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Holy Cow! I guess I'm guilty of murder because I got hospice involved when my dad had an aggressive stage IV glioblastoma.

He could neither talk or walk towards the end and lost half of his body weight.

I agree with jeanne, to throw around words like murder is just despicable for those of us dealing with end stage terminal disease.
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DHilBe, guilty of murder? Guilty of Murder?! OMG What person in his or her right mind would agree to be a caregiver if a "wrong" decision meant being guilty of murder. Whew!
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well said
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4/2/2015 just backtracking on the posts in this category to catch up...and , Pam, in answer to your March 17th post about " ... they panic, call 911 ...rush to ER, ..... I say "yes", if it is necessary to relief certain conditions that are painful and painpills are not indicated, such as my father retaining fluid, which needed IV infusions several times to correct his electrolytes - after which he changed into his old self, talking , aware of his surroundings, and could be taken home, even telling me to watch out for a stopsign, where before he was so ill feeling.... Hospice could not give these IVs. and father never said I want to die.... This treatment also passes as pain-relief...
Knowing that those IVs helped, made it necessary to decide on ER-visits... If one knows what can help, or one thinks the ER might have an answer and the patient does not say " I want to die", one has an obligation to follow one's concience of " what's right + what's wrong to do according also to one's religious convictions " to seek that help, or else you are guilty of murder ... Obviously not all cases are so clear to diagnose or not all folks know the medical intervention necessary to keep from being guilty of murder by neglect, and that does make THE difference - if you don't know - you have to trust the medical personnell to guide you... and you can only hope that they do not deliberately rush your loved one to the eventually inevitable death.
It's the eventual death every one accepts... it's the rushing it... which most folks object to.... I wish you all well.
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Bry 1069 it is wonderful to hear such a wonderful and mature post on the end of life issues your family faced your Dad's death. It is always a difficult and emotional time for everyone. There is always a period of mourning which has recognisable stages which includes anger. Everyone takes a different time to work through these stages and some get stuck for a long time if not forever in a single stage. Support can be so helpful during the grieving process be if professionall, friends or family. Thank you again for your insightful words.
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Veronica91 I cannot speak highly enough of the hospice nurses that trended to my Dad. Incredible people that I don’t pretend to understand… that is not something I could do for a living but I am so very grateful someone does.

I think I understand some people’s feelings on this subject matter. I too was temporarily concerned that we might have contributed in some way to Dad’s end given that we were consulted at each step of the way, everything explained to us in great detail and part of this process was the upping of medication. However, this was temporary.

It is difficult to try to be pragmatic, impossible perhaps for some individuals or at certain stages but eventually, we must try to be. In my case My father was a very intelligent man, aware of his circumstances and in the early weeks often spoke freely about it. Assured us not to fear, to not suffer and that any decision we made would be the right one. He remained that way all the way through, up to the point he became confused as a result of his illness and even then there were periods of clarity in which the realisation he had suffered delirium and that during these times he was agitated at times aggressive towards people like my Mother, who had been there every moment of every day was heart breaking and if anything even more painful for him. That is not what he wanted to do and certainly not who he wanted to be.

My Father and I didn’t really have any profound last discussions he/we just all spoke openly about what was going on. He did however have one last request of me and that was to get on with living my life. I believe that would not be possible if I spend from here to eternity questioning what ifs. He may well have lived a little longer, I really couldn’t say but I do know he was distressed, in pain and confused for a vile period of time and then he wasn’t, shortly after that he passed, peacefully.

Very little time goes by that I don’t think of him but I am trying to do as he asked and being pragmatic or at least trying to be is a part of that process. Having said all this of course no two of us are alike. We must deal with it in our own way.
Anyone who truly feels they or their loved ones have been wronged should speak up. I would only ask that you consider as many of the facts as you can, see beyond there here and now and all that that means, as difficult as that might seem. Terminal illness is just that… we are going to lose them… however hard we try to hold on. I know every last second is precious but in the end has it become more about you and what you want and need or them? If you still answer no I/we were wronged then I totally support your right to do so and encourage you to speak up.
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I wondered if they had the training ... Every one they came into moms room Had LPN badges on , never saw RN ... my RIP youngest sister was an RN .
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LPNs should not be handling the narcotic doses.
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Trulyspoken50 I as well told them they were over medicating my mom 3 weeks ago after admitting her to hospice she became unresponsive
They kept giving her the usual morphine atavin combo, ' to keep her comfortable' really it made her where she couldn't swallow or breathe and the meds kept her in that position TIL she passed away total of 15 hours in hospice.
If this is how hospice really works, why deceive the public, be honest and admit the combo of drugs actually hasten death.
I told the nurses when I was on my death bed. I was given morphine & it didn't kill my pain, they told me bc my mom was dying it's differevr, wtf I was on my death bed & lived These ppl are clueless since they never experience near dearh or death itself.
I'm pretty certain hospice nurses which are actually LPN's are brain washed about how the drugs really work.
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I am sitting in a hospice room with a dying parent right now and I can tell you at 4 pm he was talking, alert, and oriented. By 5:30 pm, within 20 min of getting here, he was comatose. Unresponsive to voice or touch. It's been 9 hours now, the doctor has come in and I strongly confronted her about it repeatedly- how he has obviously been overmedicated- with morphine subcue and zofran. She SMIRKED repeatedly. Asked me repeatedly "What did you bring him here for?" I had to tell her repeatedly, "He is being overmedicated." She told me defiantly "OK THEN I WILL ORDER THAT WE HOLD ALL MEDICATIONS", it was as if she was trying to get back at me, by going the total other direction and denying my parent ANY medication if he needed it. I am telling you, I have seen this before when people are ADMITTED to an inpatient hospice facility, they go from "talkies" to zombies. It's happened to my parent, and I'm trying to bring him back. It's heartbreaking. So for you idiots who don't believe it, keep your head buried in the sand. Hospice is as much about helping people "live" their last days as planned parenthood is about the welfare of babies.
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Hope22, thank you for your kind words. It is still hard to get those days out of my head. You feel like you made the wrong decision. But as I said we weren't given a choice, and didn't know too much about hospice.

When I first called their corporate office the woman tried to apologize, I said "don't, this can't be undone, no do overs. This isn't like a bad meal in a restaurant, this can't be fixed."

I'm glad to hear your mother is doing better.
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I am saddened that so many have had such awful experiences with hospice, but I have to say that I do not know what I would do without our hospice team. I love them and they have become like part of our family. I know they love Mama and do everything they can to help her...I know there are always exceptions, but again, I can't say enough good things about our nurses and care providers with our hospice team...We have the comfort care pack and I have used the morphine four times in all and that was to help Mama relax a bit and breathe easier and the nurses instructed me how to administer it and such. But our team does work extremely closely with us and the doctors to do everything they can for Mama...and I can tell they do care...a lot....
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Bry 1969 that was a wonderful and insightful post about your feelings about the end of life.
As far as comments about thepoor care from hospice nurses it just makes me cringe. I was a hospice nurse for ten years and could not have worked with a more careing and compassionate group of women. the slightest complaint about a nurses practice was treated like a cpital offence and our supervisor never ceased to fire people who she felt did not have the right attitude. We were a very small rural hospice a not for profit which does seem to make a great deal of difference in the standard of care from some of the for profit ones.
our phiosophy was to make the remaining time a patient had left as pleasant and painfree as possible. Yes we did use large doses of Morphine and Ativan but never with the object of ending their lives. Would you rather see your loved one resting peacefully or thrashing around in pain yelling for some one to please end this or lashing out at his nearest and dearest or chasing the nurse out of the house with an axe. We used what was prescribed in the quantities needed to relieve suffering.
morphine has such a bad rap because it is the drug most often used. the reason is that it comes in a liquid and can be dripped into the patients mouth with a dropper when they can no longer swallow. Do you want to watch your loved one suffer with a breathing tube and ventilator when you know they are dying. some nurses do not have a good bedside manner like some Drs and may not be in the right part of heathcare but it may not be possibel for them to work the hours needed in other field. i am not making excuses but just get upset by all the nurse bashing that goes on with hospice care. You may be loosing your loved one but it is very hard to nurse people you can do nothing for but give them a comfortable death. All your patients die from tiny babies to 100+ year olds you can not make any of them get better. Nurses and Drs are trained to get people well again. Do you ever wonder how many nurses go home in tears after attending a death and sharing in the patient's family grief. Wipe your eyes blow your nose and walk into the next house with a smile on your face appologising because your sinuses are acting up and you just came from a house full of cats. It is not an easy job and many burn out quickly. In a for profit hospice the work load is very high and the pay poor so corners get cut. the executives have to get their high pay and bonuses. By all means report the bad care that is the only way thing get changed but remember nurses are people too and have feelings.
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Thanks Veronica...I know He will. I have stopped praying for what I want and have instead begun praying that God will just do what He knows is best for Mama and for me and I will trust Him to see us through it all. I don't know that I will ever just be really ready to lose Mama, but I do know I do not want her to linger for me and I have told her that...we have had several talks even and I have told her that we love her and will be sad, but we want what is best for her so for her not to worry about us..we will be together again. And I do believe that....One of Mama's baby sisters came this week and was shocked to see her talking and laughing the entire time they visited....our Hospice has been really good to Mama and to me... I just wish everyone would have been able to have the kind of compassionate assistance we have....
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Dear Hope there is a time for everything.
A time for God
A time for Mama
and a time for you.
I think God sees that you are not really ready yet and leaves Mama in your wonderful loving care a little longer.
When the time is right it will be right for both of you and the angels will come and lift Mama up. You may even catch a glimpse of an angels wing. When the time gets close be sure and leave a window a crack open so her soul can rise. Even when her physical body has died her spirit may linger a short while just to reassure you
You can only pray that God will make the decision about what is right for you both. Do not be afraid Hope. God is with you
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I feel exactly the same way rosie123. My Mother had COPD but her response to Morphene is exactly the same as you describe while she was having trouble breathing, she was able to calm down and eat and have a conversation with me until they added the Ativan and Morphene pump then she could respond for about three days, although she was pretty drugged, and then she was seemingly in a death coma. It's hard to live with our decision to go to Hospice. I'll always wonder and never really know if things would have been different in The hospital. My research on the internet doesn't say too many positive things about Ativan and Morphene combination except that it's a toxic mix. I often wonder if a healthy person could survive on this same mixture.
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Yes, same happened here .. My dad was admitted to The ER.. On Feb19 2015 & same day transferred to ICU & we had to make a quick decision based on what they were telling us about his health condition & he got started on the morphine, Friday night & by Saturday he was no longer responsive or alert.. I hate my self for ever agreeing to this.. Now I feel like it was our worst decision ever.. & he he only lasted till Monday afternoon .. Then passed away, on 4 days & he was gone.
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To Candee... and all reading this blog... I just went into this site, hospicepatients /this-thing-called-hospice.html ... "Stealth Euthanasia: Health Care Tyranny in America " .
"Copyright © Ron Panzer 2011-2013 HTML/web version of.....etc.
Notice the date : 2011-2013....!!!! Now I wonder that the statements in that rendition were uttered prior to "Obama-Care" having taken effect..... Wonder what changes... hopefully IMPROVEMENTS Obama-care would or could bring .?????
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I never thought I could ever reach the point where I finally began to pray that if this was all there was to be for my Mama, that God would gently take her home, because as much as it hurts to even think of losing her, nothing hurts more than seeing someone I love so much when they are having those bad days, seem to fight and struggle and have such a sadness in their eyes....I have been mentally preparing myself for so long that I imagine it is going to be quite a shock to go from all this to sudden quiet, stillness, peace...not just to me, but for her. My Mama is a good Christian woman..in my eyes the finest lady who ever graced the planet...I have really been blessed with her and with the chance to be here and spend all this time with her...Amazingly she has again taken an upward turn now, is laughing and talking again, so once again, I know it is just not yet in God's time to take her...but I know I have reached that point where I want what is best for Mama, even if that is not necessarily what I may want to face right now, I want Mama to be happy....and whole..and if that means leaving me..for now, then I will be able to let go...I think all we can do is take one day at a time..cherish the time we have, try not to question too much...most of the time it is in the past and nothing can be done about it now, and I do believe that one day we will see clearly all these trials and worries ..faith is all that gets me through these times...but none of it is easy...and it takes a very long time to get past the pain of losing them...
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Do not blame yourself nor question how the end came about. Just take comfort from the fact your loved one is no longer suffering and I don’t mean physical pain. However strong or nonchalant the individual may appear on the outside we only really have some small insight in to what is actually going on inside. I don’t actually know but my theory is this, we are preprogramed to want to live and breathe from the moment we can to the moment we can no longer… it’s fundamental to being human. Momentarily imagine knowing that will soon no longer be, you will no longer be and all that that means. Whomever and whatever we are, however rich or poor we perceive ourselves to be and I mean in every single sense of the word rich, all will soon be gone. For all we know, in to forever dark and nothingness which even in the depths of life ending illness we are likely able to contemplate and probably more fully than anyone free from illness ever could… dreaded fear and agitation will almost certainly follow. Compound that with the emotional factors involved anyway in an end of life scenario and physical pain, delirium bought about because of the condition and/or medication and knowing between times they are very much not themselves and that the people they love most in the world are suffering also a release from it all is a blessing. I lost my father recently to bowel cancer which had spread and he was released to us for care at home having been given a matter of week’s expectancy. He bravely fought on for a couple of months, within much of which he was able to be in good spirits and we shared precious time for which I am grateful but the last few days were terrible for him and heart breaking for my mother and us. He was resistant to much of the medication. Seemingly under for only a few hours then would fight his way back to beg for water we couldn’t give him. Before the end we had to watch him choke on his own fluids… we tried to do what we could obviously moving him, trying to clear his airway but there’s only so much you can do. All that effort and the pain caused by choking and coughing. All that agitation and distress to a man who had been bedridden for 11 weeks and not eaten for 12. Luckily within the hour the district nurse arrived and administered what we were told was massive amounts of morphine at his Doctors approval in order to put him under and ease his distress. He remained seemingly peaceful for another 24 hours and passed away in the early hours of the next day. I am quite sure it was the morphine that finished him but there are so many reasons why it was the best thing for him, some of which I have tried to touch on above. I miss him, for the first few days between heartbeats it felt like and I’m still at the point where I’m unable to properly understand he won’t physically be here again but rather this than what came before.
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Irish..oh I am so sorry...no there are no do overs for sure...reading your post breaks my heart and makes me really angry with this provider, I just can't imagine people like that even being in health care....I don't even have the appropriate words but please know I can completely understand your disdain for this provider...I'm so sorry...when things happen this way at the end of someones' life it leaves a very painful wound that just never seems to heal. At the passing of my Daddy, it was not a hospice issue but something else that caused our family a great deal of grief so I do understand how that kind of pain lingers....I have to believe that after those we loved have passed, they have some kind of knowledge and knowing that we did the best we could and if they could they would tell you so....so sorry...prayers are with you...
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Hi Hope, unfortunately that is how it was. No choice given or we didn't know enough to ask more questions. Doctor(who was very nice) said "I'm sorry there is no more I can do, hospice will be meeting with you".

Horrible experience, social worker was nice the nurse was a b**ch. She would say things in front of my father "her blood sugar is 24", my dad as was I was having hard time grasping she was leaving us, my father asked "what do you do", her answer "nothing" and she walked out of the room. That is just one example, there are more.

We left my mother about 2 hours before she passed, the phone rings and this woman who doesn't identify herself asks if she is talking to the husband or the son, I said son, she says "this is Debbie from hospice, your mother is dead"....just like that, no "I'm sorry" or "she passed", I thought what if someone was by themselves, what if my dad answered the phone.

I will never forget that.

I complained to the hospice about two weeks later, and than thought that's not enough, so I reported them to the state, and like I said they found violations.

I guess hospice care does vary, but when it's bad there are no "do overs".
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jdrrn40...bless your heart...I am sooo sorry you and your husband had to go through this with hospice....My heart just goes out to you. I think hospice services must vary wildly and maybe even statewide or regionally...

Irish, I personally was absolutely given a choice of "signing on" with hospice...so whether there is a difference where you are I don't know, but the doctor came in and spoke with us when Mama was in the hospital with pneumonia and had become totally bedfast and the doctor suggested we talk to a hospice provider and recommended that we do so, but the hospital definitely did NOT just put Mama in hospice...so I think there is just a difference in the provider, the region or whatever..

I hate to hear when someone has such a horrific experience with hospice..I know our first provider was not nearly as sensitive to my Mama as the one we have now, but our current one is excellent...once again, it must vary wildly..and that is so sad, when the goal should be palliative care for the patient and assisting the family and patient along the final journey...so horrible that some apparently do not subscribe to that...again, I'm so sorry...
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Jdrm40, so very sorry for your loss. Interesting to hear an RN comment on this.

Babalou, sign up for hospice????? We weren't given a choice with my mother, was told in the hospital that the woman from hospice is here to meet with you. There was no choice given, do you not get that hospitals ship the person to hospice?

You don't know what you're talking about.

There was no choice. The hospice was horrible, I reported them to the state, and onsite unannounced visit was done and violations in regards to care and rules were found 3 months later.

I did that for other families.
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I am an RN. And my young husband was diagnosed with appendiceal carcinoma a very aggressive cancer. When the disease became metastatic, the bewildered doctors wanted to try a bronchial wash which he was involved with that decision. But, he wanted reassurance that he would be able to see his family again no matter the outcome. Well, the outcome was that he was put on a ventilator. The cancer was in his lungs and the doctor thought it best to give him large doses of duiladid to put him in a irreversible coma so he wouldn't be burdened with the bad news. I did NOT want this... But his mother was power of atty. because he and she thought I was not strong enough to make end of life decisions for him. Well, hospice came in like there was a pot of gold and quickly started their concoction of death drugs. They gave those d*mn drugs around the clock even when he lay still and no signs of any discomfort. He had a little oxygen and that was it. I was furious!!!!!! You know why? Those hospice b*tch nurses came in wanting to take his oxygen off because he wasn't dying quick enough. He lived 4 days even when those meds were given so frequently. My husband was 39... He was an Army Ranger winning the Best Ranger Competition in 1998. He was the strongest man I've ever known. I do not understand how someone in my profession could do this and not sound off alarms of this style of hospice care. I've heard that the hospice nurses get an order to fast track a terminal patient to end of life. And I know my husband was .... You hospice nurses doing this, shame on you... You make me sick and you do not belong in any field of health care!!!!!
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Treating a seconday infection comes under the same heading as pain relief. It is done for the patient's comfort in consultation with the patients caregivers and the patient's ability to take the medications. If the family wishes to have agressive antibiotics via IV's they are perfectly free to leave hospice and take the patient to the hospital. They can always return to hospice at a later date.
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Dear Babalou, do you understand the difference in Candee's remark...?
Father was terminal, that does not mean we have to neglect their care or deny or neglect a secondary infection, to hasten their death !!!
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People can accept that the person is terminal. They just can't accept the hastening of death.
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People who don't want Hospice care for their loved ones shouldn't sign up for that service. If you don't accept the fact that what s/he has is terminal and that measures will not be taken to cure, only to relieve pain, then don't sign on.
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I do think my loved ones death was hastened.mi e posted in this before elsewhere. I just got done reading Stealth Euthanasia

It is excellent, insightful and most importantly validating. I don't care how many hospice nurses deny this is happening. I do believe there are great hospice nurses that would never do this. I think they are so horrified by the idea they won't admit it can happen or they justify over drugging a person to death (I'm talking about old&idemented patients, not patients in pain. I actually support assisted suicide.)
But it DOES happen. Get on that site. Read the book. Deaths ARE hastened by some hospice providers.
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