Question about hospice: Hospice doesn't seem to take my hubby's UTI's seriously.

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Hubs on hospice 9 months now for Parkinsons. Also has late stage dementia. We are pretty good about identifying when he has UTI after 7 years of formal dementia diagnosis. He had smelly urine starting about 2 weeks ago, hospice kept telling us to push fluids, he got more passive, then a few days ago the smell was overpowering. I called hospice they took temp (normal) etc & nurse said have to wait till it's over 100. Dr just said push fluids & call in the a.m. Next day his temp was 99.2, then 99.9, he was sweaty & urine very smelly, then agitated and definitely uncomfortable. After refusing all day our caregiver called the hospice owner & Dr.; ordered cath urine for culture (he is incontinent) & I dipsticked it before the nurse took it away & it showed max infection. Dr. still wouldn't order an antibiotic. So I called his primary & told them what was going on & they immediately ordered an antibiotic which we started him on last night. Our Dr. said they'd contact hospice & tell them. Well, today he's a new man. Next time his urine smells I'm going to call his primary right away unless hospice Dr. will take urine for culture & start him on best guess antibiotic. Have I misunderstood the role of hospice? I thought they were supposed to take care of stuff like this.

Answers 1 to 7 of 7
Did you speak to the hospice doctor yourself?

I wouldn't be surprised if hospice policy is to ignore the low-level grumbling uti's that are extremely common in very frail elders; but the rising fever and the strong odour should have made it obvious that treating this infection was not at all incompatible with palliative care.

Which makes me wonder if it was a communication problem, which I guess wouldn't have been so if you'd done the communicating. Do by all means take it over, you are your father's advocate; but why not get in touch with the hospice doctor yourself now, with the crisis well in hand, and see if you can establish a good, constructive relationship there.
Thanks for suggestion. I never thought of this. Dr. is sort of a shadow figure. But we did get our culture results back & it turns out he's on the correct antibiotic. I think I was just hoping that hospice would take care of everything. But there's no substitute for taking care of things oneself! Re communication problem, I don't think so. The nurse told me that if he's had antibiotics within the last 6 months the doctor's policy is to do culture first. Maybe that's okay for SMELL, but not if he's SICK. By the way, it took THREE DAYS to get the culture. He'd have been dead by then! Or certainly miserable for three days. Not very palliative, huh.
I seem to recall that urine cultures take 3 days to grow.
Top Answer
Barb is correct cultures do take 3 days.
Many hospices do discourage the use of antibiotics because they are regarded as curative. You may agree or disagree with this philosophy but if you want something treated you do need to speak up when things are not gone the way you want. Many people actually don't want their loved ones treated.
Believe me, I understand how torturous this is! Not suggesting that you or hospice is doing anything wrong, but you both need to understand what the thinking is behind Hospice philosophy. I've just been through this with my mom.
The nurses explained that if he'd had antibiotics within the last 6 months, they want to do a culture first. They are trying not to give them antibiotics any more than necessary. I get that, because antibiotic over use can cause superinfections that aren't susceptible to any of the antibiotics. Also side effects, more pronounced in elderly. I too wondered if they just don't want to treat him because he's on the way out, but the nurses assured me that isn't it. Nevertheless, he was suffering, his last UTI/antibiotic was just over 6 months ago, and I just decided I didn't want to go with the hospice's decision. The only thing he "gives up" to qualify for hospice is curative treatment for his terminal illness (Parkinson's) and since there isn't any curative treatment he really hasn't given anything up. Medicare pays for treatment for anything other than that diagnosis. And don't get me wrong, it occurred to me that maybe I should let it go. But then when he got a fever and was obviously in distress and they still didn't want to do anything I just decided to take care of it myself. Oh, and before hospice his doctor always did a culture and we had the preliminary results (WBC's etc in the urine) the same day so if there wasn't anything in there we didn't start an antibiotic, and the culture results came in two days.
I recently had to place my mom on hospice. Had a very frank talk with MD and nurse and that I considered antibiotics to be comfort care, as having a temp and the other bodily reactions to infection cause discomfort. So that is how I look at the use of antibiotics on someone who is on hospice.Basically my mother is a do not resuscitate but that doesn't mean do not treat.Anything that can cause or is causing pain or anxiety is to be treated.There just isn't going to be any ventilator, cpr, defibrillator or feeding tube used. Also I know in my mother's state she is very vulnerable to sepsis from any source, we just do the best we can, good hygiene for one which also makes her more comfortable. But if the septic episode progresses to where her bp is unstable there will be no aggressive use of iv drugs to treat someone that is hemodynamically unstable. It is a hard call, what is comfort care and what is just extending suffering. So I just take it day by day which is all you can do anyway. There will come the day she will no longer be able to take in oral food and fluids but her pain and anxiety will be very well addressed. And for those of you with Loved ones on hospice please for your sake get on the computer. Start educating yourselves about what the human body does when it is shutting down. The knowledge, though disturbing, will help you thru this process. Hugs to you all.

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