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?
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!
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.
My brother did not want to prolong any agony. He wanted to have a better quality of life over a longer quantity of life.
Your father chose to live a shorter amount of time to be able to die with dignity. I would do the same if I were in his shoes.
Take advantage of the social worker and clergy that are provided in hospice. They are there to assist the entire family.
Many of our patients are able to do more once coming onto care because hospice professionals are holistic in their approach. Studies have shown that hospice patients have a tendency to live longer due to the care they receive. Regardless of the time your dad has I can tell by your post that you want his life to be filled with comfort, joy and family. Hospice should help you accomplish that.
I have worked for a stellar hospice for over 7 years. It is difficult to describe the change most patients have once coming on to our service, especially if receiving care at home or in one of our hospice houses.
On a personal note, I tried desperately to have my aunt accept hospice care; ultimately, the family was too afraid of the word "hospice". Their end of life journey was less than positive and it breaks my heart to think of it.
As a complete stranger this will sound odd, I am so proud of you for choosing what is best for your dad. Prayers for you this morning. Choosing a hospice with a solid reputation will give you and your dad more quality time together. Trust yourself, you are the most important advocate your dad has.
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.
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.)
Hospice is about compassionate care and valuing the life remaining to an individual. With hospice, an individual is given treatment to give comfort and encouraged to enjoy the life that he/she has. If that are the goals for your loved one at this time in his life, the choice is more than appropriate - it is valuing him.
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