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My dad (93) has been hospitalized for several weeks now (currently in the hospital rehab). They tried taking him off the IV but he quickly got more dehydrated and confused. They now have stabilized him with an IV but he is eating very little of the yucky pureed food. They don't want him eating food at all and want me to do a feeding tube because sometimes he aspirates, but I refuse. He has so many issues and I just want him to have as much quality of life as he can have.


He's not able to do much rehab at all so I suspect that soon (once his 20 days are up), they will request I take him to a nursing home where MAYBE they will do a little rehab with him. It is what it is.


He's been assigned a palliative care physician and nurse at the hospital so I guess he must technically be on palliative care now? He has some good days when he's able to talk and laugh and make a little sense. He is in good spirits. He's more alert now and not sleeping all the time, so I guess, physically, there has been a small amount of improvement in the last week.


However because he's been in bed so long, I don't know that he will ever regain the ability to walk. I presume he's incontinent but when they do get him out of bed he will ask to go to the bathroom. And I'm sure swallowing is going to continue to be a problem.


What I'm wondering about is the IV at this point. I know if I go to hospice, that will go away and then he will dehydrate, his dementia would become unbearable and eventually he would die peacefully. I know he may end up with pneumonia because of aspiration which is a worse death (I presume), but hospice can make it less hard for him. The main reason that I haven't done hospice is because I do want him to continue PT and OT and hopefully gain some strength back. He wants to live and doesn't want to give up and would be opposed to hospice.


I guess I'm wondering if hospice absolutely precludes the use of an IV and/or PT/OT?

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Marydys, a patient on Hospice will not get PT or OT.
The primary goal of Hospice is to keep a patient comfortable when all efforts to “cure” have been exhausted.
There my be therapies offered if they help minimize pain or discomfort. For example a light massage to loosen stiffed limbs, Reiki therapy is often used, music therapy as well to name a few.
PT and OT would be something that could be done on Palliative Care
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Hospice is end of life care. It is recognized by the family, accepted by the family or more appropriately by the patient him or herself or their POA that there is no cure and that the end of life is near, and will occur in six months or before that. If you cannot accept that indeed there WILL BE dehydration as a part of this process you may not be ready to accept Hospice care if indeed this is the end of life for your Dad. Please do discuss this with your Dad and with his physician and with Hospice if you are POA and if your participation is required in these end of life issues. I am sorry for your grief. IVs only complicate death. The dying body cannot handle its own fluid. It often requires suctioning to clear airway, or lung fill, or as you said, there is aspiration of fluid. Looking up Hospice care can clarify a lot of things for you.
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My sister was told by hospice that they absolutely would NOT deal with an IV. Period. If she wanted to continue the IV she could NOT be on hospice.

You should speak with the local hospice providers to find out what they will allow.
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Have they tried feeding him in a wheelchair where he's sitting up? Trying to eat or drink in bed, regardless of how much they sit him up is nothing like eating when actually sitting in a chair.

My mother was designated as a risk for aspiration when she was in the hospital, but once she got out and was sitting up once again, they stopped giving her that awful baby food. She isn't really eating, but that's her own choice. She's existing mostly on Ensure and part of a one meal a day. The caregivers push fluids all day, and she has days when she's dehydrated, and days when she isn't.

If your dad has to be on an IV to stay alive, then that's pretty much against what hospice would do. Do the doctors expect his swallowing to improve at some point? If not, then I don't see the point of the IV. He'd eventually need a feeding tube, I'd think, and that's a big decision to make.
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marydys Apr 2021
Yes, they try to get him into a wheelchair for meals but they don't always do it. He is swallowing better but I don't know how much better he will get. The main thing is he was always dehydrated before... always, even when I pushed liquids. Since his next place will be nursing home or memory care, I'd like him to still be on the IV for hydration... because when he's hydrated I still see his personality and at times he has conversations. He also has a severe low blood pressure problem that hydration is crucial for. Without the IV, with only his drinking liquids, I think he would quickly die. His dementia is all vascular and lately got worse when he had a brain bleed, but before that most people wouldn't have thought he had dementia. 2 months ago he was walking 1/4 mile a day with a walker and accompanied, dressed himself, fed himself. Now he can't even get out of bed by himself. He had more strength right after his surgery than he has now because he's in bed ALL THE TIME. It's amazing how someone can be improving in some ways but weaker in other ways.
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Palliative care is often the first step to Hospice.
Palliative care teams and Hospice teams will communicate and if and when someone on Palliative care seems to be ready for Hospice this will be discussed with the patient, the family as well as the Hospice team.
Talk to the Palliative care staff and ask them what the policy is about IV’s. Often they will not do IV mainly because there is usually not round the clock staff to change IV or start one. (This is the patient is at home) Hospice also will not have a feeding tube inserted BUT a patient with a feeding tube already in place the feeding tube and nutrition can continue on Hospice.
The best thing to do would be to discuss this with Palliative care. You could also ask if they would permit private pay for IV hydration ( if so dad would then pay out of pocket for the IV)
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marydys Apr 2021
Dad will never be at home anymore...even with hospice so wherever he goes, I would like him to have the IV even with hospice, if that's a possibility. I also like for them to try to give him PT/OT. It's probably useless but I feel he would want it.
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I am dealing with a very similar situation with my grandmother right now- you can message me and we can talk-- I don't think they like to hook up the patient to the IV because we tried. i had to MAKE them treat the UTI i knew she was having! also, we just got PT to come to the house- they only come four times.

my 86 year old gramd-mother fell, broke her shoulder (few hospitals stays) tried a nursing home for rehab that was a mistake and now is not walking i been dealing with this since Jan 2021.
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He would not be allowed to do PT or OT under hospice care. I'm not sure about the IV, but if that's the only way to keep him hydrated they might would continue to do that.(I believe they only do that in case of an emergency) If he is an aspiration risk, he should be drinking thickened liquids(I used the product Thick It for my husband)and continued on pureed foods.
You are correct in saying that because your dad has been bedridden for so long that chances are he may not regain his strength. My husband after having aspiration pneumonia and almost dying, where he remained in the hospital for over 2 1/2 weeks, came home completely bedridden and remained under hospice care for the last 22 months of his life in our home.
I certainly don't think it can hurt to get hospice involved at this point in your dads journey. It will be extra sets of eyes on him, and all they do and provide is covered 100% under dads Medicare. I wish you well in making these important decisions for your dad.
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