Did Hospice rush your loved ones death?

Sally, it wasn't you she was talking about. We have a member who is really stuck on what happened with her mother. Your input is very welcome. In fact, I would love to hear about things from the inside. I only hear about things from people who are looking on. Fingers crossed that your pain stays down and your spirits stay up.

Daddysgirl had an important point though. Staying in control of the medical care so that loved ones' wishes and needs are respected is almost always a good idea, and ideally you change providers if the one you have does not let you do that. Just my $0.02.

Sallyboo2350, you are very welcome here, and I'd like to hear more about your experiences. There is someone else on here who is obsessed with repeating her input over and over and many of us would like her to make peace with it and move on.

Thank you for the welcomes here. I have a lot of good stuff to sy about hospice. I think my illness became worse when I developed gangrene in my gallbladder. I went into respiratory shut down. My pulmonologist wanted to intubate me to save y life. My daughter is my power of attorney and she knows I would never want intubation. She told them no, try external ventilation. They used a BIPAP on me and that pulled me out of it. That was about two years ago.

Since then I was constantly in the ER and being admitted. I'd get okay until the steroids wore off. I got sick of being sick.

So in May I talked to a hospice social worker and she sent the practioners to evaluate me and get me into the program. I will be evaluated every six months and as long as I remain about the same or gradually going down hill I will remain on hospice. If I should get progressively better I will be discharged.

However, if I should go back to being sick again over a few months I can be evaluated and re admitted to hospice care.

My care is free to me. Medicare pays it all. My meds are free and delivered to my house the same day they are called in. They deliver up to midnight.

A nurse is on call for me 24/7. When I got unresponsive twice, my daughter called and a nurse came straight away and used drugs in my emergency kit and gave me morphine nebulizer treatments. She pulled me out of it both times and had critical care nursing at home for 36 hours and I was over the hump.

I have an aide that bathes me. It was 5 days a week but I cut it down to 3 times a week because I'm usually so uncomfortable I don't want to be messed with. On those days my daughter washes me down when I am up on the toilet and feel up to it.

I have nothing b praise for Homestead Hospice. They review my care plan with the doctor and all my nurses once a week so there is continuity of care

Hugs!

Jeanne, thanks for explaining that for me and helping Sallyboo right away. I have apologized to her personally by private messages, and now here.
I was out of line, cannot control other posts even if I was trying to help someone else. So sorry everybody, and especially to you, Sallyboo!!!

Thank you Sendme2help. I was new and didn't know. Thanks so much for the warm words. I'm glad I found this site to express my thoughts. I try to stay positive. I do have a topic that I want to make a new discussion on.

Everybody has their own feelings about hospice and mine are they killed my mother! No one can change my mind. Aren't they the same as Jack! Really, the moment a person becomes a patient its death by drugs.

My Mil goes on Hospice tomorrow. Years ago she wrote advanced directives for no IV, no feeding tubes, respirators or pacemakers. She has had strokes, some small, but this last one took out her entire left side. She can only swallow a few teaspoons of thick liquid, to moisten her mouth. She refuses food.
She is asleep most of the time, does not know where she is, yet she is calm and comfortable. She knows what Hospice is and welcomes it. Soon she will be free from that body, and on to Heaven. It's her choice.

Pamstegma, hi. I really like hospice. I've also made out advanced directives for the same thing. I have better quality of life now with Hospice than I did before. I'm looking forward to a mini vacation for six days and five nights. When my daughter and her hubby go on their mini vacation, I will go on mine also.

I started volunteering for a non profit hospice organization a few months ago. I'm no expert on end of life care but have learned a great deal recently. I sympathise with those who feel hospice hastened the death of their loved ones. No doubt this is a reality in some cases.

how many of us remember death of our elders before hospice became common? I sure do. I watched grandparents, who were clearly at the end and had no quality of life for years, suffer for weeks at the hands of anti drug doctors who grudgingly doled out pain meds. It was terrible.

Hospice is not forced on anyone. No one is tricked into it. Either the patient or a guardian must authorize hospice. In doing so we are accepting that the end is near.

I sincerely hope that in my final days I do not have family or a guardian squabbling with hospice caregivers to extend my life for a few more days.

This sounds a lot like my story. It bothers me everyday, I feel like they dehydrated and starved my father. I'm having a really hard time getting passed this!

The only way that hospice can extend life would be to NOT give massive amounts of drugs. If the patient does not want deadly drugs and or the family confirms it, then that means no drugs or just the amount that is agreed upon. It needs to be up to the the patient if the patient is not too drugged up to speak for themselves. A hospice , hospital or nursing home do not have the right to kill the patient with drugs.The patient does not need to be starved to death either.

KELLYD Im so sorry for what all you went through. It is very difficult when this kind of thing happens. It is not right and needs to be stopped.

Kelly, would it be possible for you to have a conversation with the hospice team who looked after your father? If you're having a painful time comprehending what happened to him and why it took so long, you might find it really comforting to get answers about the medical and nursing decisions that were made during his last days. Some people do die very hard, I'm afraid. The human body can be long past all hope of recovery and still put up a heck of a fight. Talk to somebody, don't just keep turning this over in your own mind - it'll drive you nuts. I'm so sorry for your loss.

I just lost my Dad on Thursday July 2 around 11:30 p.m. However he wasn't "pronounce dead" until 1:00 a.m. Friday July 3rd. My Dad had problems like atrial fibrillation but his main problem was that he lost most blood flow to his right leg and his leg was dying which was causing him mainly hip pain. He was a very social man and would sing and have conversations with the nurses and others at his skilled nursing facility. I am having trouble putting my words together because I am so upset! Even though he was still up in his wheel chair and need help with that and going to the bathroom and getting into and out of bed. He was still pretty alert and we would talk about the family and how to solve certain situations. I would go to the facility every night after work to see him and stay until bedtime mostly. The social worker called me one day and suggested Hospice for my Dad. I was shocked and asked him why. He said it would just be additional help for him and help with costs. I didn't react on it right away and 2 weeks later they called a meeting with my brother and I and low and behold the hospice people were there. My brother said we should sign up right away simply to help with his costs, and help with his pain. I was skeptical because of the"comfort care" they talked about. He was in pain but he was getting meds that were helping with that and we were still going for strolls and he was talking his pills, eating a little and taking his med pass and caring on conversations. His leg hurt when they changed his dressing, or when they had to move it., but meds were helping with that.We signed up on Thursday. They were supposed to OK it with us as to the meds they were going to give him. I called Friday afternoon before going to the facility and Hospice had prescribed oxycoton, oxycodone, morphine, and he still had ativen and Norco on the list. Friday afternoon, not much had changed. Saturday saw him mid afternoon. Later I called he was acting different and acting like he was going to fall out of his chair, which was unusual. They were going to put him to bed. Sunday my brother said the nurse was stolling him around when he went up there. I didn't see him that day, which I regret! Monday afternoon when I went to see him, he was in bed and we talked from there. They bought him his food but he hardly ate, which wasn't abnormal but drank and took he medpass. I wanted them to get him out of bed, but they said his leg hurt too much.Tuesday, Isaw him after work again. They had given ORDERS not to let him get out of bed, even though I requested it. I'm thinking even if you have no pain laying in bed can cause body parts to start hurting. They could give him a short term pain med to let him sit in the chair and prevent breathing problems. They wouldn't. He had wanted to get up even. Wednesday I went to see him, and he was sleeping for 3 hours while I was there and woke to being thirsty, and he drank and drank. The nurse said he had oxycoton that morning
and then oxycodone for pain earlier afternoon but that was all. About 9:00 p.m. he had another dose of scheduled 10mg of oxycoton and his Coumadin, Tylenol and melatonin. They changed his dressing on his leg a few minuted later and his brief. He was in a lot of pain. When the nurse came in a few minutes later to ask if he wanted pain med. he had questions. What is it. When is the last time I had it. What pain meds are you giving me. When is the next time I'm getting this- he's unsure about taking this med. it's morphine. She assured him no more pain meds until tomorrow about 9:00 am. He reluctantly said OK. I stayed with him until 11:15 p.m. He really didn't want me to go and I really wish I hadn't!!! I got a phone call Thursday afternoon."We need you to come. Your father has developed apnea. Should we treat it aggressively or keep him comfortable here. They were encouraging the later. I got there and in a few minutes the nurse came in to give him liquid medication. I said " what is that" she said roxynol. I said "no". She said that he was asleep so she couldn't ask him. I shook my head no. she took it away. In a few minutes I had the head of nursing come down to tell me he NEEDED this pain med to keep ahead of the pain he was in. I asked how often he was given it. "every hour". Iwasn't told that before. She was very pushy about it. What I didn't know until later was that they were giving him Ativan also. The family came. He would stop breathing for about 20 seconds and then his eyes would open wide and he would see us and try to speak and fall back to sleep, and repeat the same in a few minutes. I was very upset!!! Hospice said 72 hours. We left in a while to eat. Everyone told me to go home take something to sleep and come back in the morning. I called 11:00 to ask about Dad. The nurse voice broke and she said she had just seen him and she had to call hospice to pronounce him! I rushed down there and went to pieces!!!!! I KNOW they overdosed my dad with pain meds "to keep him comfortable" It was evident from last night that he didn't want that. I let my Dad down! and I can't get past it!!!

Smudge, I'm sorry you feel that way. Hospice is a choice to alleviate suffering, so they have a little more freedom of pain control. Hospice isn't for everyone, but they don't go around killing people. You know what they say about opinions.... Everybody has one. If it were true you could have sued and won a wrongful death suit.

You can believe what you want and if you thought this was true you could have dismissed hospice at any time. The only time they make changes is when the patient becomes better or worse. Her disease process more than likely is what killed her.

I live on hospice. Had a very bad day today and hospice brought me out of it. They aren't looking to get me to die.

If you were speaking 15 or 20 years ago I might agree partially with you, but hospice is a totally new niche in the medical field. It's not just for people with six months to live. I'm on hospice because I qualify for the care and refuse to go to the hospital to be tortured. I'm not on my death bed and hopefully I have a few more years left. Living long won't kick me out of hospice and they won't evict me from my body.

No offense to you. I just find a whole different life saving experience. I will die on my terms and not in some ER or hospital and end up on a vent and never get off.

pbfordad,

I know from experience that when healthcare providers act like they know what's best and just want to proceed with it, and they give you that look that says you are being and idiot, please let us do what we are supposed to, it is beyond hard to insist they do otherwise. Please don't blame yourself. On top of that, it sounds like their plan was to take all the cues direct from Dad and not others who cared from him, which is not always right but is the "legal" thing to do if a person is not incompetent.

Now, your Dad could have been dying from sepsis and maybe even without the extra meds and the not getting out of bed he would not have held on much longer. And his pain could very well have been way out of control, maybe they were not all that far out of line after all. It is hard to say. But wishes of the person served should be respected in any event, and they should not have reassured you it was ok to leave and not called you back.

PB, the trouble with having responsibility for your own father's medication is that you have to make decisions, but without training in either medicine or pharmacology - not to mention a crystal ball - you can't possibly know what the best course of action is. Responsibility without power is a nightmare. You could only do your best, so don't blame yourself for letting your father down. You didn't, plain and simple.

Clearly your father had some very serious underlying conditions. A nearly complete loss of blood flow to his leg, with muscle death? The pain that would have caused would have been unendurable without very substantial pain relief. You don't say, and I don't like to ask, what had caused this to happen; but since no one was suggesting aggressive interventions then it must have been a terminal problem.

But the main thing is, of course you're upset. It's less than a week since you lost your lovely father. Be kind to yourself and at least give yourself a little time to adjust to losing him.

Sallyboo2350, I'am glad that you are getting the type of care that you want, but my mother had months to live and yes i know for a fact that she would never have died two days after being in hospice. That is why i feel the way that i do. I understand that people need hospice care, only reason i made a reply was that it is true that hospice over medicates until people die. Yes I could have sued, but I was hurting so bad that it wasn't an option. Now I'am taking care of my 80 year old father and never will he go to hospice he will die the way god intends for him to die. That is my opinion.

Smudge, I pray that God will be gentle with your father, and besides may he have many happy years of good health ahead. Just please don't be too afraid to revise your opinion if things don't go so well when the time comes.

Countrymouse, no I won't be afraid to change my mind because it will always be whats best for my father. It will be his decision until he can't make the decision for himself. I have spoken with him about his wishes...

pbfordad Isn't that interesting how so many people on here completely ignore the fact that you and your dad did not want those drugs but they were forced upon him. Same situation as I was in. My mom was forced to take drugs that she nor I wanted her to take.There was even one time that I stood in between the doctors and my mom trying to protect her.All that happened was they threatened to call the security.

We are not alone, there are others who have been through the same situation right here on this site and I know of others on other sites also.It is so very wrong and against a patients rights for any medical facility to force drugs on patients who do not want them. I do believe that a patient does have a right to refuse drugs that they do not want.I think this law should be enforced. Other laws should be put in place such as informing patients of the dangers they face when going into hospice as if the disease is not enough of a problem. My mom was forced into hospice because of her age and a sedative overdose. She was in a sedative overdose that she had not come out of for 2 weeks.

She also had a hospital skin fungal infection.The hospital that she went to was treating it with about 4 different kinds of fungal meds no antibiotic cause antibiotic is deadly for this kind of infection. It will make it spread.The doctor said she was on the road to recovery even though she was still in a coma from the sedative overdose. She needed to continue the treatment. but she went to another hospital to see her original doctor and they decided to treat her to antibiotics which they knew would kill her especially since she was so weakened from so many sedative overdoses.They sent her to hospice and put the antibiotics in the vein in her neck to make sure she would still get her deadly dose for her condition.These kinds of treatments of sedative overdoses and all the other horrible treatments just need to stop. I found out later that the doctors did not want to bother to continue to treat her because of her age even though it was helping her so much.

Then I found out that on her death certificate that several end stages disease were listed that she never had cause an investigation was done you can ask for an investigation also for your dad.


Maybe we can get an online support group going with other people who have been through the same things as we have and figure out ways to change the laws.

If it was sepsis there are plenty of elders who survive sepsis if it is treated right and they have a good doctor.

Smudge well said

Thank you flowgo! I think that everyone wants what is best but care from providers don't always mean they are right. This is one of the biggest problems for elderly because not always are they heard.

my mother died 5 days ago. Her last words were " what's happening to me" she was talking and staying awake and 7 days later she died. they didn't give her anything to eat or drink during that time. once hospice took her she never opened her eyes or said another word. she was on both medications. she didn't like to be drugged up and in the beginning of her hospice stay she would tell them no and they gave it anyways. so yes I feel like that rushed my mothers death. she was taken care of poorly too at the hospital . very disappointed and disgusted. heartbroken.

I'm so sorry for your loss dena. Words seem inadequate at such a time...I will say a prayer for you and hope you can find peace....so very sorry... ((hugs))

There seems to be such a wide ranging scenario in how hospices work...for me, having gone through one that I was not crazy about due to some isses of just ignoring Mama's pain ( I promptly changed providers..it wasn't hard to do either) but our current hospice is a Godsend. We are NEVER made to do anything...They went over Mama's situation, totally bedfast, dementia/alzheimers, nothing but ensure whatsoever, but they provider the comfort care pack, they even provided a hoist to help me lift her to move her to a geri chair to help relieve pressure and give her some variety...our hospice could not be any better....so I am so saddened to hear that so many of you are in situations where you are forced to give meds you feel arent' needed right now, forced to do anything that goes against your loved ones wishes...that just seems so confusing to me....I sure am thankful for our team of folks....

I think it depends on the hospice. My experience with my dad was not acceptable, as explained earlier, and they kept the info. that he was getting morphine every hour and also Ativan for the entire day, until the evening when they wanted me to sign a DNR or take him to the hospital and act aggressively ( they really amplified what the hospital would do to him) or just keep him comfortable at the facility! What a bunch of cra.... They are the ones that caused him to be in that condition/situation. This whole thing could have been handled MUCH better with the end being much more acceptable to deal with. My dad is gone nonetheless. He tried to talk to his great granddaughter just a couple of hours before he died, but all he got out when he opened his eyes was "baby" before the drugs took him under again.

denawesley I am so sorry I told some others on here that people who have been through similar situations like you me and others on here and other sites should start an online support group and we can also talk about laws that need to be put in place and laws that need to be enforced.