I asked the doctor today if my dad would qualify for hospice since I'm making his medical decisions now, and the doctor said yes because liver failure is terminal unless you get a transplant. I asked my dad if he wanted to go to a nursing home where he would continue treatment or if he wanted to go to a hospice home where he would get pain management and end of life care even if it may be several months. He agreed on the hospice. Half of me thinks I should fight to get him in a nursing home where he can continue to live, but the other half of me can't stand the idea of the rest of his life being in a place he hates fighting an organ failure no one can fix, where he'd eat food he hates, and where his whole life will consist of draining fluid from his legs and abdomen, bland low sodium food, and limited visitation during covid.
I feel like either way I am sealing his fate. If he goes to a nursing home, he could live 2 more years, but at what cost? If he goes to hospice, it'll be less than that, but he'll be more comfortable. But I want my daddy to live.
I am so sad and so lost. I want him to be out of misery, but does that really mean I need to make a decision where he may die sooner than later? Is that right?
Don't bash yourself up for the choice of allowing your LO to not suffer. Love isn't always easy choices, but love is knowing when to let go.
He has commented that watching someone die from liver failure is pretty sad. The EOL hospice is a complete godsend. He cannot bear to see his patients in pain, and although he cannot control what they choose, I know he is very good to educate both patient and family about the possibilities. He doesn't sugarcoat the awfulness of how sick they very likely will get.
I've had 2 LO's pass on hospice that THEY chose. Calm, peaceful and not fraught with agonizing pain and anxiety.
Honor your dad's wishes and every time you start to think you did the wrong thing--remind yourself that HE is in control and let that comfort you.
I am sorry for what you are going through. (My Dh had liver cancer and then a liver transplant, and 14 years later, he is doing OK. Someday, it will be me/him deciding it's time for Hospice. I hope I can be brave and wise.)
My mom chose hospice after battling CHF for a long time. Her last 2 years were a revolving door of hospital, rehab, home, hospital, rehab, home, etc. It got to the point I was keeping notes in my phone calendar, because when I would get asked "when was the last time she was hospitalized" they all seemed to run together. And she was miserable at the hospital...they didn't want her doing anything, including getting up on her own to go the the bathroom, so every time she came home she was worse off physically than before she went in.
She made the decision to go into hospice. It was an easier decision for her to accept than for me. But from the moment hospice entered the picture, as others have said, it was like a weight being taken off our shoulders.
What I found was the nicest thing about hospice was the amount of time they spent with her when they came to check on her. They would come in, do her examination, and talk to her and WITH her...it wasn't "revolving door" medicine. They put the power of making the decisions about her treatment in her hands, which she so very much appreciated.
Hospice is not about pulling a shroud over your dad - it's about giving him the best quality of life in the time he has left. I am so grateful to hospice for the care they gave to my mom, especially at the very end.
Peace to you and your dad through the journey.
I think you should educate yourself a little more on hospice care. It's a wonderful option, and it most assuredly does not "seal his fate," as he can be removed from it at any time and receive more advanced medical care if he decides he wants it. The important thing to remember is that hospice is all about preserving quality of life, and endless futile medical treatments do not contribute to quality of life. My dad had liver cancer, so he was going through the same thing your dad was, and once hospice came on board an enormous weight was lifted from all of us. They're available 24/7, they really care to be helpful not only to the patient but to the family, too, and it was just a relief to have someone who was 100% on our side.
When my dad had Stage 4 Pancreatic Cancer in 2004, I knew he wouldn't live long. He surprised me when he told the Oncologist that he was willing to do the chemotherapy. We made his first appointment for the following week.
I went home and could not relax. I knew my dad very well and transporting him there and to the 2nd floor no less, would not be easy. I knew in my heart he wouldn't be able to handle it and it was not going to be good for him or my mom - he was 82 and she was 79.
I called my mom a few hours later and told her I didn't think he should go through all of that when the Oncologist already told us it may only help him live a few more weeks to a month at best.
I went over to my parent's house the next day with my hospice packet that I requested and told my dad I didn't want him to suffer needlessly. He agreed on the spot to allow hospice to care for him in their home. I called and made arrangements for the case manager to come, assess him and signed him up immediately. They were so wonderful to him and he passed away peacefully three weeks later.
Like "Daughterof1930" said - "you asked him about hospice and he chose it." I hope you will be comfortable with "his" choice/decision. I know you want your daddy to live. I didn't want my dad to die either but I wouldn't trade "our" collective decision for anything and have no regrets. My husband, myself and my mom were all surrounding him along with the hospice nurse and a hospice volunteer - I couldn't have asked for more.
Your dad's passing away is in God's hands -
"You have decided the length of our lives. You know how many months we will live, and we are not given a minute longer." Job 14:5 NLT
Rest in that and take comfort that all is in alignment with God's plan.
I'll be praying for you and your dad - that you will have peace in your heart!
Tell Hospice your feelings. They will help you. Tell them you don't want your Dad over medicated unless he truly needs pain relief and relief of anxiety. If that is the case then your father's death will not be hastened. They will protect him from pain, anxiety, air hunger, discomfort. They are not there to kill him. Please talk with them.
Additionally, your father has made HIS wishes known, and for that you are fortunate. Respect his decision and move forward with his wishes intact.
Wishing you the best of luck accepting your dad's fate here. It's tough, I know.......but not something you have control over. Sending you a hug and a prayer for peace.
it sounds like your dad has made his decision. It’s up to you to do the loving but difficult thing of supporting and honoring his wishes. I have a friend who was in a similar situation years ago. She didn’t have a medical background or anyone in her corner to let her know that there was no getting better for her mom. It haunts her to this day that she allowed the facility put her mother through testing and therapies which caused her discomfort. This is a good time to request your doctor to have palliative care or hospice get involved. They will support both you and your dad, and I think they will help bring you peace of mind.