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Hospice Experience


heyjudefl1

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I debated for many days whether to write about my hospice experience. I did not want to influence anyone else who is facing the decision on hospice care. My husband Ray was diagnosed with NSCLC July 05. It was a year of hell for both of us. We had no life except cancer. When the cancer metastasized to the brain in Dec. 05 the medical profession really wrote him off. We still plodded along with treatments which were usually interrupted by medical problems and he never really completed any course of treatment. Hospice was mentioned so many times but we did not want to give up. To me Hospice was accepting death. Things got continually worse (the brain tumors were treated with radiation and Gamma knife, neurosurgeon said that the brain tumors would not be a problem)until about 2 months ago when he retained fluid in his feet and was having trouble breathing. Finally after no relief the oncologist said on the last visit, June 27 that we had 3 choices, Hospital, In Home Hospice or Hospice in a facility which happened to be in a regular hospital. It was presented to us that there would be all kinds of help both physically and emotional. After many sleepness nights and 24/7 care we decided to speak with Hospice. I really was desperate for some help. The representative came that night 6/27 and she explained what they would do. Half way through the conversation she said that it would be good for him to go into the hospice facility for a couple days so that we could get ourselves together and then he would come back home. We agreed. By this time it was 8p and she said that the earliest they could send a medical transport was midnight. I refused and the response was, "Well if you are going against my advice you will have to deal with this tomorrow." I told her I would not deal with it tomorrow and that if they did not come the next day to forget about it. They did take him the next day. The care was not very good and their philosophy was to die with dignity which in essence meant being drugged. No Pain. No Nothing. They (doctors/nurses) kept asking me if I realized why he was there as if I was mentally deficient (maybe I was). I had to continually fight the system (their system). I always knew I still was in charge and he was in the hospital and had access to emergency help. I and my daughter stayed with him 24 hrs a day and did all of his care. Sunday, July 2 about 6p he started having extreme breathing problems. The nurse said that he was going into pulminary failure and I could either let him go peacefully (morphine) or I could elect to take him to emergency but that I had one minute to decide. I begged him to tell me what to do. He just kept saying, Judy I can't breathe. I could not do this to him and I said I wanted to get him help. Obviously, against their advice. The nurse actually left him there gasping while she went to get the form for me to sign to release him from Hospice. They did try to help him in emergency but again I had to fight for him. He died right after midnight on July 3. I am inconsolable and while I do have doubts at times I think I made the right decision. I would do it again. I have never heard one word from Hospice. I guess because I did not play the game their way. My experience is not what I had always heard about Hospice. Sometimes I think it may have been my attitude but they are supposed to be the professionals and deal with emotions that cannot be compared to anything else in life. I think if anyone makes the decision to enter Hospice you still have to maintain control over the treatment and your life. It is not an irreversible decision and you can't just accept everything blindly. I hope our experience was unusual and that most others find comfort and help. My grieving goes on and gets worse every day. My life will never be the same and I only hope that sometime in the future I will feel whole again. Judy

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Dear Judy,

I am very sorry to hear you had such a terrible experince with that hospice facility. I do know not all hospice facilities are run that way. Like anything there is good and bad in everything. I'm very sorry to hear yours was bad. :(

I'm also sorry to hear you lost your wonderful husband. When we lose a loved one, we always tend to question if we did the right things or not during there ending days. This is all the normal feelings of grief.

My condolences to you and your family.

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All hospices are not created equal. I am glad you posted this because it is important that people get references and check out all hospices in their area before choosing one. You need to know which hospice is best before you actually need it.

There are several hospices in my area that are affiliated with the hospitals so that patients are not given the choice of other community hospices (which is illegal), just directly referred into the hospital's program (which is not as good as the non-profit in town). The hospital's residential facility is in a wing of the hospital while the non-profit has a gorgeous place in a wooded area with family rooms etc. Most people just let their doctor make the referral and that is a mistake. I am sorry you had a bad experience- that should not have happened.

Rochelle

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Judy, I am so very sorry to hear about the loss of your husband. I am also sorry hear that you are disappointed with your experience with Hospice. My husband had in-home Hospice for two weeks prior to his death. I can relate to many of the points you made in your post. Although Hospice cares for the family, their main concern is keeping the patient peaceful, comfortable and as pain free as possible. In my husband's case, all three were accomplished. I'm sure that Hospice felt your husband could recieve better care in a facility until they had all the necessary medication and equipment to care for him in-home. It is often hard for us to accept the fact that Hospice strives to make the patient comfortable and that this is not a group that uses life saving heroic measures to prolong life. When Hospice first came into my life, I was set on the fact that I would call 911 if Dennis ran into difficulty. The Hospice nurse calmly replied..."then maybe you aren't ready for Hospice." I know how very badly you would have loved to have more quality time with your husband, when he was responsive and not drugged. I am so sorry that you are having such a difficult time right now. I know the pain you are feeling. Please don't second guess any decisions you made regarding your husband's care. I am sure you did everything in your power to save him. Anger is a big part of grief. It's alright to be angry. You have lost a very important part of your life and are heartbroken. Please let me know if you would like to talk. I am a good listener and talking to someone that understands does help.

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I am so very sorry Judy. My husband Dave was in such a bad way with his breathing too. It is so hard to watch and not be able to relieve their panic and pain.

I won't go into what happened with my husband because I have written of it before and it is so hard to think over all those awful details, however, suffice to say,I know your pain and my heart goes out to you. Will be thinking of you.

Paddy

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I am also glad you posted. It *IS* important to know that not all hospice facilities and programs are created equally. I think we hear repeated so often, "Hospice people are angels!" "Hospice is so helpful," and on and on that we think that is how it will automatically be... and it's not.

My Mom's experience with hospice was fairly positive, but I have said here before that it wasn't the "angelic" help that I had always heard it would be.

Thank you for being honest.

I'm so sorry that you are hurting so much. We care, and we're here. Keep talking.

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My hospice experience left much to be desired. Earl was kept at home for which I am most grateful that we could do that. However, our hospice was less than dependable. I guess the episode that sort of describes the whole experience is the morning that Earl died the durable medical equipment co. was coming to pick up the hospital bed etc. I called hospice to see if they could give me an approximate time since we needed to go to the funeral home that day. The support person at hospice said, oh right, he died, you can call them and schedule it yourself now.

What I know now, is that I could have shopped hospices, talking to others and finding one that had an excellent reputation. Not knowing I went with the one associated with Fox Chase and they were too small and too understaffed.

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Our hospice experience at the end of Dad's life was not what we had thought it would be like. Mom and I had thought that she would have stayed with us for Dad's final hours. Instead she had to run off to another client. She seemed in a hurry and very nervous. She was constantly either on her cell phone or her computer. When she left she left me with a bunch of drugs to give my Dad. Told me to give him morphine every two hours regardless if he needed it or not. I felt very uncomfortable giving him the morphine that often. I didn't want to drug Dad to death. I only gave it to him when he seemed to need it for pain or discomfort. As I look back now it would have been so comforting to have a nurse there to give the meds. I would have had more time with Dad and would not have been so worried about keeping track of times and meds we had given him. I guess no matter how it happens death of a love one is so heart breaking nothing would ever seem right.

So sorry for your loss. I pray the Lord will give you strength on the days ahead. Keep coming her for support.

God Bless,

Denise

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One of these days I'll get around to posting about my most recent hospice experience with my mom -- it was another mixed bag and only lasted about 3 weeks. I'll say this much now, however: in my opinion, caregivers still must advocate for the patient as much as they did "in treatment" when signed on to hospice (at least that's my experience twice now with two different hospice organizations).

I wouldn't exactly describe it as "angels from heaven" that just magically remove the burdens in my case(s). They were wonderful folks, don't get me wrong, but there's still a lot of work to be done by the caregiver to ensure that the patient really does get dignified/respectful care. As the caregiver, you're still the one that knows your loved one the best and you are the one best tuned in to the nuances of whether things are really working for your loved one or not -- hospice is just another organization with multiple patients in their care that has "standard ways" of dealing with things with professionals that will operate off of assumption in brief scheduled visits with the family/patient; and their "standard ways" may not be what works best for your loved one and their individual situation.

The hospice philosophy is nice -- however, quality of life and comfort don't necessarily have to mean drug 'em up more and more and more. Nor does "natural" respect and dignity have to mean ignoring uncomfortable symptoms such as extremity swelling as a "natural part of the process." You still must take charge to see that the care given is sufficient for what you believe your needs are (your needs are what count, not theirs...they are there to support YOU, patient and family, not the other way around). I was surprised when our hospice RN hadn't even noticed my mom's extremity swelling -- mom had so much confusion, she didn't even register any discomfort from it to tell anyone about it, but it needed attention.

I never found the hospice staff(s) unwilling to work with me and signing on to hospice isn't supposed to mean "that's it, set 'em up to perish and how fast can we do it?" (sorry, that's being blunt, but I've heard that sort of attitude from folks in my parts and it's just not so....at least not in my experience) -- hospice philosophy is letting the body take it's natural course while supporting the patient and family in quality of life needs.

Had I ever found a hospice attitude smacking of disdain for not following their advice, I'd fire them on the spot -- it's your and the patient's right to do so.

Linda

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I personally had a "not so great" hospice experience with my mother in law... I was so greatful that Daddy passed at the hospital where he had spent so much time and where we knew the nurses and doctors so well. This is what I asked for with my mother in law, but we were told hospice would be such a great experience for the family, that we were really doing ourselves a disservice by not having her sent there. Needless to say, the put her in an ambulance and she nearly died from the trip... she never regained consciouness so had NO IDEA where she was and she died two days later. Hospice did not make us feel welcome at all. She was put in a room with 4 other patients who were all unconscious and we just kept our little curtain drawn and sat in hard chairs and stayed with her 24/7. They made no attempt to try to make us comfortable or see if we needed anything.... when she passed, no one gave us any "guidance" or comforting words... it was very cold. So, my experience was not a good one.... not at all.

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My family's experience w/ hospice w/ my dad was the following, initial visit, everything was given to them, what meds, when to give, who to call, when soc. worker coming in, the first few visits with the nurse and home health aide. In reality, what actually happened was once they knew my mom was a nurse and my brother his hc proxy, it was "here you go" showed them what to do, and pretty much I would say 90% of the care was by mom and brother, and other family members including myself and about 10% nursing care.

My father medically was an extremely difficult patient, due to the fact that he had not only a colostomy bag, but a illostomy(bladder)bag, as well. Both due to the fact of his deteriation were not fitting properly, would break or explode. He had gotten a staph infection from his month at the hospital, so all precautions had to be done, he had the morphine pump, which the dose needed to be changed due to the fact of increasing pain. Along w/ his fentynl patches, which were 150mg in each arm.

The nurse that would come in was very nice, she tried the best she could, now getting a homehealth aide was a problem, some would show, some wouldn't.

My dad lived for 7 weeks at home w/ hospice, his drs. thought he wouldn't live past a day or two.

The most difficult part was my dad didn't want to die, he fought so much, but the cancer was so bad that his tumors were spread throughout his entire back and you could see them buldging out, he was starting to bleed from his nose and mouth. There was only so much we could do.

On the last weekend before he died, his need for morphine was growing, he was going in and out, we knew he would need more before monday, my mom called the on-call nurse, she gave my mom a big hassle, saying my dad had enough. Then my brother, who is a doctor, got on the phone and put her in her place and w/in the hour we got the morphine, thank God.

That early Monday morning, my father was in total distress, congestive heart failure for four hours, my brother did all he could, my dad didn't go easy.

Later that morning the hospice nurse came, we cried, but she was relieved my dad was no longer in pain.

That's why don't mention hospice to me in regards to anything doing w/ my husband, I don't want to deal with anything like I did w/ my dad.

Grace

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The hospice philosophy is nice -- however, quality of life and comfort don't necessarily have to mean drug 'em up more and more and more.

I feel this is exactly what hospice did to my mom. Yes she was dying but I believe because they gave her so many drugs she died sooner. In the beginning they easily agreed that we would let them know when mom needed more meds for pain. Then over night they claimed she was in pain and started to give her more and more meds. Mom became like a zombie and couldn't stay awake. She couldn't stay awake long enough to eat or drink. The day before she was sitting up fine and eating and drinking, they upped the meds and it all changed. We had to fight to get them to stop giving her meds and only give them when we asked for them. I remember the day driving to hospice with tears in my eyes ready to tell them exactly what I thought and discuss with dad removing mom from hospice. When I got there my dad and sister had finally convinced them to stop the meds and only give on request. Unfortunately mom was so dehydrated by then that she never got better and died a few days later.

I know every hospice is different but I will be very cautious before I use hospice again.

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I have been reading all of your posts regaring such horrible hospice care. We received great care for my dad. We only had one bad experience and complained to the main hospice manager. We had great nurses and my dad liked most of the them. The one he didn't like we called and asked that she did not come again. Two of the nurses became so close to my dad they even came to the funeral. He didn't want morphine until the very end so they didn't give him any. They were very honest with us as to what to expect and one day I just spent 3 hours talking to the nurse. Hospice Care is what you want it to be. You can always request another facility or ask for different nurses. They even held my dad's body at my mom's house for 2 hours so that my brother and I could say our goodbyes before calling the funeral home. I had a great experience with the Hospice Facility we used. They are not all bad.

Robyn

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"robynmark"]I have been reading all of your posts regaring such horrible hospice care. We received great care for my dad. We only had one bad experience and complained to the main hospice manager. We had great nurses and my dad liked most of the them. The one he didn't like we called and asked that she did not come again. Two of the nurses became so close to my dad they even came to the funeral. He didn't want morphine until the very end so they didn't give him any. They were very honest with us as to what to expect and one day I just spent 3 hours talking to the nurse. Hospice Care is what you want it to be. You can always request another facility or ask for different nurses. They even held my dad's body at my mom's house for 2 hours so that my brother and I could say our goodbyes before calling the funeral home. I had a great experience with the Hospice Facility we used. They are not all bad.

Robyn

Of course you are right. There is another thread here which deals with more of the positives of Hospice care. I think the positive thing about this thread is that it allows us to see that not all hospices are created equally. I know in our case, we were more pleased than not, just not as bowled over by helpfulness as we were expected to believe we would be.

The important thing is to investigate options before you need them. We all hope that we never will, but if we're going to, you want to know with as much certainty as possible that it will be a positive experience.

I'm really glad that your Dad's experience was so positive! There are MANY positive experiences out there. It also sounds like he and your family did a good job of sticking your neck out when you weren't happy about some aspect or another. That is an important thing as well.

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