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Hospice was shocking.
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WELCOME TO THE HOSPICE COMMUNITY: This Patient-To-Patient Community is for discussions relating to Hospice Care. The goal of hospice care is to provide comfort, relieve physical, emotional and spiritual suffering, and to promote the dignity of terminally ill persons. Topics discussed in this community are: Bereavement Care, Coordination of Care, End of Life Care, Family Support, Home Care, Inpatient Care, Insurance Issues, Pain Control, Respite Care, Spiritual Care, Symptom Control, When to Call Hospice.

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Hospice was shocking.

My daughters fiancee;s brother had muscular dystrophy... after a bad experience which caused him to becoe possibly brain dead, it was decided that he woul dbe placed in hospice. he was 18.  the doctors told us that it would be  avery quick and painless death.  they never did a second check on his brain, they just threw him in hospice. it was a nightmare.  he lay there, for two weeks..no food... no water. slowly dying. it was horrible. I read that after a point, the body goes into a mode where the person no longer feels anything. I have no clue as to why lethal injection is not legal under certain circumstances. Its ok to put our pets down, in this way, and its ok to be tod that that is the human thing to do.. but how is it ok to let a person starve to death.. and be allowed no water? What a nightmare this was. Again, if the person is going to die.. isnt it better to allow a person to die quickly.. instead of the pain and heartache the long wait of starvation places on the family? as well as not knowing what a patient goes through. how do the doctors know anyway???? have they had hundreds of people come back from hospice care??? Ughgh!
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I have used Hospice care for both my mom and dad. Both times, it was a wonderful experience. I have never heard of people in hospice care being starved.  Both my parents died with dignity and peacefully at home. The hospice care workers were very loving to both my parents and the rest of our family. My mom was on hospice care a total of 3 times. So, I guess you can say she "graduated" off hospice twice. When it is my time to leave this world, I would like to have hospice care.
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He was placed in a facility that was called a hospice, and it is.. he was not allowed any type of sustinence. he remained there until he died. he was breathing on his own, and he died from starvation, and dehydration.
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I worked for 2 1/2 years in Hospice as a RN CaseManager. I loved my job. I feel it was a calling. I was terminated almost 2 years ago R/T a w/c case pending and they also said I spent too much time with patients/families. In Georgia, I don't think they can withhold food or any other type of nutrition, even IV's, unless this has been in writing by the  patient while they sill had clear mind. If not the POA could do this., but here it had to be in writing by someone and the MD signed off as agreeing. If he felt this was not best for patient, he would take time to explain to family his reasons. When I admitted a patient I would always tell them first..I felt laughter was the BEST medicine, but they could be sure I knew when/how to be serious if necessary. I assured them all that when the time came I assured them they would pass with digity. Even if I was not on call at night, I requested to be called if a patient of mine passed. I would bathe and if family wanted to assist, this was the last the they could do for a loved one. If they preferred not, they knew they could remain in room to assure the utmost of dignity and gentleness were used. Many times they refused and I let them know it was OK. I would ask for clothing,even though the were going to FH. If they wore adult diapers, I asked if they wanted reg. underpants. This was comforting to them  "Oh yes" they would tell me. After they were dressed and makeup/cologne and shaved-after shave..I gave the family opportunity to view in natural state if they wanted. I never had a one to refuse this. I would stay with the family until funeral home arrived..no matter how long it took and how far they had to come. Nuring was all I have done for 34 years. It saddens me that I will never be able to return due to physical but mostly mental problems. In 34 years, I worked in just about every area of nursing. When I started Hospice nursing, I was hesitate, but needed a job. I came to love it and patients/families.. I tell you this not for me praises, but to let you know there are some hospices out there that aren't just for the $$$$$$ , they truly want to help family and patients. It saddens me to know that this is what happened and it had to be experienced by anyone. This is only MY feelings. My heartfelt feeling go out to all involved.
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Avatar_f_tn
I remember going for the first time to see Ricardo.. the hospice employees seemed a bit in shock, as they stated to me that they had never taken care of one so young.. Ricardo was 18.  He had become a ward of the state upon turning 18.  Its very complicated.. but.. in the end.. his biological mother, and foster mother made the decision based on what ONE doctor told them, and SELFISHNESS.    When I saw Ricardo, he was breathing on his own, and continued to do so, until 2 weeks later, with no food and water that whole time, he passed away. My daughter and her boyfriend spent almost those two weeks in that room with him.  Ricardo had Muscular Dystrophy, and had his share of trials and tribulations., However, how this came about.. well.. is quite disturbing. After turning 18, he became a ward of the state, and was placed in a nursing home. he could use his arms, speak, and move about. His movements were jerky, but he could use them.. he had just gotten out of the hosptial due to a kidney infection, and was pushing the nursing button to ask for help for the pain.... well.. the nursing home call the buological mother, asked if they could sedate him, and then ... they did.... and he stopped breathing. It was stated that normal protocol for checking in on patients is hourly... well.. they estimated that he  had been without oxygen for about 25 minutes before he was found.  he was then transported to a hospital, where ONER doctor told them he was totally brain dead.
This was not true.. i was so angry . whenever i went to see him, he was breathing on his own, and with my own mothers experience with stroke, i KNEW, with the proper care, he would have been  alright.

after some time, i began to feel as though the biological mother and foster mother just wanted Ricardo to pass away, due to his medical problems,and the recent stresses of his continued hospitalizations.  I would hear whispers, you could see it in their eyes.

when i asked the hospice employees why he was not getting any hydration, or sustinence, they stated that this was at the request of the biological mother and foster mother, due to the physicans recommendation. i was incensed. they had not gotten a second opinion. Ricardo was a happy, wonderful light in this world,, a week before, he was laughing and joking around.

we watched Ricardo slowly die... it was a nightmare. I felt so very helpless, no matter what I said. It was heartbreaking. They didnt give him a chance.

I know that hospice can be a VERY positive and wonderful thing.. but in this case, it was a nightmare. When I inquired as to seeking investigation into the nursing home, i was told to just let it go, and that Ricardo was in a better place. Ugh.
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Avatar_f_tn
No matter what they say, you can seek legal action if that is how you feel. My heart goes out to you all. If there is anything that I can do to help comfort the family, let me know. Instances like this, is what gives hospice a bad name. So many people think when someone is placed on hospice that they will die. Some actually think hospice will kill them. Man, when pt. has to be placed on Morphine sdrops, outsiders tell them that will kill them. I am honest with family. I ask them if they had rather patient live 7 days wretching in pain or 4-5 days comfortable and many times they can converde with others until the pain increases so that the morphine dose has to be increased slowly in increments. I would try to educate family on decisions, but told them I would support them in whatever they decided. When the time came, they wanted pain meds. Blessings to you all.   Madlyn
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Avatar_f_tn
I have to disagree with you that hospice does not kill patients....I think - and have asked a hospice volunteer coordinator if they give extremely high doses of morphine to terminally ill patients and I was told that "yes, they do".  We all know that morphine shuts down your respiratory system, in essence, killing the patient.  Yes, they are not in pain, but how long might they have lived had they not been given leathal doses of pain medication?  I am a volunteer for hospice but I do NOT do nursing.  I am a visitor and listener only.  I am not quite sure how I feel about hospice's role in dealing with terminally ill patients.  They sped up the death of my sister who had cancer.  She was assigned to hospice and within 3 weeks she died.  Obviously this is something that is troubling me.
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Avatar_f_tn
I think you need to get out of hospice.  You seem to have a problem with drugs in general.  I have been reading your comments and they are extremely negative.  i am a Hospice Nurse and have been for over 8 years.  I have patients, some of them cancer some of them not, on high doses of morphine.  When I say high I mean they take 200 mg in the morning and 200 mg at bedtime and they have breakthrough medication in case pain becomes intense during the day.  They are walking, talking  people and they function fairly well with their pain controlled.  they get out to garden and play cards and go to the casino.  They are not overdosed.  The rule of thumb is the least amount of medication to control the symptom and this is increased in small doses.  It seems to me that you had issues with your sister and drugs in general long before Hospice was involved.  Cancer, when it finally shuts down your body, does it fairly quickly for some people depending on their history of other health problems.  Another point to ponder is that is your sister had pain that was pretty severe, and she had a history of substance abuse in the past, she would require more medication now to control the symptom.  That is just basic nursing and they teach us that in school.  I realize that not all hospices are great, but most out there are doing what they were intended to do.  To give patients and families an avenue of health care and allow people to die in their homes and to have the emotional/psychological/and physical needs met of both the patient and the caregivers.  So if you have a problem with hospice in general and from reading your comments, you seem to want to blame someone and hospice is quite convenient, so be it.  Please change what you are doing.  People that are dying can sense when someone is compassionate and truly cares for them and empathizes with their situation or is just going through the motions.  They do not need that injustice done to them.
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I just want to inform the people on this forum who state their loved one "starved to death" that when a person is dying, digestion stops. If you continue to feed a dying patient they will vomit and aspirate causing severe symptoms of distress.  I have seen families panic and at the last minute want a feeding tube, against the natural dying process.  What happens at this point is fluid builds up in their lungs and they drown.  It is death by suffication which is extremely difficult and painful. Dehydration at end of life is mother natures way of making it less painful and is a normal process. Patients at end of life are not hungry although their mouth does get dry.  Mouth swabs and gylercin help this undesireable symptom. I thought my grandmother was "starving to death" before my days as a hospice nurse. We fed her through a syringe even though she was refusing.  She vomited blood, aspirated and suffered a great deal because we were not letting her "starve".  I have learned so much since this time and feel it is important for people to understand this concept.
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Cookie, very well said.  She needs to educate herself on hospice care. Scary when people have incorrect information and spread their fear to others.
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I spent some time working in a private Hospice home in NY. It was wonderful,  simply lovely.  There is a distinct difference between the " dying" that most people think happens...and the reality. Dying isn't always quick...and some people experience the whole process. There comes a time when a patient will no longer be able to eat or drink. Most Hospices do not do involved IV's or things of that nature, so in effect yes, the patient does starve ...but that is not the cause of their passing. It's hard to watch...even as a non-family member. I am with you on people having the choice ...I really am! Also, we sent 2 people home from Hospice... and they did eventually pass away (in under 6 months)
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You have to remember that as a person is actively dying they sometimes lose the ability to swallow, chew or even use the bathroom adequately.  If a patient is being held OFF food/water there is generally a reason. One would think that water is easily taken, but some hospice patients will choke on plain water (it must be thickened w/ thick-it)
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