When is it time for hospice with end stage liver disease?

My husband has Hep-C and Cirrhosis,  is a recovering alcoholic and has not drank since his last varacie bleed in March 2009.  He has had a total of 3 varacie bleeds including the first one 2 years ago.   Since March of this year, he has been in the hospital 3 times, once with phemonia.   He has been home for 3 weeks now and each week I see him get worse.  He is very weak, confused, speech problems, short term memory loss.   Some days are better than others, but overall, each of the last weeks has shown him to be worse than the previous week.   He is unable to stay by himself at all.  We have a great family and support system, so someone is with him every day.   He has no pain.  

How did you know it was time for hospice?  And, if someone has used hospice for someone with liver failure, how did they help?   I have a great family and my husband is greatly loved and cared for.  We pray he gets better, but I am not seeing it.   How do I know what is best for him?  Or is keeping him here with family the best I can do to support him?

[mikesimon]

Your questions are very difficult to even ponder let alone answer.
I think any decision about Hospice should be made in consultation with his physician. The doctor should have some idea of what to expect in that regard.
My experience with Hospice is that they are excellent in these types of situations. I have never personally been under their care but the families I know who have dealt with Hospice have spoken very highly about the care and compassion their loved ones received.
There are treatments that might be able to help your Husband with his confusion. If his doctor is not trying to manage this problem you need to speak with his doctor. If his doctor is not a gastroenterologist, or better, a hepatologist I advise you to get him seen by one of those specialists - preferably a hepatologist if one is available in your area. They are generally found at large teaching hospitals and university related hospitals.
Liver transplantation is one option for people in his condition. The trouble he would have is that almost all transplant centers require one year of absolute abstention from alcohol to even be considered as a candidate. He simply cannot drink any alcohol - not one drop if he has any hope at all.
I don't know your Husband's condition or what his life expectancy might be at this stage. I know you want him to be comfortable and I think that is essential. I suppose I want to say don't give up on him but I am an eternal optimist. I don't even know his
age and I am thinking along these lines. If you have done everything you can then speak with a reputable specialist and ask them about Hospice. If you think there are additional steps you could take on his behalf then push yourself and the doctors too. We really do need to advocate for ourselves and our loved ones.
I wish you good luck and peace through this difficult time.
Mike

[HKelly]

Thanks for your input.   His doctor is a liver specialist and is GREAT for both him and me.  He, as I, have not given up all hope, but Dr. does say that hospice would be all left if he does not show signs of improvement in the coming months.   Our family is so supportive, and my husband is still able to feed himself (although he eats seldom and little) and we can still get him to the bathroom.  I really want to keep him at home unless it is a situation we cannot handle.  So far, we can handle, although difficult.  It is such a roller coaster.  Some days are better than others and some days are just horrible.  Sometimes I think he is getting better and the next day he can't walk.   I appreciate the input on hospice and the kind and encouraging words.   You are correct in that he does not qualify to even be evaluated for a liver transplant at this time.    BTW, he is only 52.  

[mikesimon]

I have been pretty sick myself and I did have a liver transplant in June of 2000. My underlying disease was also Hepatitis C but I had not had a drink since 1994 or early 1995 so alcohol wasn't an issue. I was 50 at the time of my surgery.
Since I have been really sick I have thought a lot about dying. Maybe the best way to describe my feelings is to tell you how I look at obituaries. I only look at them on the weekends but first I look to see if I know the decedent. Then I look at the age and then I look to see where the person died. If it says that the decedent died at home I feel much better. But I am cognizant and able to comprehend what's going on. If I weren't then it might not matter where I died. But, from here - I want to die at home.
I really feel for you. I have always maintained that it's harder on the loved one/care giver than it is on the patient. I remember going into transplant surgery. I wasn't scared in the least. I didn't know about hepatitis recurrence post transplant so I believed that I would either be cured or I would die. Death comes to us all so death didn't scare me at all. But it sure scared my loved ones as they waited anxiously in the waiting room to see how it went. Me - I was unconscious so I was fine with it. And then the after care fell on them while I endured some pain and some setbacks and sickness but they did all of the work and had to tolerate my huge mood swings..
So, well I can try to understand what you're dealing with I really haven't been there. I have been the patient and I know that's a lot easier despite the sickness we endure.
I respect you tremendously for your honesty, your love and your courage. And I will hope that things improve for you and that you find your way through these difficult times.
Be well,
Mike

[HKelly]

Perhaps you or others can let me know if these are common symptons and if you have seen others improve with these, without a transplant?

My husband has cirrhohis and Hep-C with end stage liver disease.   He has been home from the hospital for 3 weeks and I see greater weakness each week, but he has a really good attitude.

1)  Legs won't move--   He sometimes (often) has trouble getting his legs to move.  He always uses a walker, but sometimes his legs just won't move and I can see his level of concentration,  but nothing happens.   When this occurs, I have to get the wheelchair.  Why won't his legs move?  

2) Easily distracted; unable to focus -- Also, he has great difficulty focusing on any single task, no matter how small.  It takes about 30 minutes to get him from the house to the car (after he is dressed), because he can't focus on getting to the car.  He sees a cup and it needs to go to the sink.  He sees paper and needs to pick it up.  He wants a different pair of sunglasses.   A plant needs to be watered.  Just about anything he sees distracts him.    

3) Slow -- He is very, very slow.  A lot of this is because of his distraction, but sometimes, it is like he is thinking of what he needs to do to take a bite, take the next step.   He sometimes pauses for several minutes before he does the thing we would do without thinking.  It takes about 3 - 5 minutes to get him into or out of the car once he is at the door of it as he is thinking (I guess).  He just stands there and if I try to encourage him, he says I am rushing him.  

This is in continued hope for better understanding of his situation and our future.  

[mikesimon]

I thought I replied yesterday but apparently it didn't post.
I really don't have any answers.
I think the confusion, lapses, distraction etc are due to encephalopathy which is associated with cirrhosis. There are ways to manage and/or improve the mental state and I would have thought your liver specialist spoke to you about it.
I do not know why he can't move his legs. I wish I knew more.
Mike

[HKelly]

You are correct in that it is encephalopathy and we are doing many things to help this.     I guess my real question is, has anyone seen someone get back to "normal" after their symptoms with encephalopahy are as described for my husband?   Is there someone who has seen good improvement and/recovery at this point in the illness? This would have to be without a liver transplant, as he does not qualify.  Thanks.

[mikesimon]

I wish I could be more encouraging but in the Hepatitis C/cirrhosis setting I have not seen significant improvement.
Mike

[baby341]

can i ask you if how much i need to prepare for liver transplant?

[mikesimon]

Tell me about yourself. Are you listed at a transplant center? MELD score? Underlying disease? Liver condition - stage/grade?
Mike

[baby341]

i!m not listed in transplant center.first of all my condition isnot so weak i!m just so scared about my liver cirrhosis my daughter think  that maybe if i will go in liver transplant my condition getting  better.tommorow i will go to my doctor to show the result of my blood tests i dont know what stage is my disease.

[mikesimon]

At this point I don't think you need to prepare for a liver transplant. I think you should wait until you have a clearer picture of where you are and what options you have.
Good luck,
Mike

[Jody515]

I just wanted you to know that my brother also had end stage liver & never went into hospice. He stayed home until about the last 4 days of his life & then had to go into the hospital.  
We all joined in & helped & it really wasn't that bad.
Prayers are with you & yours, take care.
Jody

[baby341]

today i had to meet my doctor to read my blood tests.and i ask him if advisable for me to under go to liver transplant. he said that here in the phillipines the liver transplant is not fully develop and  beside its very expensive. for me cause i am not rich.after all he said that my liver cirrhocis cannot at risk for now.he said that all i have to do is always exercise eat  more on vegetable fish and fruits avoid salty foods. and take liver vitamins everyday. by the way i like to thank you for responding my questions. i hope you help more liver patient by giving advices. thank you again and god bless you and your family always.

[mikesimon]

That's really good news Baby.
I wish you a great life - with all of your own parts too.
Liver transplant is the last resort so, if you can keep your own liver, that's the best way. Eat healthy, avoid alcohol and be kind to your body.
Be well,
Mike

[ktdfcsc2010]

I am a Hospice nurse with a patient that has end stage cirrhosis.  She has so much edema (swelling) she is about 100 ponds over what she should be.  I have made her more comfortable but I am worried.  The husband is so supportive and they are so sweet.
I want to do all I can for her and her spouse.  Any advise from anyone especially medical ppl. I appreciate every one's advise that has dealt with this medical  or non.  

[nati555]

My husband has been denied a liver transplant, he has portal vein thrombosis in addition to the cirrhosis. He has been evaluated a second time now and the risks outweigh the benefits. He has all the symptoms, confusion, ascites, weakness, edema and is now starting with pretty severe pain. The doctor mentioned hospice, but my husband is not ready, he thinks he will get better. I know its the confusion, so I am waiting for the right moment to discuss it with him. I don't have a large family, and I am afraid I wont be alble to take care of him alone, he is a large man (6.9) . It helps writing about it and hearing other families write about their experience with patients that have this disease. My husbands last drink was in 1986, and he does not have hep C, he has been healthy for 25 years, and 6-7 month ago the bomb dropped.