I just got a call that my great uncle is in kidney failure and doesn't have long to live (hours to days). This is a shock to me since I was just there at his home about 12 days ago and spoke to him about 8 days ago. There was no mention of this. His daughter told me it started a few days ago and in the last 24 hrs there's been little to no urine output. He has edema in his arms and body and he's being given Lasix by hospice or medicaid. As far as I know they haven't done any blood work. He is on hospice care purely for financial reasons following complications from surgery in March.
Apparently my uncle had kidney issues and no one knew. He always told me everything including all his medical problems. I never heard of any kidney issues. I guess that could explain the back pain he's had over the last year. He had lab work, x-rays, and something else for his back and no one ever mentioned his kidneys. He just had lab work in March! He does have a legitimate back issue, but the pain he described and the location never made sense. It makes sense though if it was from kidney disease.
I would love to have some input on this. I don't think his daughter is thinking clearly. She's a bit scatter-brained to begin with and it's common for her to get things confused. Something feels off and I want to make sure uncle is taken care of properly.
My mother has heart failure and kidney failure and has been on Lasix for six years. It's not abnormal. Beyond that, I can't comment on the situation.
If he's down to hours/days, getting another hospice company up and running is probably futile and might make him even more uncomfortable. However, know that you can always fire a hospice company if you don't like how they're handling a LO's case. I fired the hospice that first worked with us for my dad, and the second one was wonderful.
That doesn't mean that what he told you was accurate and complete, of course.
Depending on what the cause is, the visible oedema in his legs and arms may be only the tip of the iceberg. If so, it will also be in his gut, in his lungs, overworking his heart, affecting his oxygen supply and indeed affecting his kidneys' blood supply so that their function is reduced, as part of a vicious circle. There is probably not much option but to treat it.
I'm very sorry for how sudden this feels to you, and of course I'm extremely sorry for what the poor gentleman is going through, but if they're giving him Lasix they clearly aren't just allowing him to die. I really wouldn't second-guess your cousin on this. Ask questions by all means, but ask them to help her know what more to find out. Don't add to the stress she's under.
Tell your cousin and him NOW. That they can call 911 and cancel hospice in the same breath.
There is no reason to just let him die if he is not terminally ill. Hospice usually requires a terminal diagnosis, but they could be sketchy enough to lie.
Diuretics and genetic kidney disease, add polycystic kidney disease and it becomes a tight rope. Make sure that any doctor you see understands that you require kidney sparing meds.
Fluid retention becomes critical to prevent CHF, kidney and liver issues.
I rely on my pharmacist and several medicine web sites like https://www.enhanceclub.com/ , to research interactions
My uncle is in his own home. How he got on hospice care is a bit of a puzzle. He had complications from a surgery that left him unable to use his legs or even sit in a chair.
He spent a month in rehab, then was on home health care and doing great. But the cost of everything (especially the diapers) was too much. Somehow hospice became involved. His daughter was so overwhelmed and everything sounded so great that she went ahead and signed the papers - she didn't know what hospice meant. From that day foreward my uncle has gone downhill. They of course took away all his physical therapy that he wanted and that worsened everything. They (uncle and his daughter) didn't realize that would happen.
He was put on questionable medications that no reasonable doctor would ever prescribe. We're talking about 4x the recommended dose. There was no legitimate reason for this. This particular hospice company is totally sketchy. The people that run it have no background in healthcare. I found a complaint online from a nurse that worked there. Her accusations back up my suspicions.
No one knows of any legitimate health reason uncle was put on hospice care. If there was a legitimate reason, the family was not informed. I don't even know what doctor ordered it.
Basically, he was ok 8 days ago, no one knew of any kidney issues. Then yesterday all of a sudden his kidneys are shutting down and he's already in the active stage of dying. I just don't understand how this Lasix came into play. I suspect that the edema is from the dying process, not necessarily from the kidney issues if there are any. The timeline seems to match up with that. What I'm seeing appears to all be part of the dying process.
It's too late to do anything. Because of his mobility issues, the family thinks it's better at this point to let him die. I agree, but I still know something is fishy and that bothers me.
My other uncle was on hospice care last year in his home and I was his part-time caregiver for a while. I was involved in every step of him being on hospice care. In this current case, something is suspicious. The hospice nurse is not even that involved in making him comfortable. I see signs of distress based on what the LPN taught me last year. This is not being addressed and goes against his wishes. I'm being careful what I say to his daughter, but she also appreciates and welcomes my involvement. I've already been put in charge of certain funeral arrangements as well as contacting people. I'm known for staying calm and remembering the important details in a crisis.
Lasix is indeed given, and it is merely to allow fluid to be eliminated. It will work more or less well with kidney failure. Uncle has reached the stage where there is no cure, no good answer, and where comfort is the only goal.
Please leave decisions in the hands of that person who the POA for Health care, designated by Uncle to handle all questions. Try to question as little as possible. You cannot be there, you aren't medically trained to know what is happening, and the questioning will make what is already so difficult, more so. Trust the medical personnel. Trust the POA for health. It isn't wrong to question, but as I said it is crucial to know exactly what hospice care means, and what the basic goals are.
So sorry for this grief. Not everything can be fixed at end of life and often the decisions made are between the devil and the deep blue, without a good answer or way to go. Thank goodness for hospice, whose goal is to make a patient COMFORTABLE even if the time of death is hastened by minutes, days, or weeks. I am so sorry for this grief.
If your uncle has progressive kidney disease (caused by whatever reason) he may be facing the prospect of dialysis. You don't mention his age, but if he's very senior I don't blame anyone for wanting to avoid it. His daughter is probably reeling from the avalanche of his medical decisions and the reality that he may be dying. I'm not sure that second-guessing her or his doctors is productive at this point. Maybe ask if she wants your support and/or input at this stressful time.
I'm not sure if your cousin fully understands the mission of hospice.
Hospice is called when a doctor has determined that a patient has 6 months or less left to live, and the patient (and family, if the patient is not able to make their own medical decisions) no longer want to pursue life extending treatment. The goal of hospice is comfort care, and allowing the patient to pass pain-free and with dignity. With those goals, they will administer medicine that relieves pain, relieves anxiety, etc., even if those treatment might hasten the end.
People are not put into hospice for "financial reasons" only. It is possible, to spare your cousin pain and worry, your uncle spelled it out as such, and this is what she's relating to you. If he is swelling up with fluid, then it is entirely appropriate to administer lasix for relief.
My mother has just recently entered into hospice, and they have been incredible with her. It was a hard decision, but I'm so glad we made it. It's so much more than just a check of vitals and giving medication. They sit with her and talk with her and take what she wants into account; in a strange way it seems like the first time in a long time that she's more than just her CHF. If nothing else, I will be grateful to them for that for a long, long time.
Peace.