We're back in the ER due to very low blood pressure and lethargy. The nurse just put in the foley catheter ( a thin tube inserted in the bladder to drain urine) and they're suspecting a UTI (urinary tract infection) as the urine is super cloudy. This surprises me as I was hoping my mom's chronic UTIs would vanish since her tube feedings had the needed water content, and we give her water directly through the tube as well.
At this point I'm back to wondering if she should be on hospice at this point though the information I get confuses me every time I speak to a different professional. My concern is that a situation like this where she has a UTI she would be only be given oral antibiotics at home on hospice, not IV treatments, but she is resistant to oral antibiotics so does she die from a UTI because she can't get an IV? I know the main goal of hospice is comfort care not curative, but how comfortably can someone be if they have an infection which needs hospitalization? I have the same concern for pneumonia. I understand that if it's recurrent, we wouldn't keep hospitalizing my mom and allow her to be at peace at home. On the other hand, when my dad had pneumonia and was treated at the hospital he recovered fully and was happy for another six months at home until it came back and he didn't recover. If I had him on hospice during the first bout of pneumonia would he have died then because he wouldn't have gotten treatment for it?
Obviously, my mom hates going into the hospital; however, she wants to "live as long as possible-whatever it takes!" which leaves me struggling with what's really best for her, and does she really know? I would choose quality over quantity of life for her, but this really isn't my decision is it? As power of attorney (POA) I do have decision making powers for her medical treatment and wonder if I should stop all these hospitalizations. I struggle thinking I have to decide what's best.
When I've asked many palliative doctors, hospice nurses and her primary I get different answers to the same question at different times as to whether my mom could have IV treatments while on hospice for a UTI or pneumonia. Sometimes I hear that if I want her treated for anything then do not put her on hospice. Other times I hear hospice can help keep her out of the hospital and I can take her off hospice if I want her hospitalized and then put her back on when she gets out. I'm told hospices can do IV treatments, then a different professional tells me no they can't, or they can but they won't because they don't have the correct certified nurses or they don't use them because they're more expensive.
ETC., ETC,. ETC,
BLAH, BLAH, BLAH
C O N F U S I N G ! (we've been in an ER for 6 hours as I write and getting loopy. Time for bad hospital coffee.)
The amazing end of life consultant nurse, Jay Westbrook, helped me see things differently. He told me that having power of attorney gave me the responsibility not to make decisions based on what I thought was best, but to act according to honoring what her wishes would be for as long as possible. This has been incredibly helpful to me and I've already been telling myself this as I wait to see what happens on this latest hospital stint.
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