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.
I can't even imagine how hard 22 months must have been
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.
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.
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.
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.
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.
If you want to change to palliative care then he can be treated for what can be treated