Stop Dialysis?

My father-in-law is currently in the hospital with ESLD and is also in renal failure.  He is experiencing all of the things that go along with this including hepatic encephalopathy, jaundice, fatigue, swelling in legs and abdomen, an infection they can't figure out, etc...  He has been on dialysis for his kidneys, which is the only thing keeping him alive.  His main Dr. as well as the case worker think dialysis should be stopped and he should be moved into the hospice unit at the hospital.  I don't think he has a grasp on reality, no matter what he's told he says he wants to live.  He seems to think that he'll get better and eventually get into rehab.  In reality he's getting worse, he can barely sit up in bed and usually can't hold a conversation.  His quality of life is terrible.  My wife has medical power of attorney and is probably going to be forced into a decision very soon.  He is very confused and out of it but he knows he doesn't want to die.

Does anyone have experience with stopping dialysis?  The kidney doctor would rather keep him on it, but his kidneys are not improving and I get the impression he's just trying to keep him from dying from renal failure.  It seems to me that while the dialysis may buy a little time, it won't be "good" time.  Another concern is insurance, they won't cover dialysis in hospice.  If he doesn't go to hospice they will discharge him and he has nowhere to go.  Rehab won't take him because he's too sick and his insurance won't cover a nursing home.  His home is in foreclosure, he can't got there, and we live a thousand miles away with no way to get him to our home in his condition.

Any advice would be greatly appreciated!!

Hello, Pacifico40, and welcome to the forum.  You are in a really difficult situation.  Is the dialysis recent and related to his liver failure?  If so, it means his body is shutting down and he really should not be kept alive by artificial means, including dialysis.  Does he have a Living Will?  I agree with you about quality of life.  I personally have made it clear that I wouldn't want to linger and suffer when there is no hope.

Perhaps the main doctor and caseworker, along with your wife, need to get together and make clear to your FIL his exact physical status and that there is no chance of his improving, if that is the case.  I assume there's no chance of a liver and kidney transplant at this point.  He also needs to know that Hospice would keep him comfortable.

I hope that others here will offer their input, as well.

Hugs,

Connie

pacifico 40, How old is your father-in-law and is a hepatologist involved? If so, what's his opinion of a possible recovery or transplant? If he's not a candidate for a kidney or a liver, then it might be time for him to let go. Quality of life, opposed to quantity is not a choice for me. My health care proxy knows that after 30 days (could be less if it's really bad) of intensive care, with no hope of recovery, to unplug the machines. I watched my sister waste away and die 8 years ago. I have no intention of going through that. Talk to the doctors and if need be, get a couple more opinions. I wish you luck. This is not an easy decision. Stay strong. **David**

Hello Pacifico , I just want to welcome you to healingwell and say how sorry I am that your family is going through this. Your father-in-law is in God's hands now and only he knows when he going to take him. People can only give educated guesses. But with the kidneys shutting down .....it probably won't be too long.
Your wife is going to need your support through this. She's probably on auto pilot now and just is doing what needs to be done. Putting a family member in Hospice is not a easy decision to make.........the decision alone is a heart breaker, even though you know it's the best decision for your loved one.

Thoughts and prayers............

I am glad that your FIL is now in Hospice.  They will keep him comfortable.  The confusion (talk of a black room, etc.) could be hallucinations from the morphine or the result of his kidneys shutting down.  When I worked for a nephrologist (kidney specialist), there were some people who would decide from time to time to skip their dialysis sessions.  They would become very sick and definitely would have died if they had not started them again.  Sometimes they would have to be hospitalized to get all their electrolytes back in balance.  I don't recall anyone skipping more than 2 sessions, though, in a 3-session week.  But as has been stated, it is really in God's hands now.

Our thoughts are with you and your family.

Hugs,

Connie

Just an update if anyone is interested:

Today is day 4 or 5 without dialysis. Yesterday was actually a pretty good day, he was awake and alert enough to talk with his many visitors. He reconized everyone although he is still confused about many things. He got busted by the hospice nurses yesterday morning trying to get out of bed so they moved him to a room just outside the nurse's station. He sometimes wants out of bed badly, says that he just needs to get up and moving around and he'll be fine. In reality there is no way he has the strength to get out of bed, he can barely lift his head to get a sip of water.

The nurses keep saying that he'll soon take a turn for the worse and when it happens it'll probably happen pretty quick. The times that he does realize whats going on he says he's ready to go and he can't beleive he's still here. I haven't seen him today but they gave him a sleeping pill last night and he was still asleep at 10 this morning. Not really sure what to expect today or from here on out

Well he's decided he doesn't want out of bed anymore and they're keeping an eye on him to make sure. He sleeps more now and is still out of it but sometimes he's aware and in a good mood, visiting with everyone and making jokes. When he sleeps he's only taking 5 or so breaths a minute, we're surprised every time he wakes up and is able to interact. He hasn't had dialysis in 5 days. No catheter, and he hasn't had any urine output in around a week. Really swollen legs and abdomen and very jaundiced. His legs are really restless and yesterday when he was asked if he was restless he said "someone's coming" with a big grin. Also said "I like this trip" whatever that means.

The hospice social worker came to us today and said his insurance only covers 7 days in inpatient hospice. He has nowhere else to go, so I'm not sure what they'll do in 2 days or so when that runs out. He has no money and no assets. She said something about if the Dr. says he's stable they can try to get medicaid and move him to a nursing home. Does that make sense? I didn't think people stabilized and moved out of hospice. They told us he had 2 to 4 days left last Weds, so we're all kind of surprised he's still around. I hope they don't kick him out as he has nowhere to go really. I also feel kind of bad because all of the family that came to spend time with him is going to have to start going back home to work, etc..including myself. My wife (his daughter) will stay with him as long as he's here and he has freinds that come to visit, but he's got a good group around him right now.

That's where we are now....thanks everyone for the replies and advice...

My husband has been on hospice for about 5 weeks now. They told me I would never recieve a bill for their services, they will accept whatever our insurance pays. They are a nonprofit hospice and I'm assuming that is how they can do this without charging me. I know they get a lot of private donations. They have a very lovely facility for inpatient care, so far we have gone there twice for paracentesis. Our insurance has a limit of thirty days of inpatient care coverage but they said that they are not bound by that. You might look into finding a nonprofit hospice if there is one in his area.

about the black room, when my mother in law was on morphine patches for pain from lung cancer before she died, the dose was too strong and she had hallucinations and scary dreams. Saw spiders on the wall and other things. They may need to adjust his morphine.

Better days are ahead. Stay strong.

 

Hello Pacifico40, I know this is so hard for you and your family and I pray that you all can find strength within one another. My father has been on Hospice since late December for Cirrhosis of the liver. It is such an internal struggle because each day you expect your loved one to die and feel blessed that another day is granted. But then that increases the anxiety for the next day. and so on.....

I hope you can find a good hospice solution soon. Donna