My husband and I took in my friend who had no resources and nowhere to go. We had her Oncologist refer her for hospice care which she has been receiving in our home. She requested to be transferred to a LTC facility and we have been trying to make that happen for over 5 weeks. Hospice has made this extremely difficult because they want her in a facility they partner with in GA or to sell a hospice contract to a facility in AL. She is an AL resident receiving care in GA. She wants to be closer to her 13 year old daughter and who can blame her? Fast forward, the site of her chemo port has become infected and she has started running a high fever (101.6). Hospice has ordered her antibiotics, but unless this port is removed, it will continue to become infected. She has asked me to take her to the hospital in AL and once there she can express her wishes to be placed in a long term care facility in that area. Can the hospital place her and if so can I fire or revoke her current hospice provider?
Ok, hospital has a Hospice team, but no Hospice facility. Spoke to one of the representatives, who started pushing me for Hospice care at a private facility at a cost of $14,500 a month. He is not eligible for Medicaid, and we can't afford to pay that much. I told her this three times already, but she never discussed any other options with me.
So, I am faced with bringing him home, with a home health aide, which is also not inexpensive, cost is $128 for the minimum 4 hours per day.
He is a Veteran, served in Korean War and receives a pension from DoD. I contacted the VA, which does offer hospice in a couple of their hospitals, and they told me he had to be 70% disabled in his military records in order to qualify.
Medicare, meantime, does not pay for Hospice or any kind of long-term care in a nursing home, etc. The whole system sucks.
MediCARE will not pay for Long Term custodial care costs but Medicaid will. MediCARE is about hospitalization, acute care, rehab & hospice and to pay both the facility providing it (a traditional hospital, an acute care hospital, free standing rehab place or via rehab done within a SNF) and pay the person providing the care (MD, PT, OT, ST,etc.). MediCARE is federal & portable between states if a facility or a vendor accepts it.
Medicaid will via pay for custodial care in a facility or for inhome care through a community based Medicaid program or a Medicaid waiver.
The hospital your dad is in has a discharge planner and they can and should be working on getting him placed in a SNF that has a open bed. You do NOT have to have him leave the hospital and move into your home. If you realistically cannot provide the level of care and oversight he will need, you have got to let the discharge planner know - & in clear terms - so it’s on the hospital to make this happen.
You wrote that he will not qualify for Medicaid. Why?
Has he applied? and been notified as to why ineligible?
If it is that dad still has $, and doesn’t want to spend it, that is flat not going to work. If he needs to be in a facility, then he goes in as private pay & spends down to 2K then files for LTC Medicaid.
As an aside, if the hospice “rep” was hitting up private pay @ $14K a mo., this likely was for the monthly private pay room&board rate in a facility. Hospice, itself, would be billed to Medicare. There is someone on this site whose dad was paying close to 20K in the DC/Virginia area. We have a friend paying 8K a mo private pay for a NH in MS. 14K is on the high side but not too crazy. The private pacosts of care are staggering. & why Medicaid gets filed for. They can and do outlive their money.
The hospital won't do all the work to place her, but can assist with applying for the Medicaid bed. Start calling facilities where she wants to go so you have the names of a few places close to her child.
Get her to the hospital and that should revoke the hospice care - call them and tell them their services in your home no longer needed because she is in hospital with plans to go to NH.
Our experience with hospice was horrific. They do next to nothing and deny care for the simplest things.
1. Bacterial showers, from the infected port. My sister experienced this; it was terrifying. At the conclusion of chemo for that day, the port was flushed. We later learned that it's possible a minute form of bacteria can be flushed through her bodily systems, causing the shower.
In probably no more than 5 minutes, she went from stable to violent, uncontrolled shaking. I've never seen anything like it. Fortunately, she knew what it was, I wheeled her back into the chemo section and one of the nurses gave her Tylenol (who would have thought it could be used for something so violent?), and wrapped her up to keep warm.
After about 1/2 hour, she was stable enough to leave.
2. Terminating hospice involvement. I signed a contract, and can't imagine that anything this serious wouldn't be covered by a contract. Read the termination clauses to find out how to terminate this uncooperatve hospice company.
If the hospice company won't cooperate, contact an ombudsman for your area to help with assistance.
And good luck; this sounds like a very challenging and emotional situation.
The sister has expressed a desire for this placement, what makes you feel like you not liking any of her choices is, frankly, any of your business.
These situations are hard enough.
Get social services and possibly Adult Protective Services involved.
As for hospice care, the patient as alert and oriented and capable of making own decisions can discharge herself from any hospice agency at any time. Hospice is a choice, not a mandate. Any reputable hospice is required to arrange appropriate transfer of patient services to another hospice of patient choice.
Typically, when one goes on hospice (at home or at a facility); life expectance is presumed to be 6 months or less. A hospice physician would typically certify the case is "terminal" and the time left is 6 months or less. Further, the patient agrees to "no further medical treatment" and DNR is added to the record (do not resusitate or perform life saving procedures). A patient on hospice would receive palliative care; to keep them as pain free as possible and comfortable. So "going to the hospital" would obviate the agreed no medical treatment aspect of hospice and that may be part of the issue here (?).
Sorry, having a "chemo port" would not be something a person on hospice has as the patient would have agreed to stop chemo as part of going on hospice. Yes, the port should have been removed when hospice was started.
She can change her mind and say she no longer wants hospice. In terms of you firing the hospice entity; you would have to have a correctly executed POA and be her "medical agent" as part of an advanced directive. Do you have that legal paperwork in place?
Again, back to the insurer. If she is -- given no resources -- on Medicaid, trying to move to her another state can be very difficult as each state Medicaid program is somewhat different.
Getting a social worker involved may help, but there are way too many questions here that do not add up to provide some suggestions...
Perhaps an entirely crazy idea is to drive her to GA near a hospital near where her 13 year old daughter lives. Stop at a restaurant on the highway and then call 911 say you just stopped to eat and this woman collapsed, she is having breathing and heart pain and have them take her to the hospital there. You do not go with her to the hospital....Then that hospital has to figure this out.
“As others have said, if she has a 13 year old daughter, she's most likely NOT on Medicare.”
Our children were about 17 and 12 when my husband went on Medicare at about age 45. He received Medicare benefits two years after he was approved for Social Security Disability benefits due to Young Onset Parkinson’s disease. Medicare for disability has no minimum age requirement.
I can reenroll her again.
Hang with me on this as it can be confusing…. LTACH are speciality care facilities, technically are a “hospital” so should qualify for Medicare Part A. They are either a freestanding facility (the biggest group that are this type are Kindred Hospital system across the US) or will be their own floor or wing in a traditional hospital but are managed by an LTACH (patients on the regular hospital side get transferred into the wing).
LTACH are not regular hospitals…. They do not have an ER or ER, do surgeries, have labor & delivery units, etc like a hospital does. They tend to be abt care for those end stage of a disease that need way way more complex care that can be done in a NH or by in home hospice. You have to be referred into one. Not a walk in situation.
if there is a Kindred anywhere close to you in GA, I’d try to get her into it and then she might can be transferred to a Kindred in AL.
My MIL was in a NH and got pneumonia. Went to the hospital. Got a secondary infection atop a very stubborn pneumonia, then got septic. LSS started to have cascading organ failure. That NH was not going to take her back as way too high of a level of care needed. And the hospital wasn’t going to ever get her better. She went into an LTACH adjacent to the hospital. In looking at the place it appears to be part of the overall hospital but is it’s own facility with an enclosed catwalk to/from. it felt like a private patients type of medical office building at the ground floor entrance.
Mil was there abt 3 weeks b4 she died & on complex cocktail of black box type of drugs via IVs. The nursing staff were pros, they were really amazing, it was acute complex care. What was surprising to me was that most of the others were not elderly, they were all younger and almost all end stage in their cancers. They might be there several weeks & if they got better or had a remission, then discharged. But for most, this was going to be their last facility even if it meant 3-4 months. It technically is a hospitalization so insurance should cover the costs. Again she cannot enter an LTACH on her own, it’s via a referral only. If the hospice seems clueless then her oncologist should know of LTACHs.
VITAS & Compassus are hospice groups that have LTACHs. Often managed as a wing or a floor in a hospital. But it’s technically an independent facility & not part of the hospital for billing.
I think what would happen if she was to become hospitalized is that hospice would be revoked (stopped & suspended). The issue would be that once on hospice doing things that might - yes… might - be considered actions to cure her disease nullifies the hospice contract. If the hospital were to do anything that might be considered this, it’s an issue for hospice to pay.
This is how it was described to me: if I was on hospice for end stage melanoma, I would be provided for care and medications for comfort and palliative care in my home or at a NH but if I broke my leg and went to the ER, my leg could get reset but if while in the hospital I was placed on any type of cancer treatments or if my cancer got evaluated at all, that would completely nullify my hospice coverage. Hospital tend to ignore hospice orders, hospital are all about diagnosis & actions to cure or treat. That when this kind of stuff happens, you go off hospice while in the hospital for anything then go back onto hospice when you get discharged from the hospital. Someone will have to deal with getting her on other than hospice insurance. Hospice will NOT pay for hospitalization other than costs limited to leg break. It will not be simple.
But I have a ? for you? If she has a 13 yr old, how old is your friend?
I ask cause if she is too young to be on MediCARE or is not on a special eligibility category for MediCARE, then what her health insurance is will matter big time. MediCARE is totally federal and so it is portable accross State lines for hospitalization (Part A) & for part B if on Original MediCARE and for hospice.
But if she is on Medicaid? that’s State specific to eligibility. If this is it, just how is she as a AL resident eligible for GA Medicaid?
Or is she on a employer sponsored health insurance or COBRA?
I’d really really really encourage you to find out precisely as to what the requirements / coverage limitations are for her current health insurance & hospice as to coverage should she leave GA and go to a ER at a hospital in AL. She might not have any health insurance coverage and that would be another crisis situation as that tends to mean an emergency ward of the state action in AL gets done on her and the new court appointed guardian then determines her care plan.
Is there a father for the 13 yr old that the teen is living with?
If not, a grandma or Aunt? And has this been done with any kind of formal legal action as to a responsible adult named for the 13 yr old?
whatever you do never ever sign off your name as to any type of responsibility on her. As any bills not paid, will be on the hunt to find someone, anyone, to send a bill to.
Once in the hospital she should ask to talk to a Social Worker and explain her wishes.
(Are you going to take her to a hospital in the area where she wishes to remain? )
Once in the hospital and talking to the Social Worker they can quite possibly order Hospice again and Hospice can help with placement in LTC.