My dad is on hospice care. How do I know if I made the right decision?
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?
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Please rest assured that if you select a hospice plan that is best suited for your needs they will be a blessing in your father’s end of life transitioning.
He will be kept comfortable and have access to a social worker and clergy. You will also have access to the social worker and clergy.
Your father has been approved for hospice. He will not be healed from his medical condition.
Allow him to die with dignity. At this point in time, quality is more important than quantity.
I believe that most people know when the end is near and come to accept it gracefully. No one wishes to suffer more than they have to.
We used hospice services for my brother near the end of his life. All of his needs were met beautifully and he died peacefully without pain.
Wishing you and your father peace during his transition.
Your only posts on the forum are complaining and misinforming people about hospice. Troll elsewhere please.
As hard and emotional this choice was, know you made the right one. MIL lived in my home with hospice care and did so for almost 2 years. They are there to help our loved ones live the best quality of life they can. They do not look for a cure, but do maintain needed medication ie heart meds,etc. They also assist with pain management, bathing, weekly nurse visits, which can turn into daily visits when the situation calls for it. I am sorry to hear about your dad and what all of you are going through. He made the choice to enter hospice care, support this, it'll make it easier on him. Unfortunately you said that the only cure for him is a transplant, a couple questions for you to think about, would he survive anesthesia and complex surgery, would he be able to deal with the pain afterwards, would he be able to follow dietary and medicine requirements after the transplant. It's easy to second guess what the right decision is for his best interest. Love him, talk with him, spend precious time laughing and celebrating his life. Prayers for your dad and your family.
So long as your dad is considered cognitively capable of making this decision, it IS his decision to make and he made it. The right decision is to abide by his decision.
"I feel like either way I am sealing his fate." YOU are not sealing his fate. Either way the most likely outcome will be the same. The difference is quality of life, not quantity. As you note, you are torn between allowing nature to take it's course with comfort care or sending him off to a NH, where he might be miserable and where you might not be able to visit with him.
Allow him to make that decision, as he has already. He CAN change his mind, but again, it needs to be his decision unless he isn't cognitively capable. It sounds like he understands the difference. None of us want to lose any of our loved ones, but there really isn't anything we can do to change that. We can only try to make their time left comfortable and to be there for them.
"...the doctor said yes because liver failure is terminal unless you get a transplant."
No "holistic" anything is going to benefit this man. Based on the profile and lookup of his other "condition", the liver failure is due to alcohol abuse. Again, not a judgment of the dad or his decisions, just pointing out that this is NOT a DIY situation. He is not likely going to qualify for a transplant, even if one was available and compatible.
Mom was discharged, I simply reinstated her hospice by signing a piece of paper and hospice provided a pump, tubing, and tube feeds...and diapers and dressings and most other supplies.
Mom died of other natural causes, age 90, due to kidney disease -- she was an insulin-dependent diabetic for years and years and years. Her Alzheimer's did not kill her at all. I battled Alzheimer's for 15 years. I never thought other causes would kill her. I always thought her Alzheimer's would have done it.
Now with liver failure, a feeding tube may not a great idea because he probably won't be able to digest it DEPENDING on the degree of liver damage. Once he turns yellow, his stools will become chalky because the bilirubin will no longer be excreted in feces (which makes it brown), but through the kidneys. Bilirubin will clog the kidney tubules and cause kidney failure and death. You will know this is happening when his urine turns more orange color AND urine output decreases considerably. Death will be imminent afterward--within a week.
You are NOT sealing his fate. Natural causes--nobody is going to live forever.
My mom never went in a nursing home, but caring for her was very hard work -- the last nearly 6 years was 100% supervision and in the end I had to diaper her and even make certain she has a bowel movement scheduled every Tues, Thursdays and Sundays because if she did not go, the 4th day she had impaction. that is a living nightmare to go through. But mom was very comfortable and she was surrounded with love and her own surroundings. I do NOT advise people to do home care UNLESS you absolutely know what you are doing. Mom's care and medical management was very challenging to put it mildly.
Respect it.
I had the same thing but with my Mom.
I knew her wishes of a DNR unless there was a chance she'd get better.
My story is long, so I will get to where I HOPE I can help you.
If there is a DNR HONOR it.
As difficult as it is, you have to love your Dad more than yourself.
Ask yourself what quality of life will he have if left on machines?
Was that a wish of his to be kept alive this way?
Depending on your situation would putting him on machines improve his condition for him or just ease your anguish?
You have to think of him first.
I followed my Mom DNR wish, my hand shook so bad, I pulled it back twice, wondering if there was any chance she'd get better, was I doing the right thing, but I knew in my heart she wouldn't wanted to live longer in her state & I loved her too much for that to be her quality of life, she deserved better than that.
I thought of her & what SHE wanted, took a deep breath & then I signed.
I miss my Mom terribly, she was my best friend, we did everything together but I know in my heart it was what she wanted & I kept to my word that I would do her wishes.
I don't have any regrets because I love her & know as hard as it was this was the best for her.
Hospice means turning your father's over to the Hospice medical team which supervises comfort care at home.
You (or family or hired care givers) would be doing the daily, physical, hands-on care.
Most Hospice services offer a "Hospice House" of some kind for brief respite stays of 1 to 4 or 5 days. You pay out of pocket for the "boarding" portion of these stays; usually about $300/day.
I read the responses to this question and found much solace in them.
My brother is being assessed today for hospice care. He has Stage 4 metastatic lung cancer which has spread to his brain. He has become quite weak and the doctor said there has been no improvement recently. He has been in the hospital for over a week. They've been conducting a multitude of tests. The family has been discussing what next, agonizing over this, as he is confused much of the time and does not now have the capacity to make his own decisions. I had discussed with the doctor regarding my not wanting to "pull the plug" on choosing hospice over radiation and chemotherapy. (That would possibly extend his life at best for 12-18 months.) He told me flat out that it is not me making the decision, it is the cancer. Reality check.
Reading the other responses to your question, I feel better knowing the experiences others have had. I see that not necessarily "dooming" him, to have him be assessed for what level of hospice he may need.
I wish you the best in what you are experiencing. Your father's quality of life may indeed be better than it would have without the support of hospice.
I love your doctor's statement.
Take care.
My dad was OBVIOUSLY dying from as massive stroke and Cleveland Clinic kept wanting to do crazy things to him (I am SO SO SORRY I let them for as long as they did - they gave him an excruciating spinal tap, for NO reason, in my opinion.) WE FINALY said ENOUGH! and sent him to hospice, where he didn't even live 12 hours. I SO regret not doing it sooner.
Anyhow, keeping someone alive is NOT living, I guess is my point.
I am very sorry that you are going through this - sending hugs XOXO
I suspect she had another stroke the day before she passed. The nurse said they had gotten her up and dressed, in the wheelchair. Later morning she was slumped over and not responding well to anyone. At least it was fairly quick and she didn't really seem to suffer.
I really questioned what exactly they were going to do for her if they did take her for "testing." If she were much younger, no dementia, etc, maybe they could help, but geez...
the best option would be for him to stay in his own home or move in with you, using Caregiver help, where he would continue to feel Loved, Safe and happy.
Seniir Homes may look nice and tell you what you want to hear but most are Hell.
They are understaffed.
You have No rights.
They over medicate, especially if your looked at like a problem patient.
If you can't feed yourself, you'll go hungry.
Lover ones in Senior Homes lose their Will to live.
If your father is of sound mind, let him make the decision himself, as he is the one going thru treatment to stay alive and knows if he wants to continue the treatments or not.
But like I mentioned earlier, if he had another option like living with you or in his own home, he would jump at the chance and choose that option.
2 yrs of life is a long time to give up unless you are always in excruciating pain.
Lots of people take treatments for Liver failure.
Praters for your Dad.
“most are hell” “they are understaffed” “you have no rights” “they overmedicate” “if you can’t feed yourself you’ll go hungry” “will lose their will to live” All are statements of stereotypes and generalizations, not provable, not true, and cruel to families who are trying to do their best for those they love while in impossible situations. I can’t imagine if I’d had this site when my mother was in such an unimaginable circumstance, and if I came here for support and encouragement and instead got hit with that. Especially when I knew the conditions of her nursing home, where she was cared for with compassion and skill. The rude cruelty needs to end
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.
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.
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.
So, yeah, I feel for you. But if your dad stated his wishes, they should be respected. Sending you hugs. All we can do is our best. It sounds like you are doing a great job, even if it's a hard one.