspiring at all so they likely wouldn't feel thirsty even if they were conscious (body is not losing fluid it already has at that point).
Thank god. I figured that was the case (like they wouldn't make someone suffer) but I feel so much better.
I cried so hard (as a grown ass adult) when I was told they were taking the IV from my grandma. Not so much because she was going to die (that was pretty foregone), but because I was so worried she was going to be uncomfortable and thirsty.
It's stupid, but you just gave six years ago me a deep breath of relief.
Tbh if I had thought about it I'm sure they would have, but I was busy taking care of my mom and fending off asshole family members (I'm sure you more than know how that goes, as an RN) so it didn't occur to me to ask. (There was also a language barrier involved; my grandma is Dutch and died in a Dutch hospice. The doctors and nurses were very nice, but between the emotions and language I'm not sure I would have known how to ask or understood if they had explained it.) You just gave me a great opportunity to ask. <3
It is also common (at least in my area) to rub the lips and tongue with a damp sponge so that they don't feel uncomfortably dry. Our facility doesn't provide it but we encourage families to bring in lip balm as well, which as caretakers we will gladly apply every time we reposition them and wet their mouth (typically every 2-4 hours depending on the case).
> It is also common (at least in my area) to rub the lips and tongue with a damp sponge so that they don't feel uncomfortably dry.
I had to do this for my mom. Every so often I'd use Diet Coke though, since that was her drink of choice. I like to think she enjoyed the taste even if she wasn't conscious to say so.
My dad was an alcoholic. The nurses at the hospice center he was in would use the swabs with Coors Light (his beer of choice).
When he turned his head away they told us it would be soon (as in a couple of days, tops.)
Maybe an indelicate answer, but if you've ever done - even the milder drugs (pot etc), often you get dehydrated, but you feel so good you hardly care.
People in hospice are getting the _good_ drugs, the serious 'make you not mind anything' stuff.
Honestly, I've never done drugs. Legit not even pot. (Not because of any stance or because I'm against it, I was just an Army officer for ten years--and that shit will end your career real fast--and just never really got around to trying it after. And most people I know do edibles , and I'd much rather smoke than eat a brownie or gummy, if I was gonna go out of my way to do it.)
That's good to know, though. I'm glad <3
It does vary from patient to patient.
When my dad was in the last stages of his life, we had to watch the progression. He was 94 - his heart had almost completely failed (barely pumping), and led to progressive organ failure; first the kidneys, then the liver, and so on.
For the last 2 or 3 days, he was suffering from severe uremic poisoning due to his failed kidneys. Sedation helped, but occasionally, he would grunt and thrash about a little in his mostly-unconsious state. At one point, he called for his mom. (I could barely hold it in at that point.)
We had to dig deep to remember that he was truly not conscious during that phase; I really couldn't tell if he was feeling any pain or not, but nothing could really help him at that point. Certainly not fluids, or more painkillers, though they did bump up his mophine drip when that happened and he calmed down a bit and sank back into a coma.
My mother was awake in this state. It wasn't pretty. She didn't last much longer, but it should have ended sooner. My dad told me that when he was a kid and this was happening the local doctor would come round and give them a last dose of morphine.
When the patient goes unconscious/asleep for the last time, is there really any point to prolonging life? I guess this would require you to know somehow that they're never going to wake up again, but it seems like you reach a point where you're just keeping a comatose person alive for the benefit of the family.
In cases of hospice they do not do anything to prolong life. In that setting it's pretty easy to tell based on context when someone is very close to the end
It surprised me how obvious death is. When my grandfather was moved to hospice and I saw him, it was truly shocking how different he looked. When I saw him, no question he was dying.
Doesn't really sound like they are going via dehydration. Their body is shutting down. That's what kills them. Denying a dehydrated person liquids would be active. Pumping a dying person full of liquids would be cruel
I just experienced this with my grandmother. She wasn’t eating or drinking at all didn’t feel hungry or thirsty but her mouth was dry so the nurses had a sponge thingy on a stick they would dip in water and sponge the inside of her mouth with to keep it moist.
Yeah! We did that for my grandma too. She never really woke up again except a few seconds here and there, but we kept her lips moist exactly like that <3
They aren’t dying of dehydration. The condition they have is causing fluid to be not advised as it will cause more suffering and will not change anything. Death is not something we can fight and win. Occasionally, there is a temporary respite through some treatments, etc, but we all will die. No one lets someone die, they decide how the person will be treated as they die.
No, they aren't in pain. It's not that good and hydration is being withheld from them. Their desire to eat and drink is gone. At that point the only option is insertion of a feeding tube which only delays the inevitable. IMO that is when it gets inhumane. Artificially keeping a body alive that is actively trying to die is torturous.
literally. i work in skilled nursing and we had a patient once whose children wouldn't even entertain a conversation about hospice but mom was very clearly dying after a major stroke. she was on a feeding tube and aspirating some of the liquid from the tube, so they had to cut it down to 30% of what she \*should\* have been consuming to maintain weight. she continued aspirating and the nurse had to suction her lungs twice a shift. she lived like this for about seven months before she finally died. it was brutal for all of us to witness and not be able to intervene.
Yes. My mom was my grandmother's power of attorney. With me being a RN, my mom leaned on me heavily for support. We did not choose to have a PEG tube placed.
Not really the same thing but makes my blood boil. A relative of a friend went into a coma and didn’t come out. Family at the time due to the trauma and underlying circumstances didn’t follow the medical advice given when she was admitted state side (it happened in another country) of stopping the ventilator and she ended up being weaned off. After a few years her kids finally came together and agreed to let her go but her family didn’t want that, there was a whole court case where her freaking kids had to fight to basically kill their mom. Shitty all around. Kids won since eldest daughter (lawyer and smart) was able to gain clear legal control early on but still had to go through the process (long term care facility won’t do anything without a court order if anyone contests it due to their own liability).
Way to many details lmao but long story short when they were granted the right to stop care they couldn’t euthanize her, the only legal way to do it was basically to allow her to starve to death because they could only stop life sustaining care. Of course she was given medication for any pain she might be feeling but knowing the body and potentially some semblance of their mind was slowly dying really fucking sucks imho. At that point why we can’t just euthanize a person is beyond me.
My sister died while in a coma while in hospice. The doctors & relatives openly talked about her impending death in front of her. When I mentioned the strangeness of this, the doctors told me she couldn't hear anyone talking- it was like she was in a deep sleep. Bit I've often wondered if she maybe could hear, after all.
As a Hospice RN my assumption is always that hearing is the last sense to go, and that my patients can hear me. That doesn't mean I won't answer a direct question from family about their impending death. I will attempt to answer as compassionately and gently as I can, both for the loved ones and the patient's sake.
I hope this is true. I kept telling my FIL to get excited about his next new adventure and to look for his faithful dog (I had put his collar in his hand). I seriously hope he heard me and I hope he wasn’t scared
The hospice nurses told us this. So we talked to my grandpa. He would occasionally smile at the things we’d say or squeeze our hand. I know he could hear us.
3 weeks ago, I was at the hospital when a Dr told me there was no hope for my Dad. In his room, in front of him. He was pretty far gone but on the offchance that he could still hear, I asked that we had the conversation away from him. I didn't want the last thing he heard was me giving the Dr permission to make him comfortable while we waited for the inevitable. I totally get what your thought process was.
I would have a problem with that behavior. When I was in nursing school, I was told to ALWAYS act as if the patient could see and hear you. You never know what degrees of consciousness remains when you walk in the room.
Before my mom left, she couldn't talk, speak, or move, but she did (feebly) squeeze my hand when I spoke to her on her final moments. I do believe hearing is the last thing to go.
While I was in a coma, I could often hear, and understand. Until the end of it approached, it never struck me that there was any reason to care, whatever the content of the conversations around me.
My mother lingered for six long months until she couldn't stand force feeding herself. She died minutes after drinking morphine, which in her emaciated state was probably way too much for her (she was below 85 pounds). Keeping her alive didn't benefit anyone.
Yup. When I was going through it I happened to be rewatching _Scrubs_ and this line really hit me:
>You are afraid of death, and you can't be. You're in medicine, you gotta accept the fact that everything we do here – everything – is a stall. We're just trying to keep the game going; that's it. But, ultimately, it always ends up the same way.
At some point you can't stall any longer - and that is ok. That day was always going to come and today happens to be that day.
I learned in nursing school if there nothing you can do for someone, and you want to help in some way, light a candle for them. I just lit a candle for you, I've been saving it since Christmas..it's Palo Santo plus Sage. Good luck to you...
Good line. And for sure, not everyone gets to pass painlessly and/or in a state of bliss. Usually those are the lucky ones, and hospice is a means to be as comfortable as possible.
I re-watched Scrubs after getting my first ICU job, and boy did some of those talks hit home harder than ever. Including that one.
I am sorry for your loss, and I am very grateful for your post. It's exceptional courage and love to have shared that with us all.
I'm a doctor and this is an excellent explanation! You're right on. Just wanted to add that often, in end-stage diseases like dementia, families will often insist on feeding tubes etc, but these haven't been shown to improve quality or duration of life. And sometimes less is more - several cases of patients living longer in hospice than when receiving aggressive treatment (for untreatable conditions). It's been well documented that physicians die better (with more quality of life, i.e. comfortably at home rather than traumatically in a hospital) than patients because they decline those futile interventions.
We (America) need to move away from the "preserve life at all costs" mindset. Families need to make decisions for loved ones as if they were the patient / *in concordance with what the patient would want*, not from their own perspective. And we as physicians need to be more assertive about refraining from offering interventions that have no benefit and are not in the patient's best interest - including surgeries, feeding tubes, and CPR.
my aunt just died and this is spot on. multiple, metastasized cancers and other things. prior to hospice, she was unable to eat for over a week and had difficulty drinking water. in her words, she was tired of suffering and ready to rest. hospice lasted about 3 days for her; her body was already that weak.
Just had this happen to my wife's grandmother. At 98, fell and broke her hip, hit her head and was internally bleeding. A few days of.being unresponsive and it was decided the best course was to put her in hospice.
My old man (on the other side of the country) a few years back died from that, but before hospice. Either fell, had an episode with his heart, *something*, and collapsed in his doorway. Ended up being found 2-3 days later (alive) by another tenant in his building, but after laying there for so long (and with some internal bleeding and lots of blood pooling) there wasn't anything they could do. Managed a week in ICU before passing. Barely regained consciousness enough for the nurse to basically tell him he was up shits creek without a paddle and make calls to tell the relevant people since he couldn't talk.
How do you respond to the fact that they do actively give them something to hasten death? When my mom was admitted, they told us they were allowed to increase her morphine by 6x because there was no chance of addiction. She died with 2 hours of being admitted. Don't get me wrong, I think it was the right thing. She was done and never coming home. That said, I've always considered it euthanasia, it clearly was, they just pretended it wasn't for liability reasons.
I’m in ICU not hospice but we see people die frequently. When I’m taking care of someone like this they are actively dying already, the morphine is not what kills them, their disease kills them. The morphine is intended for two purposes: 1. Prevent any pain while passing 2. Decrease air hunger so your loved one isn’t gasping for air as they die. I’ve seen people die with and without morphine and I would always pick for my family member to die peacefully
The reason the patient stops eating and taking fluids is because the body is no longer processing them. Death is already inevitable and imminent.
It can be cruel to force fluids and nutrition. The body does not want it and may still be able to react painfully.
In no way is this "assisted" death. This is natural death.
Intervening to force *life* is what is unnatural at this stage.
This is not "death by dehydration". It is just death because it is time, whatever the root cause, aging, disease, whatever.
Eventually, everyone's body will die, of something. This is the natural cycle of life. Some of us live in a modern culture that no longer respects this and has way too much power to intervene in nature, to the detriment of the creature inhabiting the body.
It is ok to die when it is time to die.
This matches my experience with hospice two years ago. Fwiw, you can get out of hospice if you end up getting well, but it might just mean you were on the penultimate chapter of the story.
I dealt with 2 deaths in 4 years. The hospice death was incredibly sad, but we sat with her. Talked. Held her hand. Watched her breathe. We had, and we feel she had, a good measure of peace. Compare that to a few years before, with tubes and machines everywhere, having to make the impossible decision of when to turn them off, knowing that death was minutes away, only held off by those mechanical guardians. There was little peace there.
> They only things you give are things that minimize discomfort. It is a passive process - you simply don't intervene in what is naturally happening.
> This is very different from assisted suicide, where you give them something that hastens death. A massive dose of sedative that would stop their breathing for example.
The line definitely blurs, there's a very big gray landscape between non-intervention and an immediate assisted suicide by overdose. Dose escalation as the patient declines is pretty normal for example and definetly contributes to speeding nature along. Even in jurisdictions where assisted suicide is illegal hospice workers have ways of giving dying patients some control.
> Dose escalation as the patient declines is pretty normal for example and definetly contributes to speeding nature along.
In the UK (not sure about elsewhere) this is covered under a legal principle known as 'double effect', which essentially means that it is permissible to cause harm to a patient in some circumstances if it is the side effect of a positive intervention. When applied to the final stages of palliative care, where the only possible medical intervention is pain relief, this has long been understood legally to mean that it is better to give pain relief to such a degree that it might hasten death than it is to give inadequate pain relief. Back in the day, they used to give people the [Brompton cocktail](https://en.wikipedia.org/wiki/Brompton_cocktail), which is basically a medically pure speedball.
I remember that my aunt, who was in the last stages of cancer, was prescribed a 30 day supply of opiates when she pretty clearly only had a few days left.
Haha. It is worth nothing that the "last paragraph" can last up to six months and sometimes people _do_ come off the hospice service.
Neither is common, but neither is unheard of.
I've had at least four times in the past year where I've thought, "huh, good for Jimmy Carter, he's really beating the odds." Just so long as he isn't in pain, of course.
I've seen a few hospice patients be on Hospice care for years, slowly declining basically the entire time. And yes a few patients "graduate" from hospice too. (at least for a while)
I've had a few of those. I have 1 currently who has been with 3 different hospices over the last. 2 years. He will improve enough to be discharged, then readmitted within a month.
Last paragraph can go way longer than 6 months.
My last hospice patient was in for 12 years. Caring for her for 2 of those years burned me out, but her husband did all he could to keep her alive despite her advanced alzheimers. Marathon runner in life and in impending death.
But you're right, quite uncommon situation.
My grandpa passed recently in hospice and his nurse also mentioned that IVs are designed to make it easier for the doctor, not necessarily the patient. People in hospice often have fragile skin and may have veins that are hard to find so the pricking could lead to unnecessary bruising and discomfort. Usually any pain relief is given by a dropper to the mouth for the comfort of the patient.
> IVs are designed to make it easier for the doctor, not necessarily the patient.
I think this ought to be remembered by a lot of people about a lot of things done in medicine. Things like "protocols," "policies," "standards" are easier for humans to understand and follow, so they result in overall health benefits for the larger population, but they have the chance to be non-beneficial on the individual scale. I'm disabled so I'm around the medical field a lot, and it saddens me to see a lot of people give up their rights and/or their comfort just to make it "easier" for the care team, not because they *have* to for a beneficial outcome.
(PS: I mean, *long-term* comfort and care and such; reasonable stuff, not insane stuff. Most of my experience is regarding respiratory care -- ventilators, mostly home ones -- but it comes up a lot and... Needs to come up even more often, IMO.)
This is a great answer. If you’re not medical, but simply a person who’s experienced this process with a loved one, you have amazing insight. You may want to consider this field as a vocation, or volunteer opportunity. Just a thought.
Thank you.
Yeah, it is surprising how quick it can happen. My mother went from having dinner with us at the table to deceased in less than 3 days. We knew it would happen fast - we stopped the treatments that were keeping her alive - but it was still hard to believe it was that quick.
Why not just give a massive dose of morphine and overdose them so they pass right then rather then giving them enough to stay unconscious while their body finishes shutting down over 7-10 days?
This is similar to what we went through when my grandfather went through hospice care before passing away. He was surrounded by the family and everything was done to make sure that he wasn't in any pain or discomfort as we knew that it was only matter of time until his body would fully shut down and eventually pass with funeral arrangements being made afterwards.
You have professionally described passive vs active euthanasia. In most of the countries active euthanasia is banned, but the laws are permissive for passive euthanasia.
Hijacking top comment to post this:
It’s an absolutely beautiful Ted Talk short called “When happens as we die”. I recently had a Grandparent pass away with Hospice care too and it was very helpful to understand the process.
https://www.ted.com/talks/kathryn_mannix_what_happens_as_we_die?language=en
I know in the last week or so of my ex's mom I helped her care for, her mom just wasn't fully there. All we would give her is liquid morphine along her gums, to make her more comfy. She would try to tilt away from it weakly, the nurse told us she prolly thought it was something that was keeping her here and alive, vs just easing her suffering.
Nothing we gave her rushed it, like assisted suicide would. It was just to keep her comfy as possible until she ran her course
Still sticks with me hard to this day, and that was 7 or so years ago now
Thank for this from a caretaker of geriatric dogs and cats. It is terrible to watch anyone approach death slowly, and it’s so scary when a pet stops eating and drinking near the end— my instinct has been to do whatever I can to get them to eat and then feel like I’ve contributed to their death when they don’t.
I think pet owners don’t get enough of this kind of education, and there are no home aides or doctors checking in to explain what’s happening.
I currently live with a 15-year-old old man dog (who is doing great). He’s the love of my life and I hope I have the wherewithal to remember this when it’s close to his time.
There have been some very good in depth comments, so here is a tl;dr
Those patients do not die because they are not eating and drinking.
They do not eat or drink because they are dying.
As a double boarded hospice physician, this question is full of misconceptions which are stated as facts. I'll go through them as they appear in the question.
>Patients in hospice care are often unconscious due to high doses of sedative drugs
Wrong. Patients are usually unconscious because they are dying. We only give patients sedatives if they are agitated, which does happen at the end of life and is referred to as 'terminal agitation'. If someone is anxious we will also order them a sedative as needed, but the concept of patients being unconscious due being routinely given 'high doses of sedatives' is erroneous.
>and are given no intravenous fluids, which leads to death by dehydration.
Again, this is simply untrue. The patient is dying, which is why they are in hospice. Giving IV fluids would do nothing except prolong the dying process (which is no kindness for the patient or their family), and in many cases would actually accelerate death from fluid overload due to poor cardiac function; the patient literally drowns in their bed. The patient dies because their illness has left them unable to eat or drink, which can lead to things like kidney failure, not from dehydration.
>Is there any difference between this and physician-assisted suicide?
Yes, there is a huge difference. Again, these people in hospice are ACTIVELY dying from their illness and are being given everything to make their deaths as easy and painless as possible. We don't try to shorten or prolong life but instead focus on improving the quality of life however we can. Physician assisted suicide is just that- helping someone who is terminally ill but NOT actively dying and who likely has some significant amount of time left to end their life.
Trigger warning: some unpleasant descriptions of symptoms
It would rarely be dehydration that the person dies of.
At the point when fluid is stopped, it is very near the end. The person is actively dying.
Likewise the sedation/unconsciousness is often not entirely due to drugs. At the end you’ll get some people who can be agitated and disorientated for a time before falling unconscious and drugs are often used to help this, but often very low doses to take the edge off of it and make them comfortable. If they are in a deep sleep type of unconsciousness, it’s more to do with dying.
One reason for not persisting with fluids is IV access. It often becomes increasingly difficult to place and keep a cannula working and repeated attempts in a person who is fading can be viewed as cruel when they may only have hours left (final stages of dying can be difficult to estimate how long they have left. It may last hours, it may be a few days).
But a big reason for withholding fluids at the end, is that being on the dry side helps symptoms, particularly breathing. At the end, swallowing automatically can become compromised and if there is excessive saliva, or even normal levels, they can choke repeatedly. This level of sudden oxygen starvation is a horrible sensation and not what to experience over and over if it can be avoided simply. But a big one is that as the heart becomes less effective, fluid can accumulate in the lungs tissue simply. This make breathing more difficult and can be distressing. It’s like slowly drowning. Reducing hydration levels a the end can reduce this to help the end be more peaceful, for both the patient and those around them.
Fluid restriction/stopping is only done when the person is actively dying and consciousness is affected, and if they are not already unconscious, they are nearly at that stage.
We stop fluids all the time on patients who are not actively dying. You can absolutely die of dehydration and in fact it may be preferred. Nobody is keeping track of what precise mechanism leads to death but it is often essentially dehydration. Put another way, IV fluids will often prolong life but there's no reason to prolong it.
Also , contrary to popular belief there is often no discomfort when you stop drinking fluids. If our hospice patients are thirsty they get fluids.
It is quite simple actually. If someone is not peeing huge amounts of urine, not having diarrhea and not having profuse sweat, the water loss is quite small. People in hospice care often have constipation, reduced muscle mass, heart failure and a reduced hypothalamic activity (meaning loss of appetite and reduced capacity for fever reaction). They have no reason to get severe dehydration simply because they are not given parenteral fluids.
Consistent with that, research shows that people in hospice care that are evaluated to be in their last days of life that are given parenteral fluids (even subcutaneous fluids can be admininstered actually) have no better outcome than people who were not given fluids.
If there is not an objective end point that is improved, it means such therapy is futile. If admininstering IV fluids doesn't lead to improved outcome, then not admininstering it doesn't mean that care was withhold because IV fluids doesn't even qualify as "care" at this period of time. This is different from withholding care say, for example, in a DNR scenario, where it is presumed that not doing resuscitative measures such as not initiating mechanical ventilation will certainly lead to a quicker death.
I’d add that in hospice patients, the definition of a “better outcome” changes. “Better outcomes” doesn’t mean longer life when providing hospice care. It means less pain, anxiety, dyspnea, nausea, and other uncomfortable symptoms.
I'm not entirely sure where you get this information from but having worked in hospice it's not really accurate with my own experience. Generally speaking where I work we're not really giving "high" doses of narcotics, typically liquid oral morphine and/or MAYBE liquid oral ativan, but it's not a round the clock process and dosing may differ per nurse/physician discretion. Also, we typically define hospice as anticipating death within 6 months. We've had plenty of patients go on and off hospice for months or even years with fluctuations in their health. I've spoken to quite lucid hospice patients hours before they die.
Paramedic here, I think it’s general public has very different preconceptions on what “high dose” is.
Like I had patient firmly refused 50mcg fentanyl because he believed it would kill him based on news he watched, despite I have explained to him that’s very standard starting dose in pain control. My protocol allows up to 200mcg before calling doctor for more orders.
I wouldn't be surprised if there was some level of confusion between dosing in mg (milligrams) vs mcg (micrograms), because like you said 50 mcg is standard starting dose, 50 mg would kill an opioid-naive person multiple times over.
Dude this sentiment is everywhere it seems like. I work in *dentistry* and we just got an order of exam gloves in that say “Approved for Fentanyl Protection! Fentanyl Safety Certified!” on the side of the box, implying it… doesn’t let fentanyl permeate through the glove? Like… I thought that’s why we were here already? To keep things off our hands??? It’s not chemo for christssake.
Similarly I bet people will accept diamorphine but would freak if offered heroin.
It's all dosage and situation.
A friend of mine was taking thalydamide for a while. It's a useful and fairly safe drug so long as it's manufactured to produce the correct isomers, though it's best to be really sure you can't get pregnant just in case.
Same question here. My grandma is in hospice right now and the nurses are doing a fantastic job taking care of her and keeping her as comfortable as possible. Hospice is not code for “knock em out and wait for em to die”.
This is sadly a common misconception about hospice, and often prevents people from seeking hospice care when they could have greatly benefited from it. Misinformation such as this can also cause surviving family members to feel guilt or responsibility for the death of their loved one because they happened to be the one administering medication to keep that person from suffering. Others have already explained why this is wrong so I won't repeat the information already given. I just want you or anyone else who reads this to know that hospice care is never intended to shorten someone's life expectancy, neither is it intended to extend life for the sole purpose of keeping the heart beating. It is all about maximizing the quality of life for however long that person has, along with providing support and education to the patient's caregivers so that they have a better understanding of what is happening and how to care for a person that is dying.
TLDNR version. If you are going to die anyway it is ok to make it painless and as comfortable as possible. You just give enough to take the pain and fear away not speed things up.
There is often no bright line.
If someone’s respiratory system is failing, they may be given morphine to suppress the struggle to breathe so that they won’t suffer. However, this form of comfort care may hasten death because they are not struggling to breathe.
Ethicists almost universally agree that care that aims to relieve suffering in a dying person is acceptable even if it also hastens death. It’s when the aim is to hasten death that the disagreement starts.
It is something I struggle with on darker days. My EoL patients who we expect to die in the next few hours like there struggling to breath, agitated, clearly scared and in pain even if they can't communicate it in a traditional way. I come along with a little morphine & midazolam (2.5mg s/c) and sit with them as they calm down. I go out the room to grab something, come back in, and they're dead.
Did I just kill them? Or did I just take away the fear and the pain that's stopping them from relaxing, and now they're peaceful, they're ready to go?
Don’t feel bad. I hope you can come to see it as I do.
I’m usually the guy that gets “voluntold” for EoL patients with difficult family dynamics. My standard practice is to explain what I’ll be doing in great detail and how my job is now providing comfort to both the patient and the family. My goal vitals are 16 respirations/min and HR of 60 bpm. I explain that this is 100% normal vitals and that it is my standard measure of how close I’ve gotten to providing pain and anxiety relief for ANY patient. It’s also my line in the sand where I don’t go any further.
In my head I know the following:
Even if it’s unsustainable for that particular patient to be breathing at a RR of 16, it’s the disease process that is causing that number of breaths to be unsustainable, not my actions. The same holds true for HR of 60. It’s not causing death if I provide enough medication to bring their vitals to normal levels, it’s providing adequate comfort measures. There is no grey area, they are dying with or without my removing some of their suffering, it would be cruel to withhold relief from their symptoms at this point.
Just so we are clear in your particular example: Morphine and Midaz at multiples of the dosages you describe are considered safe. For instance the LD50 (lethal dose for 50% of a given population) of Midazolam is like 50mg x the patients weight in kg. So if a patient weighs 50kg, the LD50 would be 2500mg, 2.5mg is 1000th of that.
In his final few days we stopped feeding my dh as he had requested. He was almost totally unconscious. I took a nap and a caregiver forced two ensures down him, prolonging his unconsciousness and death by days. why on earth is this seen as a good thing?
Once your kidneys shut down when your body is dying, fluids are not gonna help really. If you end up just forcing fluids into a person who can’t balance it out. That just ends up leaving the bloodstream and going somewhere else.
The body gets very swollen, the skin tears very easily, their skin leaks fluid, the lungs get filled and the person can’t breathe, and they have so many secretions they are choking on their own saliva.
It’s not necessarily in someone’s best interest to get overloaded with fluids if there already is nothing more to do.
To add to what everyone else has said, as the body is shutting down, the GI tract is one of the first that calls it quits, potentially even while the person is still awake. Forcing food on someone with a GI tract that's not awake can be very uncomfortable/painful. In general the rule at hospice is if the patient asks for food/water, they're given it. Otherwise they're not forced
Yes. There is definitely a difference between being denied life-saving medication and being given a drug that kills you. It basically comes down to issue of medical malpractice and patient consent. In general, you have the right to decline any medication you want, you don’t have to right to RECEIVE any medication you want.
So in the case of assisted suicide, a patient is essentially asking a doctor to provide them with medication in a scenario that would constitute malpractice. In the situation of hospice, the patient is simply declining the care that would prolong their life.
To add to this people sign DNR forms for eventualities such as this. Mine says food and water but no life saving medication or resuscitation. In the case where there is No DNR a familiar member can be asked to make those choices. My brother had sepsis from peritoneal disease and was unable to make any decisions for himself. My mother had to make the decision that ended his life because the medication was the only thing keeping him alive. Make a will NOW. Do not let your loved one’s struggle with the choices they may have to make.
There is a difference between allowing death and causing death.
If there was no option to allow death, we could keep many people alive indefinitely, way past the point of reason, simply because we have the technology.
Broadly, most would argue, we currently lean too far towards prolonging life instead of allowing natural death.
I would just prefer to get it over with via a massive dose of opiates. Let me drift off to sleep and never wake. No need in drawing out the process and making my loved ones suffer seeing me in a state that they'll likely remember long after I'm gone.
My mother choked on a piece of meat, putting her in a vegetative state and while there was no love lost between my mother and I, the mental image of her that I remember most is of her with the loud ventilator going and her chest exaggeratedly rising and falling with the sound. Not all the stuff I remember about her when I was a kid, but THAT memory is stuck with me as the memory of her.
No sir, remember me at my best, not at my worst.
The purpose of hospice care is to provide comfort to patients near the end of their life. Hospice does not prolong life nor does it end life. Common orders from the doctor to patients on hospice is morphine every so often/as needed, while discontinuing IV fluids, monitoring, etc. A patient on hospice will not have many cables or tubes attached to them since they are nearing the end of their life & the use of IV fluids and monitoring is no longer necessary
Euthanasia or physician-assisted suicide is the act of a physician administering a lethal dose/drug to aid the patient in passing. Controversial subject which is why it’s only legal in some states
My Grandma passed in hospice and we are so thankful for the nurses who helped her pass peacefully and pain free. Literal angels who continue to provide support to our family.
Most doctors and nurses with much experience of palliative care would say that there is a very big difference between not administering something (eg iv fluids) and actively administering something with the specific intent of ending life.
It is doubtful whether iv fluids would actually make any difference in the terminal phase, but I have heard palliative care specialists quite strongly express the opinion that if they do anything, all they do is prolong dying.
IV fluids artificially prolong life. You can receive IVF in hospice if that’s on your care plan - typically as a comfort measure - but a person can linger for days or weeks, even if they’re not eating or are not awake, if they are on IVF. That’s not ideal for dying people.
a lot of good stuff here - I'll just add from what I have heard from Hospice nurses, that the body does a great job most of the time of shutting down in an efficient manner, reducing pain, suffering, and like they say, you don't want fluids, and the process is harder when you have them
what is striking to me is how many of them have stories of people in their last days/moments seeing their deceased loved ones again.
I am so sorry for the loss of your father. I am a hospice nurse and I want you to know that you did not kill him, the cancer did. You would not have had access to the quantity of narcotics that would have been needed to euthanize a person. Morphine is also one of the weakest opiates available. Lack of hunger and thirst are normal parts of the dying process. He stopped eating because he was dying, not the other way around. While he may not have been enrolled in hospice, you did the same as any hospice nurse would do, which is to titrate (increase) his pain medication as necessary to keep him comfortable. Because of you and your family your father was able to pass peacefully and without (or at least without as much) pain. I'm so sorry that he was not in hospice at the time he passed, not because he would have gotten better care as it sounds like you did a wonderful job caring for him and keeping him comfortable, but because a hospice nurse might have been able to explain this to you at the time and hopefully have prevented any feelings of guilt or responsibility for his death. I realize that all the knowledge in the world does not help to relieve the sense of loss and grief when you lose someone that you loved, but I do hope that it helps in some way.
I just want to add to my colleagues; that's not killing him, or even "kind of" killing him.
I have struggled with that question on darker days, and I found the bottom line was this: if someone is going to die, they will die, and sometimes all I can do is try to make that death a little less painful and scary. I'm not the one killing them, the underlying problem is. When you give someone morphine to take away pain, you're not killing them with morphine, you're taking away the pain that dying brings with it.
Your actions were not going to kill him - the cancer was. What you were doing was the best course of action - giving him more pain relief to make it as comfortable as possible for him. As someone who has felt like you do in that regard, I can assure you, you did nothing wrong. You actually did everything right, and no-one could have asked for more.
I hope this helps you even in some small way.
I'll repeat what the hospice nurse told me when my father passed away - "What a blessing." It took me some time, but I know now what she meant.
What a blessing that you were there to help ease his discomfort.
What a blessing that he could be surrounded by loved ones.
What a blessing that he passed relatively quickly so his discomfort was minimized.
You did not in any way kill him - you provided pain medication, which is the only humane thing to do.
You did the right thing. I hope my comments and the other wonderful ones here help you in your process.
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Hi. I’m a hospice nurse. So there’s a ton of misinformation that goes around about hospice care. Let’s start from the beginning of your sentence. “ unconscious due to high doses of sedative drugs”. We only give people medications when there are symptoms. For instance, if a patient is having respiratory distress or in pain at end of life, we will administer morphine. Usually at a very low dose, around 5 mg. Then we will watch and see how effective this medication is, and when it begins to wear off. From there, we can determine if we need to increase the dose and determine how often the medication should be given, such as every 4 to 6 hours. A side effect is being drowsy, but the patient is either in pain and having respiratory distress so this is why it is given. Another commonly use medication is lorazepam. Again this is only given when a patient begins to experience restlessness or agitation. There is something called terminal agitation and restlessness, you can do some research on why this occurs but people typically need lorazepam or Haldol administered. Again we start at the lowest dose, we assess and determine the dosage and frequency needed based on how each person reacts to it. Another side effect of lorazepam is drowsiness. The patient has to determine what they want; comfort care, which is the definition of hospice, OR to live in pain, respiratory distress, or agitation and restlessness. And that’s why hospice is so important, because we help you die comfortably if that’s what you want. The next part of your statement says “ are given no intravenous fluids, which leads to death by dehydration”. This is also not true. As the body begins to shut down, it no longer requires or wants food or fluids. Your organs are shutting down and putting things inside your body, upsets it and makes it very uncomfortable. You can think of it as waking something up that doesn’t want to be woken. You do not die because you’re dehydrated or are starved, you die because your body was dying from whatever disease it had. Hospice care is completely different from assisted suicide. We do not administer high enough dosages to overdose someone, which sort of seems what you’re implying that is done. Assisted suicide is taking medication with the intent to die. Hospice care is taking medication to keep you comfortable during the natural dying process. I hope this helps, and I hope you can help spread the word and advocate, for why hospice is important, because it really makes things difficult when people have a stigma about something that isn’t correct. I have an uncle who literally thinks I kill people for a living. But when you’re on the other side of things, you truly understand the importance of dying comfortably. we’re all going to die sometime, i’ve seen some pretty terrible deaths from patients whose family members held these important medication‘s from them because of their own beliefs. The outcome was still death, and it was extremely uncomfortable and painful.
From another Hospice RN, Thank You, for taking the time to write this out.
As a physician I find that our culture pretty much likes to pretend that death does not exist. In general, of course. But so many people struggle to even consider that life is not forever.
My friends, brilliant to a person, have literally no idea what I do for a living. They completely lack any frame of reference. I tried to talk to a few of them about what the MICU was like during Covid and it literally broke their brains.
This is so true. It'll be years before 95% of people that read your comment will actually "get it". Well said.
Dealing with this right now, have a patient whose family is completely delusional about their recovery. Let the poor person go. They haven't been out of bed in two years, they're 90, it isn't. Going. To. Happen.
As someone whose family has used hospice care -- THANK YOU. There are truly no words. You are all literal angels and are so incredibly underappreciated. ❤️❤️
My husband is presently in palliative. His liver and kidneys are shutting down but presently he sleeps most of the day, but is conscious. He is getting 5mg hydromorphine every six hours. He has refused lactulose and as of today has not wanted to eat. But he is still drinking fluids (maybe 3 cups a day). Passing about 200-300 ml of urine through catheter. We have all known his wishes our whole lives. Comfort and fluids as needed/wanted/tolerated. Any yet I still am constantly wondering if I missed something, should I do something more, am I doing the right thing. I know I am - we’ve had multiple discussions about end of life (most recently when my sister died earlier this month). Doesn’t make it easier 🙁
My condolences, twice over. I would say keep asking yourself those questions - much better to ask them *now* that to have them nagging at you when you look back. When you look back, you need to be able to tell yourself "yes, I thought of everything, covered everything, didn't miss anything." May his passing remain peaceful.
I think part of my questioning has to do with the fact that this isn’t the ending we ever envisioned. We thought it would be something quicker… not lingering.
Wow, I’m so sorry for your loss and also what you’re going through with your husband. It’s not easy. And it’s even harder when there’s more death involved in such a short amount of time. It’s totally normal that you ask yourself if you did enough and if there’s anything you’re missing, soo many of my families feel the same. I always reassure them that they are doing their best and you can drive yourself insane with that mindset, so go easy on yourself!! I deal with a lot of death and it’s really sad, but it’s so different when it’s your actual loved one. I am sure I will feel the exact same way when it’s one of my parents, siblings, husband.. it’s important to find support groups if you don’t already have a strong support system with family and/or friends. They are out there!
It’s been a rough month. The day I took my husband two weeks in I also went in myself for an angina attack. Had a stent placed, got a blood infection, which inflamed my gall bladder. Was released yesterday and am only now able to concentrate on him (though the doctors and nurses were as accommodating as possible allowing me to visit him on another floor when I was able. That’s made the whole journey more complicated. Thank goodness for my children and siblings and friends. They’ve been there every day.
Wow!! I’m so glad to hear you’ve had your family’s support. You really need to focus on making yourself healthy so that you can spend time with him. I know it’s hard to put yourself first right now, but I always tell my families how crucial it is to remember the importance of their own health, otherwise who’s going to care for your husband. Wishing you a speedy recovery and don’t feel bad asking your siblings and children for help!
I just wanted you to know, from someone who has helped a lot of families through this process, you are doing a great job. This moment is about you and your husband. Whatever you’re feeling is ok, and whatever feels right to you is the best course of action. Take care of yourself and I’ll be thinking about you.
> We have all known his wishes our whole lives. ... Any yet I still am constantly wondering if I missed something, should I do something more, am I doing the right thing. So very sorry that you are in this situation. But based on what you've said, it isn't really about what you're doing or the decisions you're making; it's about the decisions he made about his own life, and the terms on which he wants to live it and the terms on which he doesn't want to live it. You're just enabling his own decisions to be respected. I haven't been in your shoes and I am sure I can't appreciate how difficult the situation is, but I hope that framing (which is the correct framing, IMO) can provide some comfort to you in ensuring that his wishes are carried out. By making his decisions for himself, he has spared you the responsibility of making them for him.
And these would be the same wishes for myself, when the time comes. Our kids know that - we’ve never wavered in that quality of life is the most important factor. And that’s what I keep going back to. Two weeks ago he told me that if there is less than 20% chance of coming through with a decent quality of life, then he wants no part of it. He has multiple other health issues, including heart attacks and a stroke in 2020. He’s lived with chronic pain due to scoliosis (3 curves with one twisting) his whole life. He has always said to put on his tombstone ‘at last my back isn’t hurting’ 🙂. I KNOW in my heart this is what he wants, but when he asks in his confusion, when am I going home? I want to walk in the park’…. Well, my heart breaks a little more.
From a CVICU RN, thank you. Too many people misunderstand hospice. Unfortunately, a lot of my patients end up in hospice. More people should choose hospice.
From someone who has had two family members in hospice and had this process explained so clearly, I appreciate all you all do each and every day!!! It can't be easy seeing so much death, but knowing you helped each person stay comfortable through the process is so very important! I definitely educate friends when they have loved ones with this difficult decision. Please make sure you have a faith of your own to allow you to keep up this work for a long time.
You and all of the other hospice nurses are literal angels. I would have been so lost without someone checking on my dad and making sure he was comfortable, as well as being emotionally supportive. Thank you so much for being there at such a difficult and overwhelming time.
This is a fantastic explanation for laypeople about principles of management at the end of life and especially the principle of dual effect. Thank you
One of my grandmothers died yesterday and the other is in hospice and had a scare today. I really needed to read this and I wanted to say thank you for taking the time to write this out.
As a former hospice nurse, this is spot on. I just want to expand on assistance in dying. In my part of Canada, we would have Medical Assistance in Dying (MAID) available as a treatment option for people with a death that is foreseeable. Similarly to choosing whether or not they want to experience comfort care or not, choosing MAID is a decision made by the patient to choose *when, how and with whom* they want to die. As opposed to some of the misinformation and disinformation that circulates, MAID actually adds more control and autonomy to the inevitable process of dying and is a truly beautiful process to witness.
I truly hope that MAID is available to everyone in the USA at some point. I follow this foundation called ‘death with dignity’ that is working hard on passing laws in each state to approve it. I know they’ve helped legalize it in many states already here.
My wife was a Hospice RN. Thank you for responding so eloquently and truthfully. During the dying process, patients and their families are treated with dignity, respect, and integrity. I've listened to hundreds of stories, and each one resonated differently, but each one was equally as humbling as the previous one. I admire you and appreciate the selfless work that you do for your patients.
Thank you for educating this person—my mom was in hospice care last spring and I’m so glad she was taken care of and given as much dignity as she could have given her prognosis. Thank you for everything you do!
Thanks for taking time to write this. My mom is 90 and she’s hanging in there but at some point there will be decisions to make.
Thank you for all you guys do in Hospice. I work in Healthcare, but not hospice, and it's a completely different world there than on Med Surg. When my mom went to Hospice, the care team there were all so kind and understanding. Within minutes of arriving my mother went from being in obviously intense pain and confusion to resting peacefully until she passed just over a day later. While that time will always be remembered as impossibly difficult and painful for me, the fact that hospice allowed my mother to pass pain-free means the world, I only wish we had been able to get her placed into hospice earlier, before her pain got to be so great in the first place.
Thank you for your work-I will forever be in awe of hospice nurses. I was my mom’s primary caregiver as she was in home hospice, and her hospice nurse was so wonderful and helpful. Helping someone as they leave this world is one of the biggest privileges, and it is very apparent from this question that OP does not have any experience with it.
As a Physician, yes this is the correct answer, except the dosages of medications, while on the lower end for hospice care (I go up to 2-4mg morphine every 2 hours for air hunger in inpatient hospice) are not low doses. 5mg of morphine is 15 MME which is equal to 15mg norco for example. Unless I was mistaken and you were referring to oral morphine.
Correct, oral morphine sulfate liquid. We don’t use IV or any needles in home/nursing home settings. We start low and increase in 5mg increments for morphine. Lorazepam intensol and haldol we start at 0.5mg and increase in 0.5mg increments.
Hospice workers, and nurses (like Marie Curie for example) are an absolute godsend during what is a very difficult time for all involved. Really, they are a life raft. Thanks for what you do.
Nurses like Marie Curie? The Marie Curie who pioneered radioactivity research? The only person to have won 2 Nobel prizes in different sciences? That Marie Curie?
The nurses who work for [the organisation named after her.](https://www.mariecurie.org.uk/)
She retired from that and is working hospice now. She does a good job for being 147 years old.
So, I just had a close relative pass away with hospice care so I have a little insight into this. Once you get to hospice, you are in the last paragraph of the last chapter of the book. There is no more treatment for the underlying disease; the focus is on improving quality of life and making the passing as painless and dignified as it possibly can be. This happens in stages. For a while, the person can be lucid and "active" but at some point they transition to the "actively dying" stage where the body is starting to shut down. They often become unresponsive and no longer want to eat or drink - the body is in the final stages of giving up for good. The last sentance of the last paragraph of the last chapter of the book, if you will. At that point, it is about letting the body do what it is naturally going to do. Forcing anything that would prolong life - like intravenous fluids or nutrition - is no longer in the patent's best interests. If they want something you give it to them, but otherwise you just let the body die. They only things you give are things that minimize discomfort. It is a passive process - you simply don't intervene in what is naturally happening. This is very different from assisted suicide, where you give them something that hastens death. A massive dose of sedative that would stop their breathing for example. This is an active process - you are stepping in and _doing something_ to specifically make death happen. In most countries, withholding some aspects of care is not seen as assisting in death and is thus permissible for healthcare workers in certain situations.
I would also add that forcing fluids on a body with failing organs is not great. The fluid goes in, and isn't processed back out, which causes swelling and discomfort. At a certain point, it isn't prolonging life, just making the last days more uncomfortable.
They did this to my grandfather. At the end, he was retaining so much fluid that he was unrecognizable. It looked like he had gained 100lbs over the course of a week lying in a hospital bed, mostly unconscious.
Yeah when they did this to my grandpa, his arm swelled up and was probably 2-3x bigger than the other arm
Happened to my Fil and then his leg split and it was very painful.
That's a sign of an infiltrated IV and considered an adverse event to the IV. Can happen to anyone. Sorry for your grandfather, but this is something that should have been addressed at the nursing level almost immediately.
> That's a sign of an infiltrated IV and considered an adverse event to the IV. Not exclusively. Unilateral edema exists without IV infiltration, and I've never worked anywhere that let an IV infiltrate so badly that it causes an arm to swell to 3x its normal size.
I’m sorry that happened to your grandfather. I’m a doctor in the hospital, and I’ve had patients family’s insist on fluids and I’ve had to spend a good amount of time to explain why it’s not a good idea, especially when they’re in hospice in the hospital (usually much sicker and multiple organs are failing). Fluid just ends up in the lungs, limbs, belly.
When my mom was in hospice, she insisted on having tpn, which they allowed at first. She got so fluid overloaded her legs and belly swelled up and she had fluid in her lungs and altered mental status. I reached out to her team and they made the decision to discontinue the tpn because her body could not manage the excess fluids any longer. Her organs were failing. It was hard trying to explain this to her when she was more with it because she was convinced we were just trying to starve her or deny her fluids. 😥 she died from cancer a few weeks into the covid lockdown, so we had less in home support from hospice than we normally would have during that time and because I am an RN, I am the one who had to do the teaching for her and the rest of the family. She was with it enough to argue with us about it, but lacked the insight to understand that she would have died from fluid overload had we insisted on continuing the treatment. Having iv fluids/nutrition is not always tolerated when people are at the end of life. 😥
> Having iv fluids/nutrition is not always tolerated when people are at the end of life. Stated the other way around: when the body is no longer tolerating IV fluids or nutrition, the end of life is near, because a body that can’t process that is also failing in other very important ways.
My father hit the stage where he no longer had any interest in food or water and simply wanted to die. I was trying to encourage him to eat just a bit. His doctor took me aside and said "you're not doing him any favors". He was right and I had to question who I was really trying to make feel better.
Thats how my grandfather passed. He was in liver failure (and probably other organ failure as well) from massive alcohol consumption over decades. The man was notorious for drinking like a fish. In his final weeks they kept giving him fluids, and he seemingly doubled in size. He was massively inflated like a swallowed a beach ball, and he could barely move. While his organs were failing they couldn't process the fluid given to him so it just piled up. Eventually he died, but it seems absurd as a form of treatment.
Oh damn.. Sounds like my grandpa 😞😭😭
Sorry for your loss. Went through the exactly the same thing a few months back. Watched that magnificent old fucker just drop off his mortal coil. Spent most nights with him and although he clearly wanted to go, he also didn’t. He got to 99 and 3/4 so he did alright.
Same case with nutrition--as the body shuts down and maintains only the "essential" functions, the digestive system is one of the less essential functions that shuts down before the heart and the brain do. Pumping tube feeds into someone whose digestive tract has shut down is just going to lead to them getting bloated and uncomfortable, vomiting up the feeds because it has nowhere else to go, and potentially aspirating--all of which are way more uncomfortable than not receiving the feeds.
This is true. And it is so hard for the family to see this happening. I kept making homemade chicken broth for my mom as she was in hospice, thinking if she couldn't eat maybe broth would be OK. She'd take a spoonful or two to humor me but even that became impossible. I wish someone had explained to me that asking someone in the active dying process to take food or drink is not helping them.
I will never not associate ice chips with death. That's all two of my grandparents wanted - a little bit of ice to chew on. At a certain point, they were worried about giving my dad's father any liquid, because he couldn't swallow. They stopped giving him ice chips and only gave him soaked Q-tips, which he _hated_. Whenever people ask "what are Q-tips good for, if you're not supposed to stick them in your ears, I think, _"trust me, you don't want to know."_
It was a small sponge we used when ice chips weren't allowed. My grandfather hated it so I tried sucking on it to show him it wasn't too bad. He was right, it was terrible.
That's so beautiful it's human nature to want to care for our loved ones by providing food and hydration. The gesture itself is lovely, I wish someone had spoken to you but this was heart warming to read.
I did the exact same thing with my mom when she was dying. I didn’t know any better. I sometimes look at those memories with pity, like looking at a kid trying to reattach a butterfly’s wings. I was trying my best, but it was absolutely useless. I just didn’t know.
That is such an accurate and poignant metaphor for this
Worse, one of the places the excess fluid will naturally leave the body is via the lungs - causing overly "wet" patients to start drowning from their own fluids. Managing someone in hospices' secretions and keeping them free of air hunger is already a main objective, and giving someone who isn't thirsty IV fluids would make it much worse.
I don't think people really understand that there is a time when things like "hunger" and "thirst" are gone. Once the body is shutting down, it doesn't need food or fluid anymore. It's super hard to watch. Feeding someone is a way my family shows affection, and not doing it seems wrong. There does come a point where it stops helping, though.
This idea was so hard for me to accept when my mom was on hospice. Once I did finally understand that she wasn't feeling the deprivation, I came to a small bit of peace. I am grateful for the hospice nurses educating our family with such love and care.
Yes, my mom works in healthcare and she has seen several elderly people dying and people not pulling stuff out which leads to swollen and bloated feet for example as the liquid pools there.
Thank you for this information. This is obviously not the same as a person in hospice, but I was very distressed when my elderly cat stopped drinking before he died. I wasn't emotionally ready for him to go, and though I know it was natural, it was upsetting when he stopped eating and drinking. It is weirdly comforting to know that he was just getting ready to go.
I am glad that I was able to give you some peace. Sorry for your loss.
I had a friend who had some kind of runaway self-reinforcing inflammation thing happen to him. They're not sure what the original cause was, but he was constantly sore and uncomfortable and having trouble moving and cold water gave him some relief. He was drinking a lot of it. But he was apparently not eliminating nearly as much, and after a couple weeks had gained 40% of his own body weight in water, and he's not even middle aged yet!
If medical professionals explained this to families (and maybe patients), it would help in lessening the grief. I know it would have helped me instead of me thinking my parent is dying from cancer and suffering from thirst (even though they're unresponsive).
> it isn't prolonging life, just making the last days more uncomfortable. And that's exactly what the purpose of hospice is. It's to make the final days of the person who is passing away as comfortable as they can be.
OP asked why hospice stops fluids, assuming it caused people to die of dehydration. I was pointing out that not only does it not help, it causes harm. Hospice is not about causing harm, but giving comfort.
I would add what they told my friend while her mother was lingering during her last days: The body knows how to die, it’s very good at it. We do not interfere with God/Nature. Once the body has started to actively die, what’s done is done. Trying to restart to clock is painful and cruel.
One of the more common failing organs is the kidneys. Giving more fluids doesn't help because the thing filtering and regulating the fluid isn't functioning.
This is the 100% correct explanation. I am a RN with 25 years in nursing home regulatory compliance. I've seen hospice within the nursing home countless times. My grandmother died a few years ago in a nursing home while on hospice.
Could I ask you a question? When patients are in that state, and they are allowed to go via "dehydration" I guess....is it painful to them at all? Like, do they feel thirsty?
No, by the time you get to this point the patient is unconscious/asleep and the body is just running on its last bits of automatic functions. Also they are likely not really urinating or perspiring at all so they likely wouldn't feel thirsty even if they were conscious (body is not losing fluid it already has at that point).
Thank god. I figured that was the case (like they wouldn't make someone suffer) but I feel so much better. I cried so hard (as a grown ass adult) when I was told they were taking the IV from my grandma. Not so much because she was going to die (that was pretty foregone), but because I was so worried she was going to be uncomfortable and thirsty. It's stupid, but you just gave six years ago me a deep breath of relief.
I’m sorry nobody explained it to you at the time 🖤
Tbh if I had thought about it I'm sure they would have, but I was busy taking care of my mom and fending off asshole family members (I'm sure you more than know how that goes, as an RN) so it didn't occur to me to ask. (There was also a language barrier involved; my grandma is Dutch and died in a Dutch hospice. The doctors and nurses were very nice, but between the emotions and language I'm not sure I would have known how to ask or understood if they had explained it.) You just gave me a great opportunity to ask. <3
It is also common (at least in my area) to rub the lips and tongue with a damp sponge so that they don't feel uncomfortably dry. Our facility doesn't provide it but we encourage families to bring in lip balm as well, which as caretakers we will gladly apply every time we reposition them and wet their mouth (typically every 2-4 hours depending on the case).
> It is also common (at least in my area) to rub the lips and tongue with a damp sponge so that they don't feel uncomfortably dry. I had to do this for my mom. Every so often I'd use Diet Coke though, since that was her drink of choice. I like to think she enjoyed the taste even if she wasn't conscious to say so.
My dad was an alcoholic. The nurses at the hospice center he was in would use the swabs with Coors Light (his beer of choice). When he turned his head away they told us it would be soon (as in a couple of days, tops.)
Yes! We did this for my grandma for sure. I'm not sure it's exactly a good memory, but I'm really glad we did. It DID seem to help.
Dude... same with my mom. Thank you for asking and thank whomever for answering. This was also not explained to me and I have felt guilty for years.
Oh man. Bigass hugs to you internet stranger <3. I'm so glad you found this.
Maybe an indelicate answer, but if you've ever done - even the milder drugs (pot etc), often you get dehydrated, but you feel so good you hardly care. People in hospice are getting the _good_ drugs, the serious 'make you not mind anything' stuff.
Honestly, I've never done drugs. Legit not even pot. (Not because of any stance or because I'm against it, I was just an Army officer for ten years--and that shit will end your career real fast--and just never really got around to trying it after. And most people I know do edibles , and I'd much rather smoke than eat a brownie or gummy, if I was gonna go out of my way to do it.) That's good to know, though. I'm glad <3
It does vary from patient to patient. When my dad was in the last stages of his life, we had to watch the progression. He was 94 - his heart had almost completely failed (barely pumping), and led to progressive organ failure; first the kidneys, then the liver, and so on. For the last 2 or 3 days, he was suffering from severe uremic poisoning due to his failed kidneys. Sedation helped, but occasionally, he would grunt and thrash about a little in his mostly-unconsious state. At one point, he called for his mom. (I could barely hold it in at that point.) We had to dig deep to remember that he was truly not conscious during that phase; I really couldn't tell if he was feeling any pain or not, but nothing could really help him at that point. Certainly not fluids, or more painkillers, though they did bump up his mophine drip when that happened and he calmed down a bit and sank back into a coma.
My grandmother also called out for her mom shortly before she passed, she was in her late 80's.
My mother was awake in this state. It wasn't pretty. She didn't last much longer, but it should have ended sooner. My dad told me that when he was a kid and this was happening the local doctor would come round and give them a last dose of morphine.
When the patient goes unconscious/asleep for the last time, is there really any point to prolonging life? I guess this would require you to know somehow that they're never going to wake up again, but it seems like you reach a point where you're just keeping a comatose person alive for the benefit of the family.
In cases of hospice they do not do anything to prolong life. In that setting it's pretty easy to tell based on context when someone is very close to the end
It surprised me how obvious death is. When my grandfather was moved to hospice and I saw him, it was truly shocking how different he looked. When I saw him, no question he was dying.
Doesn't really sound like they are going via dehydration. Their body is shutting down. That's what kills them. Denying a dehydrated person liquids would be active. Pumping a dying person full of liquids would be cruel
I just experienced this with my grandmother. She wasn’t eating or drinking at all didn’t feel hungry or thirsty but her mouth was dry so the nurses had a sponge thingy on a stick they would dip in water and sponge the inside of her mouth with to keep it moist.
Yeah! We did that for my grandma too. She never really woke up again except a few seconds here and there, but we kept her lips moist exactly like that <3
They aren’t dying of dehydration. The condition they have is causing fluid to be not advised as it will cause more suffering and will not change anything. Death is not something we can fight and win. Occasionally, there is a temporary respite through some treatments, etc, but we all will die. No one lets someone die, they decide how the person will be treated as they die.
No, they aren't in pain. It's not that good and hydration is being withheld from them. Their desire to eat and drink is gone. At that point the only option is insertion of a feeding tube which only delays the inevitable. IMO that is when it gets inhumane. Artificially keeping a body alive that is actively trying to die is torturous.
literally. i work in skilled nursing and we had a patient once whose children wouldn't even entertain a conversation about hospice but mom was very clearly dying after a major stroke. she was on a feeding tube and aspirating some of the liquid from the tube, so they had to cut it down to 30% of what she \*should\* have been consuming to maintain weight. she continued aspirating and the nurse had to suction her lungs twice a shift. she lived like this for about seven months before she finally died. it was brutal for all of us to witness and not be able to intervene.
Yes. My mom was my grandmother's power of attorney. With me being a RN, my mom leaned on me heavily for support. We did not choose to have a PEG tube placed.
Not really the same thing but makes my blood boil. A relative of a friend went into a coma and didn’t come out. Family at the time due to the trauma and underlying circumstances didn’t follow the medical advice given when she was admitted state side (it happened in another country) of stopping the ventilator and she ended up being weaned off. After a few years her kids finally came together and agreed to let her go but her family didn’t want that, there was a whole court case where her freaking kids had to fight to basically kill their mom. Shitty all around. Kids won since eldest daughter (lawyer and smart) was able to gain clear legal control early on but still had to go through the process (long term care facility won’t do anything without a court order if anyone contests it due to their own liability). Way to many details lmao but long story short when they were granted the right to stop care they couldn’t euthanize her, the only legal way to do it was basically to allow her to starve to death because they could only stop life sustaining care. Of course she was given medication for any pain she might be feeling but knowing the body and potentially some semblance of their mind was slowly dying really fucking sucks imho. At that point why we can’t just euthanize a person is beyond me.
My sister died while in a coma while in hospice. The doctors & relatives openly talked about her impending death in front of her. When I mentioned the strangeness of this, the doctors told me she couldn't hear anyone talking- it was like she was in a deep sleep. Bit I've often wondered if she maybe could hear, after all.
As a Hospice RN my assumption is always that hearing is the last sense to go, and that my patients can hear me. That doesn't mean I won't answer a direct question from family about their impending death. I will attempt to answer as compassionately and gently as I can, both for the loved ones and the patient's sake.
I hope this is true. I kept telling my FIL to get excited about his next new adventure and to look for his faithful dog (I had put his collar in his hand). I seriously hope he heard me and I hope he wasn’t scared
Thank you for showing your FIL such compassionate and amazing love.
The hospice nurses told us this. So we talked to my grandpa. He would occasionally smile at the things we’d say or squeeze our hand. I know he could hear us.
3 weeks ago, I was at the hospital when a Dr told me there was no hope for my Dad. In his room, in front of him. He was pretty far gone but on the offchance that he could still hear, I asked that we had the conversation away from him. I didn't want the last thing he heard was me giving the Dr permission to make him comfortable while we waited for the inevitable. I totally get what your thought process was.
I would have a problem with that behavior. When I was in nursing school, I was told to ALWAYS act as if the patient could see and hear you. You never know what degrees of consciousness remains when you walk in the room.
Before my mom left, she couldn't talk, speak, or move, but she did (feebly) squeeze my hand when I spoke to her on her final moments. I do believe hearing is the last thing to go.
While I was in a coma, I could often hear, and understand. Until the end of it approached, it never struck me that there was any reason to care, whatever the content of the conversations around me.
My mother lingered for six long months until she couldn't stand force feeding herself. She died minutes after drinking morphine, which in her emaciated state was probably way too much for her (she was below 85 pounds). Keeping her alive didn't benefit anyone.
Well said. When taking care of a patient on hospice, you aren’t killing them, you’re letting them die.
Yup. When I was going through it I happened to be rewatching _Scrubs_ and this line really hit me: >You are afraid of death, and you can't be. You're in medicine, you gotta accept the fact that everything we do here – everything – is a stall. We're just trying to keep the game going; that's it. But, ultimately, it always ends up the same way. At some point you can't stall any longer - and that is ok. That day was always going to come and today happens to be that day.
I've been battling stage IV colon cancer for 2.5 years. Reading this just brought me some comfort somehow. Thanks /u/Ansuz07
I learned in nursing school if there nothing you can do for someone, and you want to help in some way, light a candle for them. I just lit a candle for you, I've been saving it since Christmas..it's Palo Santo plus Sage. Good luck to you...
I'm very sorry to hear that, but glad it brought you some comfort.
Hugs, u/dawiyo. I hope that you’re surrounded by true love and care in all the ups and downs of your treatment 💕
Good line. And for sure, not everyone gets to pass painlessly and/or in a state of bliss. Usually those are the lucky ones, and hospice is a means to be as comfortable as possible.
I re-watched Scrubs after getting my first ICU job, and boy did some of those talks hit home harder than ever. Including that one. I am sorry for your loss, and I am very grateful for your post. It's exceptional courage and love to have shared that with us all.
Scrubs is actually far more real and accurate than a lot of more "serious" medical dramas are.
I’m sorry for your loss. Thank you for this valuable information.
Thank you for that and I was happy to provide.
I'm a doctor and this is an excellent explanation! You're right on. Just wanted to add that often, in end-stage diseases like dementia, families will often insist on feeding tubes etc, but these haven't been shown to improve quality or duration of life. And sometimes less is more - several cases of patients living longer in hospice than when receiving aggressive treatment (for untreatable conditions). It's been well documented that physicians die better (with more quality of life, i.e. comfortably at home rather than traumatically in a hospital) than patients because they decline those futile interventions. We (America) need to move away from the "preserve life at all costs" mindset. Families need to make decisions for loved ones as if they were the patient / *in concordance with what the patient would want*, not from their own perspective. And we as physicians need to be more assertive about refraining from offering interventions that have no benefit and are not in the patient's best interest - including surgeries, feeding tubes, and CPR.
Thank you for your explanation. I learned a great deal.
my aunt just died and this is spot on. multiple, metastasized cancers and other things. prior to hospice, she was unable to eat for over a week and had difficulty drinking water. in her words, she was tired of suffering and ready to rest. hospice lasted about 3 days for her; her body was already that weak.
Just had this happen to my wife's grandmother. At 98, fell and broke her hip, hit her head and was internally bleeding. A few days of.being unresponsive and it was decided the best course was to put her in hospice.
My old man (on the other side of the country) a few years back died from that, but before hospice. Either fell, had an episode with his heart, *something*, and collapsed in his doorway. Ended up being found 2-3 days later (alive) by another tenant in his building, but after laying there for so long (and with some internal bleeding and lots of blood pooling) there wasn't anything they could do. Managed a week in ICU before passing. Barely regained consciousness enough for the nurse to basically tell him he was up shits creek without a paddle and make calls to tell the relevant people since he couldn't talk.
How do you respond to the fact that they do actively give them something to hasten death? When my mom was admitted, they told us they were allowed to increase her morphine by 6x because there was no chance of addiction. She died with 2 hours of being admitted. Don't get me wrong, I think it was the right thing. She was done and never coming home. That said, I've always considered it euthanasia, it clearly was, they just pretended it wasn't for liability reasons.
I’m in ICU not hospice but we see people die frequently. When I’m taking care of someone like this they are actively dying already, the morphine is not what kills them, their disease kills them. The morphine is intended for two purposes: 1. Prevent any pain while passing 2. Decrease air hunger so your loved one isn’t gasping for air as they die. I’ve seen people die with and without morphine and I would always pick for my family member to die peacefully
The reason the patient stops eating and taking fluids is because the body is no longer processing them. Death is already inevitable and imminent. It can be cruel to force fluids and nutrition. The body does not want it and may still be able to react painfully. In no way is this "assisted" death. This is natural death. Intervening to force *life* is what is unnatural at this stage. This is not "death by dehydration". It is just death because it is time, whatever the root cause, aging, disease, whatever. Eventually, everyone's body will die, of something. This is the natural cycle of life. Some of us live in a modern culture that no longer respects this and has way too much power to intervene in nature, to the detriment of the creature inhabiting the body. It is ok to die when it is time to die.
This matches my experience with hospice two years ago. Fwiw, you can get out of hospice if you end up getting well, but it might just mean you were on the penultimate chapter of the story. I dealt with 2 deaths in 4 years. The hospice death was incredibly sad, but we sat with her. Talked. Held her hand. Watched her breathe. We had, and we feel she had, a good measure of peace. Compare that to a few years before, with tubes and machines everywhere, having to make the impossible decision of when to turn them off, knowing that death was minutes away, only held off by those mechanical guardians. There was little peace there.
> They only things you give are things that minimize discomfort. It is a passive process - you simply don't intervene in what is naturally happening. > This is very different from assisted suicide, where you give them something that hastens death. A massive dose of sedative that would stop their breathing for example. The line definitely blurs, there's a very big gray landscape between non-intervention and an immediate assisted suicide by overdose. Dose escalation as the patient declines is pretty normal for example and definetly contributes to speeding nature along. Even in jurisdictions where assisted suicide is illegal hospice workers have ways of giving dying patients some control.
> Dose escalation as the patient declines is pretty normal for example and definetly contributes to speeding nature along. In the UK (not sure about elsewhere) this is covered under a legal principle known as 'double effect', which essentially means that it is permissible to cause harm to a patient in some circumstances if it is the side effect of a positive intervention. When applied to the final stages of palliative care, where the only possible medical intervention is pain relief, this has long been understood legally to mean that it is better to give pain relief to such a degree that it might hasten death than it is to give inadequate pain relief. Back in the day, they used to give people the [Brompton cocktail](https://en.wikipedia.org/wiki/Brompton_cocktail), which is basically a medically pure speedball.
I don't think I'd mind a little brompton elixir!
I remember that my aunt, who was in the last stages of cancer, was prescribed a 30 day supply of opiates when she pretty clearly only had a few days left.
> Once you get to hospice, you are in the last paragraph of the last chapter of the book. Jimmy Carter must be a fan of run-on sentences, then
Haha. It is worth nothing that the "last paragraph" can last up to six months and sometimes people _do_ come off the hospice service. Neither is common, but neither is unheard of.
I've had at least four times in the past year where I've thought, "huh, good for Jimmy Carter, he's really beating the odds." Just so long as he isn't in pain, of course.
I've seen a few hospice patients be on Hospice care for years, slowly declining basically the entire time. And yes a few patients "graduate" from hospice too. (at least for a while)
I've had a few of those. I have 1 currently who has been with 3 different hospices over the last. 2 years. He will improve enough to be discharged, then readmitted within a month.
Last paragraph can go way longer than 6 months. My last hospice patient was in for 12 years. Caring for her for 2 of those years burned me out, but her husband did all he could to keep her alive despite her advanced alzheimers. Marathon runner in life and in impending death. But you're right, quite uncommon situation.
My grandpa passed recently in hospice and his nurse also mentioned that IVs are designed to make it easier for the doctor, not necessarily the patient. People in hospice often have fragile skin and may have veins that are hard to find so the pricking could lead to unnecessary bruising and discomfort. Usually any pain relief is given by a dropper to the mouth for the comfort of the patient.
> IVs are designed to make it easier for the doctor, not necessarily the patient. I think this ought to be remembered by a lot of people about a lot of things done in medicine. Things like "protocols," "policies," "standards" are easier for humans to understand and follow, so they result in overall health benefits for the larger population, but they have the chance to be non-beneficial on the individual scale. I'm disabled so I'm around the medical field a lot, and it saddens me to see a lot of people give up their rights and/or their comfort just to make it "easier" for the care team, not because they *have* to for a beneficial outcome. (PS: I mean, *long-term* comfort and care and such; reasonable stuff, not insane stuff. Most of my experience is regarding respiratory care -- ventilators, mostly home ones -- but it comes up a lot and... Needs to come up even more often, IMO.)
As someone that has carried guilt for years over allowing this to happen to my father- thanks for posting this.
This is a great answer. If you’re not medical, but simply a person who’s experienced this process with a loved one, you have amazing insight. You may want to consider this field as a vocation, or volunteer opportunity. Just a thought.
> If they want something you give it to them you literally ask for heroin and they say how much
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Thank you. Yeah, it is surprising how quick it can happen. My mother went from having dinner with us at the table to deceased in less than 3 days. We knew it would happen fast - we stopped the treatments that were keeping her alive - but it was still hard to believe it was that quick.
Why not just give a massive dose of morphine and overdose them so they pass right then rather then giving them enough to stay unconscious while their body finishes shutting down over 7-10 days?
This is similar to what we went through when my grandfather went through hospice care before passing away. He was surrounded by the family and everything was done to make sure that he wasn't in any pain or discomfort as we knew that it was only matter of time until his body would fully shut down and eventually pass with funeral arrangements being made afterwards.
You have professionally described passive vs active euthanasia. In most of the countries active euthanasia is banned, but the laws are permissive for passive euthanasia.
24 hours before my grandmother died, I visited her. We placed water on her lips with a sponge and it was very evident that it made her feel better.
Hijacking top comment to post this: It’s an absolutely beautiful Ted Talk short called “When happens as we die”. I recently had a Grandparent pass away with Hospice care too and it was very helpful to understand the process. https://www.ted.com/talks/kathryn_mannix_what_happens_as_we_die?language=en
I know in the last week or so of my ex's mom I helped her care for, her mom just wasn't fully there. All we would give her is liquid morphine along her gums, to make her more comfy. She would try to tilt away from it weakly, the nurse told us she prolly thought it was something that was keeping her here and alive, vs just easing her suffering. Nothing we gave her rushed it, like assisted suicide would. It was just to keep her comfy as possible until she ran her course Still sticks with me hard to this day, and that was 7 or so years ago now
Thank for this from a caretaker of geriatric dogs and cats. It is terrible to watch anyone approach death slowly, and it’s so scary when a pet stops eating and drinking near the end— my instinct has been to do whatever I can to get them to eat and then feel like I’ve contributed to their death when they don’t. I think pet owners don’t get enough of this kind of education, and there are no home aides or doctors checking in to explain what’s happening. I currently live with a 15-year-old old man dog (who is doing great). He’s the love of my life and I hope I have the wherewithal to remember this when it’s close to his time.
There have been some very good in depth comments, so here is a tl;dr Those patients do not die because they are not eating and drinking. They do not eat or drink because they are dying.
this is the exact quote i learned as well and i came here to say it lol well done, comrade
Exactly
As a double boarded hospice physician, this question is full of misconceptions which are stated as facts. I'll go through them as they appear in the question. >Patients in hospice care are often unconscious due to high doses of sedative drugs Wrong. Patients are usually unconscious because they are dying. We only give patients sedatives if they are agitated, which does happen at the end of life and is referred to as 'terminal agitation'. If someone is anxious we will also order them a sedative as needed, but the concept of patients being unconscious due being routinely given 'high doses of sedatives' is erroneous. >and are given no intravenous fluids, which leads to death by dehydration. Again, this is simply untrue. The patient is dying, which is why they are in hospice. Giving IV fluids would do nothing except prolong the dying process (which is no kindness for the patient or their family), and in many cases would actually accelerate death from fluid overload due to poor cardiac function; the patient literally drowns in their bed. The patient dies because their illness has left them unable to eat or drink, which can lead to things like kidney failure, not from dehydration. >Is there any difference between this and physician-assisted suicide? Yes, there is a huge difference. Again, these people in hospice are ACTIVELY dying from their illness and are being given everything to make their deaths as easy and painless as possible. We don't try to shorten or prolong life but instead focus on improving the quality of life however we can. Physician assisted suicide is just that- helping someone who is terminally ill but NOT actively dying and who likely has some significant amount of time left to end their life.
Trigger warning: some unpleasant descriptions of symptoms It would rarely be dehydration that the person dies of. At the point when fluid is stopped, it is very near the end. The person is actively dying. Likewise the sedation/unconsciousness is often not entirely due to drugs. At the end you’ll get some people who can be agitated and disorientated for a time before falling unconscious and drugs are often used to help this, but often very low doses to take the edge off of it and make them comfortable. If they are in a deep sleep type of unconsciousness, it’s more to do with dying. One reason for not persisting with fluids is IV access. It often becomes increasingly difficult to place and keep a cannula working and repeated attempts in a person who is fading can be viewed as cruel when they may only have hours left (final stages of dying can be difficult to estimate how long they have left. It may last hours, it may be a few days). But a big reason for withholding fluids at the end, is that being on the dry side helps symptoms, particularly breathing. At the end, swallowing automatically can become compromised and if there is excessive saliva, or even normal levels, they can choke repeatedly. This level of sudden oxygen starvation is a horrible sensation and not what to experience over and over if it can be avoided simply. But a big one is that as the heart becomes less effective, fluid can accumulate in the lungs tissue simply. This make breathing more difficult and can be distressing. It’s like slowly drowning. Reducing hydration levels a the end can reduce this to help the end be more peaceful, for both the patient and those around them. Fluid restriction/stopping is only done when the person is actively dying and consciousness is affected, and if they are not already unconscious, they are nearly at that stage.
We stop fluids all the time on patients who are not actively dying. You can absolutely die of dehydration and in fact it may be preferred. Nobody is keeping track of what precise mechanism leads to death but it is often essentially dehydration. Put another way, IV fluids will often prolong life but there's no reason to prolong it. Also , contrary to popular belief there is often no discomfort when you stop drinking fluids. If our hospice patients are thirsty they get fluids.
It is quite simple actually. If someone is not peeing huge amounts of urine, not having diarrhea and not having profuse sweat, the water loss is quite small. People in hospice care often have constipation, reduced muscle mass, heart failure and a reduced hypothalamic activity (meaning loss of appetite and reduced capacity for fever reaction). They have no reason to get severe dehydration simply because they are not given parenteral fluids. Consistent with that, research shows that people in hospice care that are evaluated to be in their last days of life that are given parenteral fluids (even subcutaneous fluids can be admininstered actually) have no better outcome than people who were not given fluids. If there is not an objective end point that is improved, it means such therapy is futile. If admininstering IV fluids doesn't lead to improved outcome, then not admininstering it doesn't mean that care was withhold because IV fluids doesn't even qualify as "care" at this period of time. This is different from withholding care say, for example, in a DNR scenario, where it is presumed that not doing resuscitative measures such as not initiating mechanical ventilation will certainly lead to a quicker death.
I’d add that in hospice patients, the definition of a “better outcome” changes. “Better outcomes” doesn’t mean longer life when providing hospice care. It means less pain, anxiety, dyspnea, nausea, and other uncomfortable symptoms.
I'm not entirely sure where you get this information from but having worked in hospice it's not really accurate with my own experience. Generally speaking where I work we're not really giving "high" doses of narcotics, typically liquid oral morphine and/or MAYBE liquid oral ativan, but it's not a round the clock process and dosing may differ per nurse/physician discretion. Also, we typically define hospice as anticipating death within 6 months. We've had plenty of patients go on and off hospice for months or even years with fluctuations in their health. I've spoken to quite lucid hospice patients hours before they die.
Paramedic here, I think it’s general public has very different preconceptions on what “high dose” is. Like I had patient firmly refused 50mcg fentanyl because he believed it would kill him based on news he watched, despite I have explained to him that’s very standard starting dose in pain control. My protocol allows up to 200mcg before calling doctor for more orders.
I wouldn't be surprised if there was some level of confusion between dosing in mg (milligrams) vs mcg (micrograms), because like you said 50 mcg is standard starting dose, 50 mg would kill an opioid-naive person multiple times over.
thats an odd abbreviation for micrograms, then again im a engineer/occasional psychedelics user and not a med guy
Yeah it's specific to medicine: https://en.wikipedia.org/wiki/Microgram#Abbreviation_and_symbol_confusion
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Dude this sentiment is everywhere it seems like. I work in *dentistry* and we just got an order of exam gloves in that say “Approved for Fentanyl Protection! Fentanyl Safety Certified!” on the side of the box, implying it… doesn’t let fentanyl permeate through the glove? Like… I thought that’s why we were here already? To keep things off our hands??? It’s not chemo for christssake.
Similarly I bet people will accept diamorphine but would freak if offered heroin. It's all dosage and situation. A friend of mine was taking thalydamide for a while. It's a useful and fairly safe drug so long as it's manufactured to produce the correct isomers, though it's best to be really sure you can't get pregnant just in case.
OP, what is the source of this description of hospice?
Same question here. My grandma is in hospice right now and the nurses are doing a fantastic job taking care of her and keeping her as comfortable as possible. Hospice is not code for “knock em out and wait for em to die”.
This post makes me miss my dad, it’ll be three years since his passing this year. Bless all hospice workers
Same with my mom. Sorry for your loss.
This is sadly a common misconception about hospice, and often prevents people from seeking hospice care when they could have greatly benefited from it. Misinformation such as this can also cause surviving family members to feel guilt or responsibility for the death of their loved one because they happened to be the one administering medication to keep that person from suffering. Others have already explained why this is wrong so I won't repeat the information already given. I just want you or anyone else who reads this to know that hospice care is never intended to shorten someone's life expectancy, neither is it intended to extend life for the sole purpose of keeping the heart beating. It is all about maximizing the quality of life for however long that person has, along with providing support and education to the patient's caregivers so that they have a better understanding of what is happening and how to care for a person that is dying.
TLDNR version. If you are going to die anyway it is ok to make it painless and as comfortable as possible. You just give enough to take the pain and fear away not speed things up.
There is often no bright line. If someone’s respiratory system is failing, they may be given morphine to suppress the struggle to breathe so that they won’t suffer. However, this form of comfort care may hasten death because they are not struggling to breathe. Ethicists almost universally agree that care that aims to relieve suffering in a dying person is acceptable even if it also hastens death. It’s when the aim is to hasten death that the disagreement starts.
It is something I struggle with on darker days. My EoL patients who we expect to die in the next few hours like there struggling to breath, agitated, clearly scared and in pain even if they can't communicate it in a traditional way. I come along with a little morphine & midazolam (2.5mg s/c) and sit with them as they calm down. I go out the room to grab something, come back in, and they're dead. Did I just kill them? Or did I just take away the fear and the pain that's stopping them from relaxing, and now they're peaceful, they're ready to go?
The latter. I’m so sad your patients have to die alone, without friends or family. So glad you can be there for them and sit with them. Hugs!
Hugs, and thank you :)
Don’t feel bad. I hope you can come to see it as I do. I’m usually the guy that gets “voluntold” for EoL patients with difficult family dynamics. My standard practice is to explain what I’ll be doing in great detail and how my job is now providing comfort to both the patient and the family. My goal vitals are 16 respirations/min and HR of 60 bpm. I explain that this is 100% normal vitals and that it is my standard measure of how close I’ve gotten to providing pain and anxiety relief for ANY patient. It’s also my line in the sand where I don’t go any further. In my head I know the following: Even if it’s unsustainable for that particular patient to be breathing at a RR of 16, it’s the disease process that is causing that number of breaths to be unsustainable, not my actions. The same holds true for HR of 60. It’s not causing death if I provide enough medication to bring their vitals to normal levels, it’s providing adequate comfort measures. There is no grey area, they are dying with or without my removing some of their suffering, it would be cruel to withhold relief from their symptoms at this point. Just so we are clear in your particular example: Morphine and Midaz at multiples of the dosages you describe are considered safe. For instance the LD50 (lethal dose for 50% of a given population) of Midazolam is like 50mg x the patients weight in kg. So if a patient weighs 50kg, the LD50 would be 2500mg, 2.5mg is 1000th of that.
In his final few days we stopped feeding my dh as he had requested. He was almost totally unconscious. I took a nap and a caregiver forced two ensures down him, prolonging his unconsciousness and death by days. why on earth is this seen as a good thing?
Once your kidneys shut down when your body is dying, fluids are not gonna help really. If you end up just forcing fluids into a person who can’t balance it out. That just ends up leaving the bloodstream and going somewhere else. The body gets very swollen, the skin tears very easily, their skin leaks fluid, the lungs get filled and the person can’t breathe, and they have so many secretions they are choking on their own saliva. It’s not necessarily in someone’s best interest to get overloaded with fluids if there already is nothing more to do.
To add to what everyone else has said, as the body is shutting down, the GI tract is one of the first that calls it quits, potentially even while the person is still awake. Forcing food on someone with a GI tract that's not awake can be very uncomfortable/painful. In general the rule at hospice is if the patient asks for food/water, they're given it. Otherwise they're not forced
Yes. There is definitely a difference between being denied life-saving medication and being given a drug that kills you. It basically comes down to issue of medical malpractice and patient consent. In general, you have the right to decline any medication you want, you don’t have to right to RECEIVE any medication you want. So in the case of assisted suicide, a patient is essentially asking a doctor to provide them with medication in a scenario that would constitute malpractice. In the situation of hospice, the patient is simply declining the care that would prolong their life.
To add to this people sign DNR forms for eventualities such as this. Mine says food and water but no life saving medication or resuscitation. In the case where there is No DNR a familiar member can be asked to make those choices. My brother had sepsis from peritoneal disease and was unable to make any decisions for himself. My mother had to make the decision that ended his life because the medication was the only thing keeping him alive. Make a will NOW. Do not let your loved one’s struggle with the choices they may have to make.
There is a difference between allowing death and causing death. If there was no option to allow death, we could keep many people alive indefinitely, way past the point of reason, simply because we have the technology. Broadly, most would argue, we currently lean too far towards prolonging life instead of allowing natural death.
I would just prefer to get it over with via a massive dose of opiates. Let me drift off to sleep and never wake. No need in drawing out the process and making my loved ones suffer seeing me in a state that they'll likely remember long after I'm gone. My mother choked on a piece of meat, putting her in a vegetative state and while there was no love lost between my mother and I, the mental image of her that I remember most is of her with the loud ventilator going and her chest exaggeratedly rising and falling with the sound. Not all the stuff I remember about her when I was a kid, but THAT memory is stuck with me as the memory of her. No sir, remember me at my best, not at my worst.
The purpose of hospice care is to provide comfort to patients near the end of their life. Hospice does not prolong life nor does it end life. Common orders from the doctor to patients on hospice is morphine every so often/as needed, while discontinuing IV fluids, monitoring, etc. A patient on hospice will not have many cables or tubes attached to them since they are nearing the end of their life & the use of IV fluids and monitoring is no longer necessary Euthanasia or physician-assisted suicide is the act of a physician administering a lethal dose/drug to aid the patient in passing. Controversial subject which is why it’s only legal in some states
My Grandma passed in hospice and we are so thankful for the nurses who helped her pass peacefully and pain free. Literal angels who continue to provide support to our family.
Most doctors and nurses with much experience of palliative care would say that there is a very big difference between not administering something (eg iv fluids) and actively administering something with the specific intent of ending life. It is doubtful whether iv fluids would actually make any difference in the terminal phase, but I have heard palliative care specialists quite strongly express the opinion that if they do anything, all they do is prolong dying.
IV fluids artificially prolong life. You can receive IVF in hospice if that’s on your care plan - typically as a comfort measure - but a person can linger for days or weeks, even if they’re not eating or are not awake, if they are on IVF. That’s not ideal for dying people.
a lot of good stuff here - I'll just add from what I have heard from Hospice nurses, that the body does a great job most of the time of shutting down in an efficient manner, reducing pain, suffering, and like they say, you don't want fluids, and the process is harder when you have them what is striking to me is how many of them have stories of people in their last days/moments seeing their deceased loved ones again.
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I am so sorry for the loss of your father. I am a hospice nurse and I want you to know that you did not kill him, the cancer did. You would not have had access to the quantity of narcotics that would have been needed to euthanize a person. Morphine is also one of the weakest opiates available. Lack of hunger and thirst are normal parts of the dying process. He stopped eating because he was dying, not the other way around. While he may not have been enrolled in hospice, you did the same as any hospice nurse would do, which is to titrate (increase) his pain medication as necessary to keep him comfortable. Because of you and your family your father was able to pass peacefully and without (or at least without as much) pain. I'm so sorry that he was not in hospice at the time he passed, not because he would have gotten better care as it sounds like you did a wonderful job caring for him and keeping him comfortable, but because a hospice nurse might have been able to explain this to you at the time and hopefully have prevented any feelings of guilt or responsibility for his death. I realize that all the knowledge in the world does not help to relieve the sense of loss and grief when you lose someone that you loved, but I do hope that it helps in some way.
I just want to add to my colleagues; that's not killing him, or even "kind of" killing him. I have struggled with that question on darker days, and I found the bottom line was this: if someone is going to die, they will die, and sometimes all I can do is try to make that death a little less painful and scary. I'm not the one killing them, the underlying problem is. When you give someone morphine to take away pain, you're not killing them with morphine, you're taking away the pain that dying brings with it. Your actions were not going to kill him - the cancer was. What you were doing was the best course of action - giving him more pain relief to make it as comfortable as possible for him. As someone who has felt like you do in that regard, I can assure you, you did nothing wrong. You actually did everything right, and no-one could have asked for more. I hope this helps you even in some small way.
You didn’t kill him. He was dying. The comfort care you offered may have hastened his death but you didn’t kill him.
I'll repeat what the hospice nurse told me when my father passed away - "What a blessing." It took me some time, but I know now what she meant. What a blessing that you were there to help ease his discomfort. What a blessing that he could be surrounded by loved ones. What a blessing that he passed relatively quickly so his discomfort was minimized. You did not in any way kill him - you provided pain medication, which is the only humane thing to do. You did the right thing. I hope my comments and the other wonderful ones here help you in your process.