HELP give us answers the HOSPICE agency won't. THEY dropped little girl.

Hello. Can u explain how "Hospice" work's and does it sometimes' work in different ways'  as to the "rules?"

I know a child that has been on Hospice for many years. She was told she was terminal at ate 3 YRS. The doctor's said she had 4-5 yrs.to live. She almost died several times due to this or that...but survived to now the age of 18 YRS. She is in end stages PH.
She was in Hospice since 2006-2008 in one state until she moved, and then in another state while she was there 2008-2010....then moved again for the last time and entered another hospice in2010 and was dismissed a few wks ago with the director stating "she is not deteiorating"...she has and always' has been slowly dying...NOW she is in end stages and this HOSPICE let's her go, just like that...they say the Medicaid won't pay if there is NO decline. Her doctor (cardio) has not replied yet as I know of...But how can they just do this?  She at this point need's it more than ever, she is NOT on huge pain med'.s just for sever HA's...but her lungs are so she could develop any decline at any moment, and the idea for HOSPICE was NO HOSPITAL, so, in your opinion, is this right to do on their behalf?
Should they NOT have called her doctor? She never had ANY doctor examine her before they dismissed her. All they told her mother was that the nurses last few visit's show that she is not any worse off. FYI: all the nurses were different ones...and who can get a good example of a sick lung and heart from "different" people over weeks'?....APlease help me help deliver information that will help us/mom know what to do and how To PROCEED.  thank you grately...

[Brookit]

NO help here...thankyou...to hard to answer.

[TTinKKerBBell]

I don't know the answer(s) here either - BUT, it has always been my understanding that Hospice is available to those who are terminal - with a life expectancy of 6 months or less.

None the less, I would suggest You pursue this - not that I know what proceedure You might take at this point - only that I suggest You Do Not Give Up.  Hopefully, You will gain info from this forum - but continue to pursue EVERY avenue You can think of!!
Good Luck!!

[lisaob1]

i worked in a cancer care hospice for the terminally ill..and to hear how this poor girl has been treated for all these years really isnt acceptable whatsoever...,im sorry i cant be of any help but you are right in what you are saying and you should fight this,with all the very best of luck

[Brookit]

thank you, I am not fighting, I/we have not the strenght...it's just what is fair to  the child...that's all...but the family needs the help too...it's so hard anymore...we're breaking down...thank you again for shedding some light "our" way...

I am so upset that doctor's won't "speak" out, say what they really feel...all due to what's at stake for them. it's so sad...No one seems to care, until it happens to them.

[Brookit]

I want to say thank you to you as well...this experience has broken me apart...along w/other's who care and R the main one's involved in this terrible world we see everyday in the eyes of this child.

the Hospice did us wrong, yes, it has been directed to the regional manager,and he is working to make them a hopefully better "people"...
  At this moment, their is NO real doctor now, as the pediatrician the child had has left.and HOSPICE was doing all the medicines planning/ordering...so, in a new town, trying to find a pediatrician that will NOW take a child so ill...well...this is going to be hard...

U know of everything I've said here, I come back to what Dr. Jonathan Rich told me...well, first in the CFH forum, if you see his message, he states he's helped me all he can. and repeated messages are not allowed...I have NO repeated messages...just posts in different forums. I am sorry for you doctor that you avoid my question above on the forum...it's just easier to make me feel bad about what I may have done wrong here than you answering  a question, or not even answering it...just stating something that let's me know you might just care a little...thank you for letting me know what you're made of...I didn't even NAME the hospice either...I'd expect you to not say anything...but to down me for posting and you're already answering me about another question due to  the congestive heart failure...I'm glad I'm not your patient...that's what really bother's me about these forums...do we really get good answers, advice...NO...we don't...and some people suffer for it...some like a child...

[lisaob1]

hi..this is so heartbreaking..in so many ways. this just should not be happening in this day and age,i know its only been a couple of days but are there any developements? how are you doing?