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My husband has dementia, congestive heart failure, chronic kidney disease, diabetes, anemia, and a host of other illnesses. He is 100% bedridden due to pressure ulcers on both feet. He was hospitalized four times last year, and the last hospitalization required a blood transfusion. He now receives hospice care through the VNA. His backside turned purple overnight the other day, looked as if he had been beaten. I requested labs, and was told no, although Medicare hospice does not prohibit such tests. The VNA does not want to pay for it. My husband is not close to dying. His vitals are strong. I was convinced to move him to hospice services because I could no longer care for his daily needs, and the VNA was not getting paid by our insurance company once PT/OT had to stop, He needs to have his feet treated by nurses three times a week, and I needed a home health aide seven days a week, so this seemed like a good solution. Now, I'm not so sure. Denying blood work is sending a message that sounds like, "He's going to die of something, so why bother?" If anyone has gone through this, I would appreciate hearing about your experience. Thanks.

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I think hospice you do not elevate care for the chronic condition, just provide comfort. Unless there is something new like a fracture. I am curious what bloodwork would help with the backside. It sounds like an unstaged pressure spot which just requires turning.
If you want to change to palliative care then he can be treated for what can be treated
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You say to us "my husband is not close to dying".

JM, I would discuss this in full with hospice, with their social worker, with their clergy, and RN. There is or seems to be a basic misunderstanding her of what hospice care is. Hospice care basically is END OF LIFE care, care that recognizes that indeed the patient IS DYING, and WILL DIE soon. And that now the important thing is not curing what crops up as a problem, but of keeping the patient comfortable. ONLY THOSE labs needed for comfort are done. Only those measures needed for comfort are addressed.

If your husband is now too ill to make his own decision, and you have made the decision for Hospice, then all of this should have been explained. If you no longer want your husband on hospice care you may get the choice of palliative, which does allow to testing and treatment to a greater extent.

I am so sorry for this misunderstanding. Speak to your own hospice ASAP. Tell them that you do not now want end of life care for your husband if you are his POA. And speak with them in detail.
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Agree with MAC--Hospice is EOL care and you basically get comfort meds and medical equipment that deals with the care needed.

Any kinds of tests to see what 'stage' the disease is at is usually denied. Most Hospice groups provide emotional support and the EOL meds.

Once you start 'back in' with medical procedures, you're no longer in hospice.

I'm not there with you, so I can't ascertain whether or not he's close to dying or not. His vitals show one piece of the puzzle only.

Maybe YOU aren't ready for him to be in Hospice care. You sound a little like you were pushed into it. Maybe a talk with the Hospice SW is due.
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On further reading your post. You indicate that you were convinced to move him into hospice because you can no longer care for him to match his needs. Perhaps you were under that impression because he is getting more custodial care that you cannot afford? If you have second thoughts, then you remove him from those services and place him in a NH, hire the aid again, or take him home. Is this the story here? If so, talk to Hospice again. The plan right now is end of life care and he was admitted there because the professionals believe he is end of life.
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First I have to say, WOW....you get aides coming 7 days a week, and nurses coming 3 times a week? That's unheard of in the world of hospice unless your loved one is actively dying, and even then it's usually only the nurse coming more often.
My late husband who was completely bedridden was under hospice care for the last 22 months of his life. He had a nurse come once a week(for about 30-45 minutes)to start, and aides that came twice a week to bathe him and then leave.
There were several times when the hospice nurse thought my husband had a UTI, and she did order that his urine be tested to verify, but usually if one was suspected they just automatically put him on an antibiotic.
I was going to suggest switching to a different hospice agency, but if you're getting all that help right off the bat, you might live to regret it as I don't know of any other hospice agency that will give you the help you're getting now.
And just so you know, my husbands vitals were strong too, pretty much right up until he died, so not sure you can go by that.
Your husband has many many issues and he's not going to get better, so not sure what having blood work would do to change things.
The purpose of hospice is to keep the patient as comfortable and pain free until they leave this world for the next. It sounds like perhaps you didn't fully understand their purpose as you were just wanting extra hands there helping you.
You can cancel hospice any time you want, but just know that your husband's not going to get any better.
I'm sorry for that, and wish you peace and comfort as you travel this journey with your husband.
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I'd say the reason why they said no is because labs are not indicated. I'm no doctor, so I don't know for sure, but I assume you aren't one either. Hospice doesn't mean that no blood work will ever be done, though.

My mom had blood work done while on hospice. It was a bit of a battle because the hospice nurse believed Mom had developed gout, and the doctor (who never examined her) didn't. He wouldn't order labs or prescribe gout medication, either. As he was the regular doctor at Mom's nursing home and serving as her hospice doctor, too, the nurse went over his head to the hospice's staff doctor who ordered the blood work.

And yes -- surprise -- she had gout.
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Please ask the hospice nurse if this is the beginnings of a bedsore or a Kennedy ulcer and how they plan to treat it.
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FG, thank you for explaining that. My dad was under home hospice care for CHF. 3 months which was difficult for us all.
I can't even imagine how hard 22 months must have been
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Funkygma, I know Hospice has different levels of care, but guess I'm not understanding how they can come for almost 2 years. I believe my father had pallative care although the nurse was less than helpful. He still took his regular medication (3 prescriptions)& it was delivered by a small independent pharmacy.
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funkygrandma59 Mar 2023
Catskie62, my husband was under full hospice care(not palliative)in our home, for the last 22 months of his life. A person can stay under their care as long as needed as long as they continue to decline, which my husband did.
Being under hospice care that long is certainly not the norm , but it's not unheard of, as I've heard of others being under their care for just as long or even a little longer.
And remember when it's in home hospice, 99% of the care still falls on the family, which in my case was me.
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