When is it time for hospice with End Stage Liver Disease?

[HKelly]

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?

[Judy246]

Hi HKelly,

When he no longer has the quality of life that he deserves that is the time for hospice and it sounds as if he should have been in hospice by now. If he is no longer capable of you feeding himself or needs assistance going to the bathroom (soiling himself, or having to change a depend, etc) it's time. bMy mother died in July and I am caretaker for my 84 yr. old father.  This is  very difficult decision for the entire family, because it's a decision we never wanted to find ourselves in, but you must do what is best for him and your family at this point, where he can be medically treated and treated with respect and dignity. We never want to put our parents who cared for us to be taken care of by someone (strangers) we are not familiar with. It's a difficult time, but the stress on a family member is also hugh.

Hospice has the medical staff, facility 24 hours and if you have not yet decided on a facility, please select a facility carefully. Also, ask  your doctor what he would recommend, ask friends that have experience hospice, which facility they would recommend, but make sure to do the research on what is best for your husband and family.  You are in my thoughts and prayers.

[Beachwalker33]

I was my Mom's caretaker,and so happy I could be.When she got the Ovarian cancer diagnosis I just knew I would help her recover,we hoped and prayed she would.I told her that I had a feeling that the hospital would tell her soon to go home and have Hospice come in,she refused.Anyway if you can administer meds,such as can you get a Morphine pump?which he will need,when the time comes.My Mom passed in the hospital,I was in charge of everything,when she couldn't make her own decisions.I just did exactly what she wanted every step of the way including barely leaving her bedside.The last thing we want is to watch our loved one's suffer...And it sounds like Judy said what is right,Is there quality of life? The bottom line is very few people will take care of your husband like you.If he didn't tell you what he wanted, do what you feel is best.I pray that God helps you make the right choice.Its tough,believe me I know.Big hug to you and a gentle one to your husband! God Bless,Jen

[HKelly]

Thanks to you and Judy246.   This is helping me sort this out.   I really want to keep him at home and for now, he has no pain.  We have a supportive family and help.   The right thing to assess is "quality of life".   His is not to the point that I want or need to assess hospice.  Thank you.

[Judy246]

If his quality of life at home is comfortable and you are able to care for him without it being beyond what you can handle, then care for him in his loving home. There is no place like home and I would have felt blessed if my mom would have passed at home, but it was not meant to be. God bless and keep us posted on how  you and your father are coming along...Judy

[RNRita]

Hi.  I am a hospice nurse.   A lot of people have the wrong impression of hospice. It is not something you wait for until someone is in the final days or weeks.  It is extra help in the final 6 months and it is wonderful.  I wish I would have been more aware when my mother passed.  It doesn't mean you HAVE to die within a certain period of time. We have people on service for 2 years!  They get such great care that sometimes they stabilize and come off service for a bit.  I can tell you that your husband meets the criteria for hospice with the variceal bleeds, hospitalizations, and overall quality of life.  It is comfort care.  It is passing with peace and dignity.  Families I have seen have been very happy with the hospice experience.  It also provides support and bereavement for the family.  

[Beachwalker33]

I have a Hospice manual,if you like I can make copies of the entire thing and mail it to you.A friend of my Fiance's loaned it to me.I can ask him if I can send it to you.Just let me know.I feel for you and will do everything I can to make this easier for you! God Bless,Jen

[Prospero73]

I would reiterate Beachwalker's comment.  My brother-in-law has cancer of the liver and pancreas and a long list of other conditions, and he's been on hospice for nearly a year, and this has been very helpful.  A couple of times he's rallied temporarily and gone off hospice, then back on again.  His father and mother both passed away at home during the last 10 years, and in both cases hospice care was a great blessing for the family members who were caring for them in their last months.

[mommy52]

As Rita, I too am a Hospice Nurse. Services can be provided wherever the patient calls home. I have discharged ones when their condition improved. Hospice is for the family as well as the patient. I know that I helped alleviate many concerns and worries for many families. Even though I was told to spend on 30 mins with each pt., I spent as much time as it took to assure all the family's and the patients needs were met. We worked as a team. When the time for passing came, the family had someone there for them other than their family members that they felt knew them and truly cared about them and the things they were dealing with. I sure wish I had known about Hospice the way I do now. It would have helped so much when my son passed for the 16 and12 year old boys as well as myself and my husband. My prayers are with and for you and your husband. Even though someone is with him at all times, Hospice team members have made a difference when I have had a pt. to pass. Blessings to you and your family.

[grammageorge]

I had hospice for my husband in his final days (cancer) in our home. My children and I converted our den into a hospital room of sorts.  Hospice provided the hospital bed, all medications, table, walker, oxygen, etc.  I had 2 home aides come in everyday to wash him and feed him when he was able to eat, change the bedding, etc. Both were very caring and loving to me and my family.  A nurse also came everyday at assess his condition. I could not have provided what he needed on my own.  When he passed (less than 2 weeks ago) a hospice nurse came at 4 a.m. on a Sunday morning to pronounce him and deal with the funeral home to pick up the body, etc.  All these people were a blessing to me and my family.  They also provide a social worker and breavement counselling if needed. After the funeral, they called to check how we were doing and if we needed anything. I highly reccommend hospice.  They are saints.