Did Hospice rush your loved ones death?

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.

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.

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.

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!!!

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.

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.

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.

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!

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.

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.

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.

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.

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.

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 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!

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.

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.

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.

Sendme2help are you referring to me about not posting? I just joined. I wrote my experience and it is good. The staff is very kind to me. If I'm not welcomed to post I'll not come back. Sorry if I offended anyone.

Please allow this thread to die a natural easy death by not posting here. If you have a new thread to start, do that. But someone unhealthy has joined, and it just would not serve any one here to entertain delusions. In my opinion. If possible, I am reporting it to administration for review.

Daddy's girl, that is terrible. I still have my voice, but my daughter is my advocate. She isn't afraid to ask the questions. Sounds like they wanted your dad out of that bed to get a new patient. I am treated well by Homestead Hospice. All my meds are free, I don't pay anything. I'm not dying yet but I know I could go any time I go through a bad spell.

I am on hospice since May. I've had two episodes where I became unresponsive. I have chronic back pain, COPD, stage III and CHF. I have a diagnosis of cor pulmonale, but I think that's CHF.

My pain is not controlled with Percocet. My case worker is going to talk to the doc about putting me on methadone for chronic pain and keep the Percocet for breakthrough pain.

I don't feel they are trying to evict me from my body to get me off the program. Medicare pays for six months and then after that hospice has to eat the expenses. However they have some clients that have been on hospice for years.

Daddysgirl I hope you get that hospice doctor's balls presented to you on a plate. Did he also prescribe the dilaudid without seeing your father? Demand to see their working when it came to writing the px - I'd love to hear what the rationale was.

My 62 year old dad was placed on hospice care at home 3 weeks ago. He is defiantly not at the end yet, but yes it is inevitable. Last Friday I recieved a call while at work, the hospice nurse told me I needed to come NOW and that she didn't think my dad would make it thru the weekend. I left immediately and drove the hour and a half to be by his side. I was very confused, he was doing quite well and had even gotten out for a car ride that Monday. I quickly assets my father when I walked into the room. His lips were a shade of light blue, his ostomy bag had only about a tablespoon in it and was very dark, his breathing was shallow. I began with the questions! When did this start, did they change his meds, has he eaten, has he been drinking? I was told that on Monday the hospice nurse has added a new medicine, dilaudid that was to be giving every two hours for pain and to help with breathing. I tried to wake my father, he didn't know who I was and was hallucinating and become agitated. He was very scared and kept asking me what was going on in between his out of reality spells. My step mother told me they changed his meds Monday and by Wednesday he wasn't acting right. I immediately called the hospice nurse wanting answers. I told her that I wanted him off the dilaudid, because I never hear my father complain of pain and he was already on 10 mg of methadone three times a day. If I felt my father was in pain I would whole heartedly give him more pain medicine, this wasn't the case. She said she would call the hospice dr (who has never seen my father) and call us back. She called back 30 minutes later and said the dr didn't want to change his pain meds but instead wanted to add an antipsychotic call haldol, to help with the hallucinations. Whelp, that didn't happen I stopped the dilaudid myself, sat up with him for two days straight while he went thru hell getting the medicine out of his body. The twitching stopped, the hallucinations stopped, he started eating and drinking, he started urinating again and it started turning lighter. He was up playing checkers with me Sunday night. I saved my dads life! So Monday come and the hospice nurse comes, she was in total disbelieve and told my dad that she was sure he wouldn't make it thru the weekend. I looked her straight in the eyes and told her, "he would have been dead if he was still taking dilaudid." She was obviously very irritated with me for taking him off the medicine and kept making rude comments. I left Monday to go home and back to work and told him not to let anyone change his meds and took a picture of what he should be taking each time. I called everyday to check on him and make sure all was well. Thursday when I called he didn't answer, which is extremely odd. I took off work and drove back to his house, only to find my dad back on the meds and heavily sedated from no other than dilaudid!. He is now with me, so that I can monitor his mediation. I have filed a report with adult services. Please please be the voice, when your Loved one doesn't have one.

Then there is the deadly sedatives, like haldol/ativancoctails and other dangerous ones. They can be used in injection form or put in iv form which iv form is not approved, but done anyway especially for elders. Haldol and ativan alone is more likely to kill an elder. It is on the black box warnings.yet still used.It is even used when an elder has a severe sensitivity to it.

These sedatives alone cause death and the person does not even have to have any disease.You may not need hospice at times cause sometimes the hospital will be glad to start these deadly sedatives, then hospice can finish it.So very wrong when that happens.

People have to be very careful who they chose for their medical care(hospitals), especially when it comes to elders.It does not just happen on tv it happens in real life also. That is what I found out.

Singingway, all medications have side effects some more serious than others. Medicine is not an exact science and knowledge and treatments are constantly evolving. Looking back on over 50 years as a nurse I am constantly horrified by the way things were done that long ago. One very good example is childbirth which most women here can relate to. No one had heard of giving epidurals to ease the pain of childbirth.
Chemotherapy saves millions of lives every year but the side effects are horrendous and sometimes life threatening in themselves. Medical professionals are dedicated to saving lives not taking them but at times the only available treatment may be worse than the disease but patients cling to the hope that this last thing may just prolong life. Think of the distress of someone with end stage kidney disease dragging themselves to dialysis week after week. They will die in the end and the way they die will be little different from the way they would have died 50 years ago when dialysis was not widely available. Organ transplants are another modern developement but rarely are they such a perfect match that anti rejections drugs can be avoided. For most people it is worth the risk because their lives can be extended. During WW11 airmen shot down into the ocean with their flaming planes did not suffer as badly from their burns as other burn victims. It was assumed that it was the salt water that was so healing. Treatment for burns became to immerse the patient in a salt water bath which was probably very painful. These days better treatments have evolved but the lesson learned was to exclude air from the burnt skin. currently in the news again is the bombing of the Boston marathon. In recent years the use of tourniqets to stop severe bleeding had fallen out of favor in preferrance of special wound dressings and application of direct pressure. Some of the caualties whoose limbs were blown off would not have survived more than a few minutes if people in the crowd had not had the presence of mind to remove their belts and tie them around those severed limbs.
Of course there are evil people from all walks of life who do things for evil reasons as we see on TV every day but the majority of medical professionals are devoted to relieving suffering in whatever way they know how.

dcguydc -- the other thing they don't tell you is that the hospice medications themselves cause side effects -- like nausea.

My two experiences with Hospice with my father 15 years ago and with my mother this year, were so awful, that I have rewritten my own Advanced Directive to keep myself OUT of the hands of Hospice, EVER. Their protocol for death is analogous to the 1950's protocol of medicalized childbirth. Someday there will be a change in our understanding, just as there was with childbirth, which will open the door to the extremely effective alternative and holistic protocols which provide a more positive and pain free transitioning to the life of spirit. I'm writing a book about it.

I had no direct experience with hospice, but I had heard only good things about it from friends and coworkers, who shared their experiences. My Mom had been treated for cancer but it had come back. As the news came that treatment options would be limited, we were trying to deal with that and take it a day at a time. Then a stroke, which she survived, completely robbed my Mom of who she was, what she knew, who she knew, what she could do, It was devastating on every level, and the doctors recommended hospice. Even when you know it's coming, it's hard to hear, yet even with my family's limited knowledge of hospice, it certainly seemed to make sense. Mom was in a nursing home at this point, but if there could be more folks to help give my Mom the medical care she needed and deserved, bring 'em on. The nursing home staff were wonderful and since one of us (Mom's kids) was with her all the time, the nurses and aides were like family to us. Hospice started and a nurse was coming by to visit everyday for about 15 minutes. They were friendly and chatty, but did nothing to help my mother, who was sick to her stomach everyday she was there - 5 months. If I had a nickel for every time I heard a hospice nurse say, "It's the progression of the disease, I'd still be counting nickels. Their "care and comfort" mantra was, in our case, the biggest crock of bs. I wanted to fire them, but the reason to keep them was, "Well, at least its another medical person checking in on her, " which was almost true - it was another medical person doing her least to get a check. And yes, it certainly seems that the ativan and morphine cocktail, once they started that, the hospice nurse was then simply coming by to see if my Mom was still alive. We never expected miracles from Hospice, the only thing we expected and were promised, was that pain and suffering be as minimal as possible, "care and comfort,." Mother's pain and suffering were never really under control and she was sick every day for five months, every single day. Based on the experience we have just gone through with hospice, it is, by far, the worst, most regrettable decision I've ever been involved in making. Hospice failed miserably.

Hugs to you DarLove, I still miss my dad a lot these years later. It's still so fresh for you. I don't envy where you're at right now. It is unbelievably painful, especially the first year. Just allow yourself to be and to cry whenever you feel like it. It will get easier some day in the future though I'm sure it doesn't feel that way now. The world will always be different, that's for sure. There will always be an empty spot.