Did Hospice rush your loved ones death?

I have been attacked so many time I simply do care anymore, I have learned there are a lot of mean people in this world and it is best to just ignore them. I have enough on my plate now dealing with my wife's father and mother. My wife's father is 93 blind, deaf and bedridden. My mother-in-law has dementia and requires care 24/7, what many do not realize is the burden it puts on the family. My wife, sister-in-law, her aunt and grandson have to sit with my father-in-law 24/7. He continually pulls at his tubes.
I learned many years ago how to keep house, plus keep up the lawn and house repairs, this means I have double the burdens to deal with. I am 71 years old with chronic back problems, yet I push on, why because I have too.
Now we are dealing with a parent that needs care 24/7 and the doctor doesn't seem to care, or they don't know the answers. It is very frustrating to ask a question and get a shoulder shrug for an answer.

As far a rushing death in hospice. I have been through 5 hospice situations with friends and family. My SIL was 11 days. They provided morphine to control pain ans seizures. She was not given too much, she passed on her own. My grandfather was given the same, I sat through his seizures for 24 hours until he passed 20 minutes after I left the room. The nurses treated him like a king until the very end. Mom wasn't in hospice but did not wake from surgery, for 2 days we stood bedside. The tubes removed and more time yet. My sibling said to me she was going to have them push more morphine which meant inhibiting the breathing. It was like I was not allowed to say a word.... nudge, nudge.. I knew what it meant. It was like my sibling had a train to catch. In the end did it help mom? She was brain dead as far as the scans showed. She waited until everyone was out but my dad to pass. Was she aware? In some respects I think so. Medically was it the right choice? There was no coming back so for the body to suffer until it naturally declines is a long time. Was it pushed forward? I think so but maybe only for a few hours.... in the end it was the right choice, I would probably want someone to make that choice for me if there was no return. I still have difficult thoughts about the conversation with my sibling. Seeing what I have seen in the medical field over the years is the body can only take so much. If it is that far along decisions have to be made but it is still painful. The nurses in hospice are truly angles, we only see one patient, they see many and can tell when it is time.

Also from the original question---I had a dear uncle on hospice care in his home and our entire family is convinced that the hospice nurses hastened his death. He was sitting up at the dinner table happily having a meal with family, doing quite well for him one evening, and went from that to deceased within hours. It was within the time for a particular set of caregivers to come on duty and administer meds that it happened. The big thing about this is, the hospice workers were nothing but kind and compassionate to him, provided excellent care that everyone involved was well pleased with. Our family saw this as a bit of over medication that eased my uncle out of this world, something that was quickly and cruelly approaching anyway. It was an act of kindness in our thoughts.

Today my wife's father will be taken to hospice, he can no longer eat, or drink, the only way to keep a 93-year-old man from dying is to use feeding tubes. He would not want that, sooner or later it going to happen, why let them suffer? The law will not allow these people to die with dignity. I hate it as much as anyone, but there comes a time we must let go. In this situation, there is no other alternative. I went through this with 3 people in the last 5 years, all were at their end. Nothing else could be done. I only hope that I will not suffer the same fate.

So Sorry for your loss. I know how you feel.

I'd just like to say something here that I feel is good to keep in mind. Sometimes when we are overwhelmed and are really needing assistance, like when a loved one is passing, we turn to someone and assume they have all the answers. Mainly because it's their job to have the answers. But we mustn't judge ALL of Hospice by the individual nurses. In their field, they are no different than a hairdresser in her field. There are wonderfully competent ones, and there are ones you wish you hadn't come across. The big difference being that a bad haircut doesn't usually haunt us the way a bad death does. No comparison. I live in a small town, 20,000 or so residents spread out. Hospice here is different than in a big city. And each Hospice worker is as different from one another as you and I. Never, never go into any situation and feel like a victim. If something doesn't feel right, speak UP!! There are no do-overs here. It's understandable that we don't know WHAT we want to do, or HOW to proceed because we may have never experienced someone's death before. But we usually know if something doesn't feel right. Each and every person is an individual with their own personalities and agendas. If you're not comfortable with a particular person speak up and ask if there's someone else. Try and be clear about what your wishes are and when things veer off course, speak up and say what's bothering you. If they treat you like you're being difficult, so what? They're not going to invite you to dinner? This isn't their show. But when you're lost and confused, ask what they're going to do and decide if it sounds good. If not, ask more questions about it, and if it still doesn't sound good, say so. Also, go to hospicepatients.org and read. I got more info from the internet that all the doctors and Hospice people put together. You know the saying, "It's your life" ? Well, it's your death too

Yes=my sister was lying slumped in her bed and asleep=at one point she said my name clearly but in a panic. The congestion was heavy in her chest. I requested that they sit her up higher on her pillow as well as crank the bed up a bit. She was over medicated in my opinion. The process took seven to eight days for her to pass. I wanted her transferred out to receive better care but
this was assisted living facility and so she passed alone. I still have issues with her care or lack thereof.

My Mother is a strong & stubborn woman. She has survived three different cancers, kidney failure, strokes, heart attack etc. What she almost did not survive was Hospice. Now, I am not saying all Hospice agencies are this way, but in our area we only have three & from our families experience they were on the way to purposely killing our Mother before her time. Mother was very ill do to yet another UTI that she acquired in a short term stay in a nursing facility. We were told she was dying. She was having trouble getting to her PCP to been seen every three months in order to get her pain med prescriptions. We were told she needed Hospice. Hospice came in & said it was not time & that we needed to go back one step & sign her up with another agency that was pre-hospice. That agency came in & said Mother needed Hospice in the mean time Mother said she wanted to try physical therapy & wanted to be able to at least walk 30 feet. Eventually, Mother was signed up for Hospice. They immediately started to monkey with her meds. Some were dc'd & others were changed to what they said "they thought would better for her" & promised our Mother & family that if they did not work for her she could fall back to her old pain meds. This was an outright lie. Our Mother immediately changed & not for the better. Mother immediately became agitated & combative which only happened occasionally when she had a UTI or was put on Cipro. Mother was immediately taken off her break through pain med, Oxycodone & her Methadone was increased substantially. She was also on three 100 mcg Fentanyl patches & they took one away & increased the Methadone. Then the 2nd patch was dc'd & Methadone increased again & then they added Dilaudid. At each pain med increase I requested an updated med list so I could put it on her bedroom door, so if something happened to me her other children from out of state could step right in.They refused. I had to fire Hospice because I suspected the nurse was impaired. Three times she drove up to the home & drove right up over the curb onto the sidewalk. She would not show up & neither her nor the agency she worked for called to cancel. Three more times the agency actually called in sick for her, but the replacement nurse had no idea what was going on because the notes were sketchy & I had to spend the entire time catching her up. The old nurse came back & said she would order pain meds on Tuesday & on Sunday I was calling to find out where they were because we had less than one day supply left on hand. We also spoke about her bringing in wound care supplies at her next visit & she forgot to bring them, saying she didn't even remember talking about supplies. The barrier cream I was using on pressure sores acquired in the nursing home were slowly healing. It was a slow process because Mother wasn't eating as much & not getting nutrients. Hospice change the barrier cream & Mother had a reaction to it. Hospice said we do not cure, we let nature take its course. For two months they refused to change the barrier cream to the one that worked for Mother, but kept the one that irritated her skin even though on the tube it says discontinue use of symptoms last longer than 7 days.Mother was thrashing about on the new pain meds & our request for a full length bed rail was denied. They cited that they were illegal. I would find out later through the Oregon Governors Advocacy Office, that they are legal to use in a private home. I only needed it up when I left her bedroom. The second agency was a bigger mistake. They monkeyed even more with Mother's pain meds & added Haldol to the mix. Mother started seeing monsters with long black legs flying through the air chasing her. Since she could no longer walk after being on Hospice, she would thrash about trying to get away from the monsters & flip herself out of bed hurting herself. I asked this Hospice agency for a full bed rail and they refused. They increased the Haldol to 2.5 mg every 30 minutes up to 5 times in a row. I requested an updated med list for Mom's bedroom door & was refused. Mother became even more agitated & would not sleep for 3-4 days at a time; so I didn't get to sleep for 3-4 days at a time. So Hospice wanted to add an antihistamine to help her sleep. I informed them that Mother was allergic to Antihistamines. Hospice asked me what her reaction was & I said I did not know, that it was years before I began taking care of her. Hospice assured me it would be OK. I again said she was allergic & they insisted that it would be OK. It was not. Mother began punching me in the face & body, was totally out of control & throwing up a white bubble bath foam. Time & time again I was told that her symptoms were "terminal agitation". They were not, it was all induced by massive amount of pains meds. Once hospice was out of the picture I put Mom in the hospital & they put her on her old pain meds. It took over 2 weeks, but she was alert & making videos for family.

I had asked Hospice at every visit to go back to her old pain meds & said I don't understand how having monsters with long black legs chasing you for over 4 months is comfort care. Before I could file a complaint against them they falsified Mothers file & claimed that I was aggressive & confrontational and not caring for her. All because I asked questions & we both asked that she be put back on her old meds. Was that not my job as her daughter & care provider. They falsified records to make family look incompetent when we were able to keep Mother alive since 2003 when we were told she was dying. APS stepped in & forced Mother into a nursing home for a higher level of care. It just happens to be a facility that the same Hospice agency works out of. Hmmm kickbacks? Here is the higher level of care she rec'd. A 3" hole in the back of her heal that was clear to the bone & tunneling. A knee scrape was allowed to become infected & pus filled as well as acquiring a UTI from not being properly cleaned. I put her in the hospital & she was returned to a sister facility where in two weeks I asked them to watch her closely, that I felt she was getting pneumonia. Two weeks later, full blown pneumonia. Then a sever case of cradle cap. Physically roughed by three times by staff where her roommate turned the worker in. An unexplained shoulder injury, unexplained bruises, left if urine soaked sheets all day causing red scaly rash & on & on. Guess who your report complaints to in Oregon? APS! Are you f'g kidding! They forced her into the facility & this is the "higher level of care" she needs? She did not have all these issues at home. Hospice claimed I said I would not longer roll her. That is not what I said & the physician noted this correctly, but the nurses were not doing their job. They said family could voice concerns, but when you do you are a problem. Here it is a year later and my Mother is mentally alert, she just can't walk or use her fingers. Mom asked for her gun on many occasions & I had to explain that it was in another room, locked in a safe & broken; that she could not use it. But nurses wrote that "I" kept bringing up a gun. they also took three to four words per a full conversation which completely changed the content of our conversations. Don't trust these people. I will never go on Hospice & never go into a nursing home to be neglected like my Mother is.

I'm so sorry you went through all that. Horrific. Unfortunately, it feels familiar to what we experienced also. I was glad I found the Hospicepatients.org site as it was informative, but it's very hard when families and caregivers do battle. Trained nurses have a very hard time seeing past the "untrained" family member. It's a difficult time for each side to stop and really listen. And it's sad that it even feels like opposite sides :(

Please keep in mind that hospice knows when the time is near. they are loving and know through experience. It was 1/5 years since dad died, and he was on hospice care for eight months. Please do not berate hospice. Mom was under hospice care only 16 days, not enough. She suffered needlessly. Peace.

I am amazed that this thread is still going. It just shows you how intense the feelings are!

For me, I did not go the hospice route. I read everything I could put my hands on. I asked for every bit of literature I could get from every source, including hospice.

I concluded that giving up the control was not going to happen.

My Dad passed away. He was not in pain. He was not among strangers. He was on his usual mess to help control the many health issues he had, as well as pain meds. I am still convinced that it was right for him.

The question keeps coming back to control. Simply put, it is better to have control than to hand it over and wish you hadn't.

Katiekate, maybe I'm misunderstanding the meaning of your comment, but it seems that you picture having a patient/Loved One on hospice care as "handing over control" to someone else?

I can agree with that idea, but I'd qualify it further to say that we are handing over control to those who have far more experience with end of life than we do. That's a godsend for most families. I'm thankful my grandmother had hospice care. I made enough mistakes trying to do all the End-of-Life care myself, making bad decisions about forcing food, etc. Having them to give me guidelines was very welcome and made my grandmother's transition easier on her.

I'm very glad that you feel not going with hospice care, in your dad's case, was the right choice. That's all of any of us want - to feel we did what is in the best interest of our Loved One.

Well...if you read these posts here (and elsewhere on the web). A lot of them describe the events as fighting with hospice to get the care mom or dad needed. Taken off the meds for the health conditions and loved one unable to get that care restored.

I too was told that I could take him out of hospice care anytime, yet..read on..all too often the attempt to remove the loved one from hospice results in investigations by APS for accusations brought by hospice!!

I do not doubt that many people are glad for the hospice care. But, sitting on the edge of having that decision put before many people...they make decisions without real information, and they lose control when they put their loved one in hospice, then spend the rest of their loved ones life fight to get control back because of the standard of care that was not revealed to them up front.

For someone who is in a state of agony from which there is no recovering, I would opt for medical suicide. Perhaps, hospice fills that role...heavy painkillers and removal of lifesaving meds. But, if that is truly the state of affairs...then withdrawal of needed meds and administer of just painkillers and meds to calm is truly cruel. This is a slow motion medical suicide. I would find a way to take loved one to Beliguim. (Perhaps, here in Colorado that option will be available after next week). But, again..that option is not available once you give control to Hospice.

If I had it all to do again..I would have discussed all of this back when my Dad was still mentally able to understand. Back when he signed the DNR, I would have included directive on hospice and/or medical suicide. It only makes sense to be able to add that to all the other medical decision the law allows a person to make up front while they still can. Then, this topic would not even exist.

I know many people want to protect Hospice and there probably are some good ones in there but since all people are faulty there can be some bad who think they have power to rush death. I know this happened with my dad. They really have not much accountability and can justify their actions in too many instances. I was married to a doctor and when his patients went to the hospital in serious conditions he ordered the nurses were not allowed to give his patients end-of-life treatments because too many times they were too anxious to end it all for the patient. Many times his patient would recover and who knows what would happen with an anxious nurse wanting to prematurly end their suffering...according to the nurses opinion which wasn't always correct.

I'm not speaking of and rushed death. Hospice was unrelenting getting us to sign up. Mom was at a SNF. Then we never saw the Hospice people again. I called a few times and all it was, was the Hospice worker taking notes from me over the phone and relaying them to her Dr and then taking days to call me back. Mom's Dr said, You should just call me directly. One time, and only one time, they sent a volunteer to sit with Mom when I couldn't be there. The Nurse on duty said it was a woman that sat and prayed over my mom for an hour. My Mom's papers all clearly said NO RELIGIOUS STUFF. So, wasn't that great? Someone comes in when you're too weak to kick them out and preaches over you. Hospice in my town is all about the money. There was not one bit of actual "comfort" given. My Mom passed in agony and discomfort, with 5mg of hydrocodone on board. Yes, I'm angry right now. It will take a long time to get the images and sounds from the forefront of my mind. If I had taken her home her passing could have been better

I felt the same way , My mother was given so much medication she just slept , couldn't eat until she just passed , the day she went in she was laughing talking to us and trying to get out of bed, I think they over dosed her to keep her in bed and just lay there sleeping until she died , if I could do over I would have , I just thought they knew what they were doing !

KatieKate, I hear you. We need a better end of life protocol. It's just a fine line that gets crossed too easily. I begged the nurse, the doctor, the Hospice, everyone involved to do whatever necessary to let her pass. If any of you have heard of terminal agitation, look it up. And yes, it can be worse than described. NO ONE told me about this. Mom couldn't speak, mostly deaf, couldn't respond, couldn't let me know if she was in pain. Her eyes wouldn't open, then wouldn't close all the way. She was just a skeleton on the bed in torture. Jerking her body all around, drawing her knees up, grabbing at her back. She squeezed my hand in response once when I asked if she knew I was there, and amazingly said thank you once when given a pain pill. And through all of this the nurses and doctor just stood there and said 'it's the process' REALLY? I kept saying 'Well it's tortuous, so if you would PlEASE bring on some meds that will provide the 'comfort' you talked about, I'm all for it.' I was her healthcare agent, able to make her decisions, we talked about all this and it was NOT what she wanted. The hospitals and doctors are so afraid of being sued that they withhold helping someone to pass with a larger dose of something. It's just archaic and wrong. We need new legislature. Now

My heart goes out to all of you, all of *us.*

Here's the thing: different family or people perceive/understand medical comfort care differently.

Example: my father had severe sepsis in Oct 2014. I was caring for him at home and he couldn't swallow and stopped producing urine. I knew he was going to die if I didn't get him into the hospital. I called 911 and the EMTs assessed that he was able to refuse treatment even though he was clearly in serious medical trouble and would die w/o treatment.

There's more to this story - but there's 1 example where the patient doesn't understand what is best for them, even though it should have been OBVIOUS... but it wasn't and there was nothing I could do that night as I called in other family members to come help me prevent my father's death.

My mother drives up, thankfully, and she helps me to convince my father to go into the hospital. We take him in and get him admitted in the evening. I know, at that point, that he is exactly where he needs to be, and I go home and get some rest and am comforted knowing my dad is exactly where he should be. My mother stays at the hospital and hounds the nurses and staff all night, demanding they remove the embedded catheter that was the cause of the sepsis. I KNOW that general overnight staff can't do that. They needed a specialist to assess my father's situation and remove the catheter w/o creating further damage. My mother perceived that they aren't doing their jobs and she is only exhausting herself and getting herself worked up unnecessarily by demanding something that's not in the best interest of my father's care.

In the end, the specialist was called in, and it took about 6 hours after being admitted to remove the embedded cath -- not a time period that put him in any extra danger, and it was necessary to do the best removal.

But that wasn't the end of my mother's accusations of medical mistreatment.

They gave my father on IV fluids and antibiotics and did everything to clear up the sepsis and hydrate him... but they couldn't give him solid foods or even thickened liquids because his ability to swallow was so compromised.

I know that my dad is through the worst, and that these medical pros will figure out a way to get my dad better. They performed lots of scans and had therapists and different things to assess how best to treat him. Meantime, my mother is DEMANDING they feed my father, and my father - instead of resting - is getting caught up in my mother's drama, and now he's crying for food, and asking me to bring him food. I know he'll be ok w/o food for a bit, and that his hunger isn't even close to the biggest medical problem, but my between my "crazy" mom and "crazy" dad... the 2 of them were driving me to tears, and I had to leave the hospital. I couldn't reason with my mother. She knew best, not the trained med pros. They were starving him, she was sure of it.

The good news is my father fully recovered, as I trusted he would, but it took time. And my mother's incorrect interpretation of what the trained staff was doing just made things horrible for me and much harder than need be for my dad.

Death is inevitable and everyone/anyone can have a different opinion about the physical/mental state of a Loved One/patient at any given time. No legislation will change that.

I see so many different experiences voiced in this thread: "hospice killed my Loved One with too many meds." - vs - "Hospice let my Loved One suffer horribly and didn't administer enough pain/sedative meds." - vs - "Thank god there was someone there to help, because this is just an extremely difficult time no matter what, and I didn't know what to do."

There's no legislation that can help, imo, but educating yourself and communicating with staff is good. If you feel that medical staff is unsupportive of your Loved One's needs or family desires, get a 2nd opinion from other impartial medical personnel.

And, if you're interested, you can look up the sad case of Dr. Hootan C. Roozrokh and Ruben Navarro. A doctor with an impeccable record had criminal charges pressed against him (later dropped) because a nurse said "something didn't seem right" about how much morphine Dr. Roozrokh administered to the terminally ill, braindead, and chronically morphine-tolerant Navarro. Navarro's mother, due to a non-scientific allegation leveled against the doc, is now left believing that her long brain dead son was not treated with dignity at the time of his passing. Ridiculous and sad that an under qualified medical person could strip a prodigy doc's career based on allegation.

End of Life is a time that brings out the best and worst in some people. It's usually very stressful, no matter what, and suffering is inevitable for some and so incredibly difficult to witness. I'd much rather my LO or myself is sedated thoroughly and I don't care if it hastens my impending demise.

I'm rushing because I have a date tonight, Saturday evening, yay.

I had to come back though to make sure that I clarify something important: I'm not implying that anyone's anguish over your Loved One makes you "crazy" in any way. I was only speaking to my experience with both my mother and my father not trusting the decisions of medical staff when those decisions were for the best of the patient. I know your concern and love is very much valid. Please interpret what I wrote in the loving spirit it was intended.

Pam,
Nurses can't give any medicine not ordered by a doctor. The medication must be given exactly as it is written by the doctor, the milligram strength, the frequency (how often), the route (oral, injectable), etc.
I worked in hospitals 27 out of 37 years as a nurse. I have given Morphine to dying patients but ONLY with a doctor's order and giving it only how it was ordered.

Have those who have had bad experiences with hospice ever witnessed any other people dying? Do you know that dying people can be alert one day and dead the next, even without any medications? Do you know that they can be so agitated, near the end, that they can fall out of bed? Do you know what intractable pain is?
Death is complex and each person enters and goes through their stages in their own way.
But, since so many of you believe that Hospice has taken the life of your loved one, let's lobby to make Hospice illegal. The burden of caring for the complex needs of the dying patient would fall back upon the patients doctor and the family. Then the "killer nurses" would be gone. If you're lucky and can get enough signatures, you might get it on the ballot for the next election.
At the point when you are out of YOUR mind trying to care and comfort your loved one, who might also be out of his/her mind, remember that there was once an institution that tried to make your loved ones comfortable in their last days.

Some times a patient is placed into Hospice too late in the timetable, due to various reasons, such as not getting the patient to the hospital in a timely matter thus the illness expands to a point where little can be done. Or the patient didn't want medical help, or the family couldn't get into agreement on what to do.

Thus the patient will pass in a day or two, so to the family it feels like Hospice had placed a "rush order" on this patient.... which isn't true. Hospice came in to help with pain management, nothing more.

I wish we could stop this myth/conspiracy that Hospice causes the death of a patient.

SueC1957

Been a while since I've been here. Thank you for your posts and condolences. I'll try to be more sensitive to others, but my experience (though probably different than most here) with my mom, was truthfully based on economics. From hospital to limited hospice, it really was about the money. This has been the point of my posts to other members;when it all boils down to it, it really is about the money.

Zythryr, you Say you are going to be more sensitive, and the hit us with a BUT! It's like apologizing with a big BUT, you don't really mean it! I'm sorry , But......! Too Funny!

Veronica91

No biggie in mistaken me for a woman.

As for calling hospice nurses,"murderers" that was not the case with my mom. She was already dead before hospice got involved. The only one involved was hospice doc. The ICU nurses did all monitoring of vitals, giving of any medicines,etc. The NH PCP, even bowed out, and sent his NP when they disconnected life support.

staceyb

I understand and it would be nice if others here it was patients over profits, when dealing with medical folks. My experience was vastly different, and very true. All told with expenses the hospital alone made over $250,000. The room, alone, was a little over $2100 per day.

AliBoobali

I'm glad your father is a rare survivor of sepsis.

carlacrash58

I'm sorry about your mom. Maybe, they felt sleeping was best for her so she would not be awake and in pain.

staceyb-

What now? I said I'd try to be more sensitive, to others. If what I post is a help, where's the harm? Isn't that what this site is about?"

Hospital care, medical care is Expensive! Yes, it is! Especially when they are trying to save a person's life! I am sorry for your loss Zythryr. You have repeatedly been on this thread trying to discount the fabulous treatment that Hospice provides so many families, and then you come on her and say you are going to be more sensitive to others and the plight they are going or have been through. My problem with you is that you are the type of person who says Sorry....but! That is my problem with you. I can't see how you are making people feel better about their trouble with Hospice. There is no perfect solution. People who are losing a Loved one, who is at the end of a disease process or the end of their lives, all have different idea's of the way it "went down", and while most people have positive experiences with Hospice, some sadly haven't, and that is truly a sad thing. There is no BUT about it!