I had a mixed experience with hospice for my father. He was 89 and had sepsis, endocarditis due to MRSA. He got sick in Rehab for 6 weeks(was recovering from hip surgery - was going to be released in 2 weeks since he was walking again with assistance) and had a urinary catheter that became infected. When he was brought to hospital from Rehab, we were told he was "touch and go" and that he was not a heart surgical candidate. He stopped eating and drinking- i think due to his illness ie who is hungry with sepsis, etc? He was constantly crying and in emotional and physical pain - hated being trapped in his bed - he was a very active senior(thats why he fell ). His vitals were ok but he developed tachyrdia from the heart infection. Heart dr said his only chance would be 8 weeks of IV antibiotics via a PICC line, Feeding Tube, urinary catheter and they would have to send him back to rehab for this. He was in a horrible mental state and i knew he would just lay in rehab with all these tubes and suffer - they are understaffed. He also had a stage 3 bedsore which i know would have gotten worse. So I said can we do hospice instead. I couldnt bear putting a feeding tube/picc line etc into my father .....they agreed that hospice would be a good option....they did inpatient hospice at hospital - and started him on IV hourly morphine and then ativan / haldol...he never woke up when meds started and died in 3 days. It felt like euthanasis. 2 yrs later, im still tormented by this. Did I avoid him endless suffering OR did i cut his life short?
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Hospice isn’t just for people that are passing within 6 months. Hospice can be started, stopped or keep going indefinitely as long as the patient re-qualifies with a terminal outcome. This includes dementia which my mother has. Hospice only comes out the bare minimum to keep it in place. That’s just 2 hrs every 2 weeks. That way if she falls or needs extra care, she doesn’t have to go to a hospital & get exposed to germs. She can stay in the comfort of our home & receive care. It also means if things take a turn, we have everything in place such as oxygen, morphine etc & access to any medical supplies. Also under hospice, Medicare takes over & pays for meds, incontinence supplies, 80% of her foot doctor appointments & more. It has saved her money & given family peace of mind. It also gives me free time when they’re in our home to go out & get other things done. It’s been a blessing in our lives & it will be in place for however many years she has remaining.
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My experience was that it's all about the money, it's a business, after all, and you sign over Medicare or payment authorizations first. Hospice was more interested in the money than anything else. Once they take over, the nurses and doctors won't have anything to do with your loved one even in the hospital or nursing home. Hospice determines everything, and they are rarely there. They have no qualms about stopping food, etc. and keeping them drugged up, even when not necessary. It's just every day business to them. They take over and make decisions without consulting the family, even if there are Health Care Surrogate and POAs in place. They basically will do what the loved ones cannot bring themselves to do, and assume we are all like that. That's why some people praise them. It's a license to hasten death. I will never use Hospice again.
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We did not have a good experience with hospice for my Dad. When we were advised by his dr that we should call in hospice the nurse who evaluated him said he wasn’t "qualified" yet. I guess he wasn’t sick enough? Then a social worker for his insurance did another check a few weeks later and said "why isn’t he on hospice?" Really?

Mom was alone with him when he died, I was on a business trip hours away. She called me in tears and said she had called the Hospice number and was told it would be several hours before someone could come. When they did the first thing the nurse/aid did was confiscate all the meds. They then called the funeral home and left.

I am hoping that this experience was a one off and that other companies are more compassionate. My BIL is a Chaplin for a hospice company in another city. From what he says hospice is a For Profit business which I find disheartening.
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I believe hospice started out for cancer patients receiving a terminal diagnosis and I think it is still appropriate for situations like that in which you can predict the next few months. In situations where you are caught by surprise - stroke, for example - and no one seems to recognize that your incapacitated loved one is dying, there isn't time enough to create/utilize a hospice plan. They tend to lead with drugs and being drugged might not be the way you or your loved one wants to die.

It did not occur to me that I could have had my father transferred to a hospice facility when the rehab facility kicked him out because of Medicare. Why didn't they suggest that? I was told I couldn't return him to his Memory Care because they didn't have a lift, but I think from this article, I could have returned him there under hospice care. Why didn't anyone suggest that?

We have used hospice twice and both times, we engaged them too late to be of use. Why didn't social workers at the hospital and rehab facility suggest them earlier to us? And when we did engage hospice, the rehab facility dropped caring for him entirely even though hospice wasn't coming in until the next day. There is a crack there between transitions. The rehab facility on it's own stopped giving him food and water. It wasn't that he refused it; they just didn't give him the opportunity. They put him to bed, turned off the lights, turned on the TV and left the room. He had vascular dementia.
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Beautiful article on hospice. I was extremely grateful to have this assistance during my mom's last days. It was truly a blessing.
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As someone who has worked in hospice (now retired) but still works as a long term care (volunteer) ombudsman I found this article a good reflection on hospice. After retiring I wrote a book on end of life because I didn't want the knowledge I had gleaned over the years to be lost if it could be of help to people in the end of life voyage. I have several observations though and they are primarily on the expectations of hospice. Hospice staff in the in home setting are there under standard hospice to provide care. They are not there full time and patients often need help in their ADLs which has to come from those who are living in the house or who are contracted to be there to provide that level of support. Also, the hospices that I worked for (4 in total) all had out-of-hours on-call nurses. These were always RNs and could come anytime after prime hours, and they did. For those who had hospice care in a facility, there is a fine line that needs be observed to prevent duplication of services under Medicare regulations. Sometimes these can be interpreted incorrectly by families and in such cases should be discussed by the appropriate social workers in either the facility or hospice. The other notion that I particularly loved in this article was encouraging the patient to discuss and write down their life experiences, decisions and loves. If you google 'ethical wills' there is much written about this that is valuable and I encourage all who are interested in this thread to do so and read on this. This is the preservation of a person's life legacy and yes, it can be enlightening for a eulogy.
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I have wittnessed only a very very few deaths. Allof those were deathsof born again believers in Jesus Christ. All of them were peaceful. Some passed away semiconscious from pain killers with a sweet smile and saying nothing. Some stared into space, raised their hands, and laughed happily. Some just seemed to smilingly fall asleep.All displayed the "death rattle" but not in a difficult or painful way.I have heard several accounts from unbelievers of loved ones dying screaming and struggling in spite of being given pain killers.It is possible that some cancers cause terrible painful death even with pain killers.i never ever saw anyone die of cancer.The onesI wittnessed all died of heart failure at a very old age.In any case, hospice seems a very good idea.Do hospices permit a pastor to pray with and or counsel dying people and their loved ones. I am assuming so and I hope so.
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Thank you. You kind and informative real life experiece is so clearly expressed and easily understood. I think I can do it.
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Wonderful advice. The author writes with obvious love and caring for people. I particular liked the idea of jotting down notes about some of the events and words in "good" moments. They may be few, but they are priceless. I had started to do that, but in a haphazard manner. Today, I'll get a diary to record those moments that uplifted me when they happened. I'm sure they will give me that same uplifting effect for the rest of my life. What a treasure!
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I believe it should be added that not every dying person is necessarily in pain. If the person is very old and is simply "shutting down" it's less likely that s/he is in pain. My father's life basically ended this way.
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My experience with the two weeks my husband was in a freestanding hospice facility was extremely positive. The hospice nurses and aides helped me to understand the various stages of the dying process and to not feel guilty for not having a gastric feeding tube inserted after his stroke. His two grown children, one of whom is married to a rehab nurse, were not very supportive and don't have anything more to do with me, but I know that my husband was in no pain and went peacefully. I only hope my own children will do exactly for me what I did for my husband.
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I was disappointed with my experience with Hospice when my mother was in a Nursing Home. They said they would be there when we needed them but they couldn't find anyone to come sit with her and I had to keep calling them back to see if they could get someone to come. When she finally did come, she was very agitated because of the traffic situation and told us to wait 15 minutes so that she could evaluate Mom. We waited much longer than that and when she didn't come and get us, we walked back to the room and the sitter was sitting there eating. She kept telling us not to bother Mom and to come in one at a time. Mom ended up dying with us outside the door while the sitter just sat there. I was very disappointed.
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Thank you. You kind and informative real life experiece is so clearly expressed and easily understood. I think I can do it.
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So sorry you went thru this. The twohome hospice here I've never heard anything negative. They r not in ur home 24 hours a day. RNs only show up maybe 3x out of five. Aides come everyday but really not there to do everything so its the caregivers responsibility. But, u can call the nurse at anytime. You can ask for a different nurse if she isn't the right fit. My Aunt went to a hospice facility. I hear it was really nice. The room was like a bedroom at home. Now my GF chose the hospital hospice. When I entered the room it looked like a hospital room they tried to fix up. Don't feel guilty. We try to do what we think is right at the time then looking back we think there was something we could have done different. We tend to trust the professionals thinking they should know.From our experiences we can help someone else.
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I do not wish to turn anyone away from Hospice. But, with my experience, I am living with guilt. Don't just accept the nurse they choose. Interview the nurse. Ask them if you call at 2 am. is there someone that will come immediately or within a reasonable time? My experience with hospice is horrible and I would not ever recommend it to anyone. I live with guilt. I was the 24/7 care giver of my love. I was the one who gave the drugs. I was the one who did everything. When I called for help to straighten out his bed as he was to heavy for me to move, they could not come. There was only two days a week when the caregiver came and I had to wait. I called one night and he needed help as he was so agitated. The nurse on duty could not come.. He told me me what to do. When I think back, I wonder just how much faith I had in these people. Especially with the nurse who at 2 am, told me what to give him. It was horrible. They were upset because I could not move a 200 lb man with absolutely no fat on his body. There was no way. I had bruises on my wrists from pulling the sheets up to get his body up in the bed. That was the only way I could do it. Therefore, the sheets at the bottom never were there. His catheter came out when he was able (while I was asleep) came out. Can you imagine how that hurt? It mean that his urine was not going into the bag. I watched that bad carefully. He was struggling. Then to have a nurse give me instructions over the phone? the night he died,the nurse sounded like she was so put out that she had to be here. She ran around the kitchen like a chicken with its head cut off pouring the drugs into a bottle with some chemicals to destroy the drugs. Instead of understanding why I was so distraught, she wanted to get home to her dog. My advice, interview the nurse they select, ask all of the questions,,,,,Who will come when I call and how long will it take for them to respond, what will happen at the end. The nurse was in and out of my house in 30 minutes after he died and I felt horrible. Since then, I was promised therapy...I am now in my third month....the therapist missed her first appt and now has been in Italy for two weeks. I left a message a week ago knowing she was back and no return call yet. Want to talk nightmare. MAKE sure you do it right. I would never refer my friends to hospice ever. I am sorry if this is not what everyone wants to hear,but this is what happened. I am living with this guilt. Be careful. Be wise and interview and ask questions. I had never done this before and I wish someone had told me to be more careful. Now I have to live with this forever.
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You could have questioned the morphine and requesting he only get it when he felt he needed it. He had rights in his care.
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I was extremely upset when I realized my husband was being given morphine every two hours even tho he didn't ask for it . This, of course gave us no opportunities to share with each other, for the morphine sedated him beyond reality, beyond any ability to stay connected with the real world .......an awful way to spend your last days, unable to communicate...... and how awful for me who wanted to communicate with him those last days. Why was morphine given every two hours? Why not give the patient the right and the courtesy to ASK for pain control when he needed it, not when the doctor 'thinks' he needs it ? My dear husband slipped out into eternity, overdosed with morphine! I would call this 'mercy killing'. or to be gut honest I call it 'murder'. I feel cheated of being unable to have had some interaction with my husband of 52 years during his last days.
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My best friend past away three years ago at the age of 40. Hospice was extraordinary. I am now volunteering at a local hospice.
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Thank you for sharing your thoughts; it's helped me understand what Hospice care is about. My dad just went on Hospice care. There was hardly any transition; it happened so suddenly, I'm in shock. Literally two months ago everything was "normal." Then a series of health issues came about, and rather than be in and out of the hospital he chose Hospice care at hhome. He has a live-in caregiver who he's comfortable with. My dad and I have always had a wonderful relationship until now. He's put away his cell-phone, and the caregiver tells me that he doesn't want to talk to me when I call her number. The Hospice facility will not give me any information about his care-plan, no updates, nothing because his daughter from a previous marriage is the DPOA. At this point, I'm saddened and confused. Since I disagreed with her about some issues during his recent stay in the hospital, she has stopped talking to me. The caregiver gets irritated with me because I call often to see how he is, and see if I can talk to him. He doesn't want visitors. Because of all of this, I decided to write him a letter telling him how much I love him, and that I'm here, but that I respect his wishes. I don't know if this is the right approach, and I hope he reads the letter. Is there another way to work through this?
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Thanks for the insight. I've begun hospice volunteering recently and it can be a very rewarding experience. Most anyone could do it, you just have to be able to read people's feelings a little bit and respond accordingly. They want to talk, sit and listen to their stories with maybe a little prompting. The patient is quiet, just sit and be with them. The patient wants to be alone, leave and come back another day. I truly hope I have some companionship in my final days.
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I loved this article. Modern medicine has extended our lives, which is great until the person cannot enjoy it any longer. My Mom is 87 and yes I'll miss her when she is no longer here. But she has Dementia and cannot enjoy doing things she used to. Reading was her main enjoyment but her mind doesn't always distinquish the words. I think she rereads pages till she understands, I think. She doesn't enjoy converstions because she can't process what is being said fast enough. She is confused, emotional and freightened. Is this the way she wants to live. No, she says she is ready. I pray its before she forgets who her children are.
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I think it is a great idea. I know that eating could possibly be very uncomfortable for a person who has no appetite. We live thinking we MUST eat and eat everything on our plate. We are not hungry but we eat. Think in terms of small portions of those things they liked the most to eat. My partner loves Sardines. Last night his meal was Sardines and crackers. He loved it and it filled him up. He hates baths and showers now as it is hard work for him. So, I personally wash his body. He loves it and it is soothing and I am touching him which makes him feel very good. Lotions spread over his body makes him feel good, where getting in and out of the tub is a chore. His favorite shows....he may fall asleep watching them, but they are what he wants in the background noise. It is difficult to get him into the car, but he loves to ride along as I do the errands. (make sure it is not too warm to leave him in the car). There are little things we can do to comfort them. Read the letters that comes in the mail. Read the brochures he got that he is interested in, but can no longer read. Do a photo album of all his favorite people. Keep it handy so he can look through it when he wishes. Make sure certain people "CALL" him not email him as often as possible. Don't be afraid to turn away someone you know will upset him. These are small things, but they keep him happy. Read the Bible to him....that is his favorite. He never read the bible through his entire life. I realize it is a bit late, but take some chapter and read it through. Use a bible without the thou's and words that make it hard to hear and understand. I keep the area around my Partner clean and organized. There is nothing like order to make you feel comfortable. Clean sheets and warm blankets when they need them. Just a few things I found helpful
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This is an extremely thoughtful and loving article. We all need to learn this lesson and allow ourselves to accept the final ending of a loved one's life with dignity for both the person dying and the caregiver.
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Thank you for posting. This is a wonderful and important read! Thank you.
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