Stop Dialysis?

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pacifico40
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/10/2010 3:44 PM (GMT -7)   
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!!

deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 2/10/2010 5:02 PM (GMT -7)   

Im sorry to hear what your going through. I took care of someone who was on dialysis for 4 years but she was in her 70"s and it took a toll on her and she decided to stop dialysis and stayed home she went to sleep on the third day and went into a coma and didn't last the week. She wasn't in any visible pain but her children wanted to make sure she wasn't so the DR. put her on morphine.

My heart goes out to you and your family and my prayers are with you,

Dee Dee


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/10/2010 5:36 PM (GMT -7)   

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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Desi123
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 2/10/2010 8:12 PM (GMT -7)   
I am sorry to hear about your father-in-law. I just recently went through with this with my brother who had ESLD. Is your father-in-law on a liver transplant list? Do you know what his MELD score is?  My prayers are with you and your family, Desi

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/10/2010 10:05 PM (GMT -7)   
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**

pacifico40
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/12/2010 11:22 AM (GMT -7)   
Thanks everyone for the responces. Right after I posted this my wife called and said he had given up and was ready to stop dialysis and go to hospice. I jumped on a plane with my son and were there the next day. They moved him while she was picking us up from the airport and I guess the physical move caused some pain because when we got there he was totally out from morphine, couldn't wake him up. He was out all last night but is awake and talking today. He did say that when he woke up they had his room all painted in black and everything in there was black but he took a nap and when he woke up they had fixed that somehow.

Now he doesn't realize that he's in hospice, even though he asked to go, and wants us to bring him clothes so he can get out of the hospital. Says he just needs to get up and moving around and he'll be fine. We're waiting now for the case worker and the doctor to tell us how to handle this one. This is day 2 or 3 without dialysis, we actually weren't sure he was going to wake back up after last night. The doctors initially told us he'd last maybe 2-4 days after stopping dialysis, so we're not sure what to think right now.

Does anyone have any idea how long we're looking at? It's strange that he seems so well today aside from the confusion.

THanks again everyone, this is no fun for any of us.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/12/2010 1:53 PM (GMT -7)   
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............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 2/12/2010 4:27 PM (GMT -7)   
hello and again welcome to the forum.
I am sorry to hear that your family are going through such a sad time. all i can say is treasure these moments you have with your father in law your wife will be exhausted and needs your support right now. if only we had the answers to "how long", only god knows that one. spend as much time with him, relive some good memories if you can

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/12/2010 4:43 PM (GMT -7)   

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


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/12/2010 4:57 PM (GMT -7)   
I'm sorry to see things went downhill so quickly. Maybe that's better than being drawn out. Either way, it has to be hard for your wife. She'll need your support. No one gets over a loss like this for some time. Be well. **David**

pacifico40
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/14/2010 8:28 AM (GMT -7)   
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/14/2010 12:10 PM (GMT -7)   

Pacifico, they need to keep the rails up on his bed and also give him a "fall risk" bracelet in bright orange, so that those tending to him know he is not to get up, especially on his own.  If he is catheterized, one thing to look for is the urine bag.  When the urine turns dark and is scant, you know the end is near.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pacifico40
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/15/2010 2:20 PM (GMT -7)   
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...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/15/2010 3:18 PM (GMT -7)   

Hi, Pacifico.  If he is stable enough to be moved, he can go to a NH and receive Hospice services there.  My aunt did (she died in early Dec. '08.)  Too bad they have waited to get him Medicaid, but family needs to advise the SW to try to get him on it STAT.  Some cities have inpatient Hospice homes and there is never a fee.  I know we have at least 2 here in my city.  Ask about that, also.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


redhen
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 2/15/2010 5:37 PM (GMT -7)   
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.
 
"I will do it myself," said the little red hen. And so she did...


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/15/2010 6:06 PM (GMT -7)   

Okay, I think I'm confused.  I was thinking that he was still in the hospital but had hospice services there.  Now I'm realizing he must already be in a hospice inpatient facility.  I don't understand the SW saying he has a time limit there due to insurance, as the hospices I know of are non-profit and never refuse anyone due to lack of finances or insurance.  Pacifico, you need to check into this further.

Redhen, you are correct that morphine in high doses can cause hallucinations.  However, when people are in end-stage, they usually need the high dose to control the pain.  In this case, Pacifico's FIL doesn't seem to be upset by the hallucinations.

Pacifico, due to the change in environment, he may think he is on a trip.  He has an altered state of consciousness at this point.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DTM
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 2/15/2010 7:31 PM (GMT -7)   
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
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