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If I had an ailing family member, I would do everything in my power to keep them out of hospice. Retaining their team of original specialist doctors. Getting them home nursing care, OR a good nursing home. A huge percentage of people become hospice patients, simply because they have tremendous pain from cancer, or bone pain/joint pain, or pain as a result of having to have dialysis weekly, and regular MD's are extremely reluctant to prescribe the proper high dosage of narcotics to alleviate their pain., whereas hospice doctors are much more liberal on the dosages of narcotics that they prescribe. I once had a middle aged man who had admitted himself into hospice (thereby discontinueing dialysys, and therby ensuring he would die within about 2 weeks), just because he couldn't take the pain anymore. He couldn't find a doctor wiling to prescribe a high enough dosage of pain meds in order to alleviate his pain. So, in order for him to be out of pain, he made the decision to go into hospice. There's something really wrong with that.
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My Dad just passed on and his last week was with hospice care at their facility. Hospice care has changed a lot since the days when one had to have cancer, or intractable pain or imminently ready to pass on. Now, patients can be on hospice, get tuned up, and start doing better, go off hospice and then, when/if they go downhill again, go back on hospice care. My Dad's story.... he had dementia and was in memory care. He fell and broke his hip socket. Not a place where surgery can fix, and besides he was 93. So hospital care and hopefully was to go to rehab for a few weeks and back to his facility with physical therapy. Well, he went downhill, due to the pain from the fracture, his dementia got a lot worse, from being in hospital (strange place) and because of needing pain meds. Finally, after a week, and no way to start any physical therapy, doctor said rehab was not going to be, and he was so out of it, they brought up hospice. Dad was starting to be too doped up to eat, or too agitated if not doped up, to eat. Hospice staff explained very clearly that they would medicate with pain meds and anti anxiety meds, but that before each dose was due, they would try to get him to drink. IF he showed a good swallowing ability, they would work towards eating and drinking and give less and less meds...try to come up with a 'recipe' that would keep him pain free, but awake. IF that worked, they would transfer him back to the memory care unit with hospice follow up if he continued to improve. My Dad refused to drink, showed no interest in swallowing at all, and if not getting the pain med, was moaning and crying out every time they had to turn him....so YES...he was getting regular morphine and Ativan, as another writer reported was used in her experience. After a little over a week, my Dad passed. There were times he had his eyes opened and connected with us family, and he was able to hear on the phone, when other family called him and talked, but he really never talked back to us and just slowly faded away. So, of course, the drugs 'helped' make that happen, however, our hospice staff were very careful to be assessing for pain and the actual NEED for the drugs...and my Dad did need the drugs. We clearly knew that if he was not going to drink, or eat, but especially not drink, that he was going to die in a short time....but the decision had to do with HIS abilities...not the desires of the staff. Hospice also provides a year of grief counseling and follow up for the family left behind and we are now getting that set up for my mom. It was offered to myself and my daughter, even though I am a retired RN and she has a master's degree in counseling and we both live out of town....so they really are quite wonderful in my opinion!
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Cantforget, I'm curious. When you 98 years old very sick, mentally incompetent, wearing diapers, no quality of life, how do you want to be treated. Do you have a living will that specifies any and all measures are to be taken? No morphine?

You mentioned the poor guy who wanted to end the pain so he enrolled in hospice. You then stated, "There's something really wrong with that". Please explain to me what is wrong with that.

You said you were a hospice RN. More than once, I believe. How long did you work in hospice? Did you quit because you though it was a terrible thing?
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