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Mom has Parkinsons and is not eating well. Shes very weak and needs max assistance to stand and transfer. I am thankful for all the services Hospice provides and I know Mom's condition will most likely not improve drastically, but want her to have the help so she be the best she can be. We had a great PT person working with her (paid by Medicare) but now that hospice is on board they are saying we cant use our therapist anymore and we have to use theirs. Is the only way we can use our PT person is if we private pay? Why won't hospice allow our PT agency to continue?

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Hospice is for end of life. Any care that is intended to improve and lengthen life is not provided by hospice. If you wanted to take her to the hospital for treatment, hospice would have to be dropped...for this same reason.

think palative care, not restorative.

So..I wonder too, since your Mom has now a life expectancy of under 6 months ... what is the point of PT for those months? It is hard on her, and long term improvement is not going to happen.
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worriedinCali Mar 2020
Hospice isn’t just for end of life anymore!
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Yes and no.
If PT will help with pain and constriction of hands, arms, feet...then PT could probably be ordered by Hospice. PT to gain strength would not be approved by Hospice.
But there would be nothing to prevent you from hiring a PT to come in and give PT if you were to pay for it out of pocket.
In the case you describe Hospice would not approve PT there is equipment that can be used to help a person transfer a Sit to Stand if the person has upper body strength enough to hold on to a handle for support. Or a Hoyer Lift if they have lost upper body strength.
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If they feel that it is for "comfort care" then yes. As in range of motion exercises and so on. And if it is for quality of life, some more mobility, if they feel it will help quality of life. Remember that hospice doesn't "treat" for cure. It treats for comfort with the recognition that the end of life is near. Immobility if hard on body, creates body ulcers and pain. Stress the need is for comfort and quality of life for time left and you have a better chance at some evaluation.
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Is it so bad to use theirs. At least Mom gets some exercise like Alva says.
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When a patient transfers to Medicare paid hospice status, the usual Medicare benefits are not applicable. Medicare instead pays the hospice service for all medical services. You cannot choose to go outside the hospice approved service providers unless you pay out of pocket.

The hospice service you chose told you that you must use the hospice contracted PT, not any outside the hospice organization that you might have formerly used. So it appears that if the hospice approves PT (they did not deny PT services,) and if you want Medicare to pay, you must use the PT through the hospice. Give it a try.

Your alternative would be to have hospice terminated and go back to the regular Medicare system. That system is geared towards active treatment with the goal of recovery.
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While Mom was on hospice, she got some PT, mainly exercises for her balance. She didn't get much therapy since there wasn't much they could do, but he tried! It did make a bit of difference.
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My dad truly wanted to be able to walk again during his last 15 months in hospice care. He was 89 when he died and had suffered bouts of pneumonia and colon cancer surgery before entering at-home Hospice. He simply was too frail and weak to be able to stand on his own. I paid out of pocket for his PT (hospice denied payment) because he really wanted to try once more to walk on his own. Lasted just for a few weeks until he sadly realized his strength just wasn’t going to return. So hard to watch as strength diminishes in someone who was so active most of his life (he was never eligible for knee replacement surgery prior to hospice because of diabetes).
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Hospice is to provide comfort care for those not expected to live more than 6 months.

Physical therapy is for restorative care for folks expected to leave the facility so they can function better when they get home.

Private pay will probably be you only option.
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worriedinCali Mar 2020
Not true. Hospice isn’t just for those expected to live 6 months or less anymore AND hospice will provide PT. If people would actually read the original post, hospice will continue the persons PT BUT they have to use the hospice’s provider. NOT the one they have previously used!!!
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No.

Eventually they will stop eating and drinking, which means you will have to either let them die of dehydration (can take over 2 weeks and it's not pleasant even under hospice), or get a PEG feeding tube in. You will need to revoke the hospice, put them back on regular Medicare, put the PEG tube in, then discharge them back on hospice. You can put your mom on rehab if in the hospital for 4 days then after discharge from rehab put them back on hospice. If you opt for feeding tube there is a ***LOT*** you have to know to properly care for it.
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worriedinCali Mar 2020
Wrong. Hospice allows PT. And many patients will die from their disease rather than dehydration and starvation but go ahead and push your agenda
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If you want to confirm that what hospice is telling you is accurate, try contacting the New York Health Insurance Information Counseling and Assistance Program (HIICAP). They provide free counseling on Medicare coverage, etc. 1-800-701-0501
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My mother was nearing the end of her life when she got physical therapy to strengthen her when I had to leave after my caregiving stint of over 6 months. My brother could not do the out-of-state caregiving. She was 94 years of age.

Good luck to you.
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