My dad is on hospice care. How do I know if I made the right decision?

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My dad is on hospice care. How do I know if I made the right decision?

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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?

Care Decisions Caregiver Support End of Life

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There’s nothing to indicate in what you wrote that you are sealing your dad’s fate. You asked him about hospice and he chose it. This is where my family was with my dad with past summer. He had end stage CHF and was so very tired of the merry go round of treatment that wasn’t working anyway. His doctor suggested we talk to him about hospice care and my dad agreed to it. He knew what the future looked like and that there are fates worse than death. My dad was kept comfortable and out of pain by hospice. He left this world exactly as he wished. It made me beyond sad, but I also appreciate his wisdom in deciding it was time to stop pursuing treatment that wasn’t working and only making him miserable. Respect your dad’s choice in this, know it can always be undone if he chooses, and have peace knowing he’ll be cared for in a compassionate way. I wish you both peace

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Hello,
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.

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Nobody can prevent a loved one from dying. You have two unsavory choices, so you pick the lesser of the two evils here. Your father is dying and you can't prevent it, so you are choosing to make his remaining days as comfortable as possible. Which is what I chose with my own father, when he was dying of a brain tumor.

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.

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Your father has made his decision to got to the hospice facility, so you need to honor and respect that decision. Just because he's going under hospices care now, doesn't mean that he will die any sooner than if he went to the nursing home. My husband was under hospice care in our home for 22 months, before he died in Sept. 2020, so as you can see someone can live longer than one would think while under their care. So just enjoy whatever time you have left with him, and remember that only God knows when He will call your father home, so regardless of the decisions being made, He has the final say. May God give you His comfort and peace in the days and months ahead.

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As a nurse who has often witnessed the prolong torment of my patients because of family inability to let go long after the patient was ready, I so believe that you have honored your Dad's decision, and so thankful to you that you have. Our wanting life to go on for someone so we do not have to lose them is a normal feeling, but as a nurse, losing those I loved, I was often only thankful for their lives with me, for the fact I will never feel them gone from me, and for the fact they need no longer suffer to stay with me, and I need not fear for their pain anymore.
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.

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Dear "aj6044,"

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!

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A month ago I put Mom on Palliatative care, and today we decided to move to Hospice as she has had a sharp decline,, and I know how hard this is. They are coming tomorrow to assess her, and I have taken off work until Fri to get things set up and possibly Home Care for nights so we can get some sleep. They are offering alot of help, and med management for her pain, anxiety and breathing issues. Last night hubs and I had a long talk, something had to change and with COVID placement would be awful, and she is with it enough to think we would be putting her out. But she knows she is failing fast, and wants to be comfortable and pass here at home if possible. It is hard watching her struggle to breath, refuse to go the hospital, and wander and have hallucinations. It was really sort of freeing to be able to get the help, and no judgements, just knowing we will be making her comfortable, and giving her permission to go. Hospice was wonderful with my Dad,, I know I am making the right decision for all of us.

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Pam, I’ve often admired your closeness and care for your mom. Know this is so hard for you, but also the best path, wishing you all peace

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Your dad could very possibly have both scenarios. My mother is in a nursing home, and I put her on hospice care this past weekend. She will still be cared for by the same caregivers she's accustomed to and be able to participate in the activities there, but she'll also have a second set of eyes on her and the hospice nurse will manage any pain she may have as her time draws closer.

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.

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AJ, if you're honoring your dad's wishes, then you're making the right decision.

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.

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My SIL is a hepatologist (liver doctor) and he lost 3 patients the week of Thanksgiving to liver failure. All 3 were fairly elderly and one had cancer--so even as he worked with 2 of the 3 to possibly get a liver transplant--the chances of that, when you are over 70, and in poor health--pretty much zero.

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.)

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You are in a very difficult situation, however, IMHO I think hospice is the best option. His not suffering should be the top priority. Quality of life is already impaired due to his kidney failure. I am sure had to make a decision to pull the plug on a LO. It was the most difficult decision to make, but sometimes it is for the best.
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.

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My grandpa suffered a massive heart attack Sept 2019. He was 88 at the time. They did lifesaving measures for 45 minutes before his heart stayed beating on its own (in a coma, with an IV right to his artery). They didn't think he would make it through the night. He ended up coming out of the coma 3 days later and discharged from the hospital 2 weeks later. In a follow-up appointment with his doctors, he said no more lifesaving measures. He wanted to do what he could to maintain with medicines. No heart surgeries, etc. In Feb 2020, his health had deteriorated so badly that they put him on "comfort care" and we lost him a week later. I had medical PoA and could have pushed to postpone his life, but I followed his wishes and I swear, the last day he could talk, I felt like he wanted to change his mind. Still breaks my heart, but his quality of life wasn't the greatest. His wife has advanced dementia, he couldn't hear, he was legally blind.

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.

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You made the correct choice. My brother was kept comfortable during his end of life hospice care. The nurses were wonderful and cared for all of his needs.

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.

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Your dad has made his wishes clear and you have the info needed to help your make that decision from doctors etc. help him enjoy the time he Is here. Plus what about another lockdown etc. I think you made a good decision I pray for some peace and confirmation for you

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Your choice to enroll your dad in hospice care is a wonderful decision and you can feel proud that you are putting his needs above all else. What a blessing it will be for him to be at home or in the care of staff at a hospice house. Reputable hospices work hard to ensure that the end-of-life experience for the patient and their loved ones is filled with comfort, quality and dignity.

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.

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Hospice is not about "giving up." Hospice does not seek to heal health problems that are incurable, so there is no need to consider "fighting for" a cure. Hospice is also not about abandoning a person to his/her fate. Most times hospice is deemed appropriate for an individual that is suffering and their health problem will lead to demise in 6-12 months (depends on the state/province and health insurance definitions).

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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i had the same dilemma 2.5 yrs ago with my almost 90 yr old father. he was in rehab for a fractured hip that was surgically repaired. he was doing well and ready to come home but his catheter became infected with mrsa and it went to his heart ie endocarditis. he was transferred back to hospital and was delirious, anxious, in physical and mental pain etc etc....he stopped eating and drinking. they said his only hope would be a feeding tube, catheter and 8 weeks of iv antibiotics but in a nursing home....i knew the quality of care in nursing home would have been terrible and more than likely he would never regain the strength to walk again since he would be bedridden for over 2 months......he would hate the feeding tube, etc plus he needed to be turned every 2 hours due to bedsore.....i faught so hard for him to come home after his hip was repaired and he faught hard in rehab for 6 weeks - we were seeing light at the end of the tunnel and then it all fell apart.......i made the hospice decision and he died in 3 days while still in hospital.....i have gone over this decision a thousand times in my mind - thinking i did the wrong thing.....its very very hard yet having them suffer is also horrible...god bless you

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Bith choices suck!
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.

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He could continue to feel safe, loved, and happy being cared for in a hospice facility. Shockingly, it’s been known to happen.
“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

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I don't see where you have any other choice. If it were you, what would YOU want? I would not want to languish with no quality of life. Hospice is the ONLY decision, in my humble opinion. I am very sorry that you are going through this.
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

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Sad that they did that to your dad (and you.) My mother was in MC when she had the first stroke (just before Labor Day 2020) and was 97. She refused transport and they tried to get me to override. To what end? Testing? to do what for her? I said no absolutely to hospitalization, as I know she wouldn't like it or do well there (not with dementia!) I finally told the EMT if YOU can convince her to go and if THEY can get through testing, knock yourself out. I also told him that even if I override her wishes and say take her, she'll go kicking and screaming! WHY put her through that? She refused, so no transport. The nurse did get OT/PT to come in to help with feeding herself and pivoting (she was already in a wheelchair, but the stroked impacted her dominant side.)

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...

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First and foremost,God has brought your father there to this point in his life with this sad diagnosis.You sound like ,an amazing son ,that is very caring and is willing to give your father some Choices, in the end Stage of his life. You both sound lucky to have each other. HOSPICE is a great choice ,you are fighting for your dad,for his comfort, his dignity,and his right to die with as much peace as possible, Please take care.

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This is so hard. My dad had so many illnesses, plus Lewy body Disease. He contracted Sepsis and Covid. The hospitalist stated my dad was a very sick man and recommended hospice care. I had so many thoughts running through my mind. However, a few years ago, my dad said, "No surgeries, no blood, no anything...just let me go...". He also had a DNR in place. At one point, my dad was too ill to be transported to the hospice facility. However, he was eventually moved. I have to say, I still continue to be impressed with the care, love commitment and genuine kindness hospice showed my dad and to me. I was able to have a final "window" visit with him and I was able to say to tell him the things I wanted to say. This opportunity brings me such peace. If anything, he was so well cared for during his final days. I want to eventually become a a hospice volunteer. May God's wisdom and love envelope you!

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Oh please do become a hospice volunteer! It is a very rewarding experience and you are helping others by easing the stress of family caregivers! I love being a hospice volunteer(now on hold due to COVID precautions)

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Your dad has chosen quality of life over length of life. If it were me I would respect his wishes. I know you will miss your dad. Losing a parent is so very hard, but you don't want him in pain and you don't want his dying to be dragged out. Let hospice make him comfortable and make the most of what time he has left.

Take care.

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Aj6044, your father is the one who requested/agreed on Hospice. I know it's tough to accept, but it is his wish and you would be very supportive in honoring that.
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.

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bpositive, my heart goes out to you, my beloved Daddy died from metastatic lung cancer in 1974 before Hospice was in our area. It was awful. We did the best we could to keep him pain free, but I wish I had the choice of Hospice. A couple of years ago one of my best friends died of the same cancer, his wife had Hospice in and what a difference it made. My Daddy was only 61 and my friend was 57. Way too young.

I love your doctor's statement.

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"Going to Hospice" does not usually involve going to a "Hospice House.."

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.

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Taking your dementia patient to a nursing home or hospice home,,,,,,,going to help their mental situation being dumped into unknown surroundings? We as caregivers need respite care, but not at the expense of creating additional confusion by placing a dementia patient outside of there normal surroundings......amazing that the people that profess help would consider this a benefit for a dementia's person's health. No, to provide a caregiver the time to recover, they should provide coverage for the patient to remain in their own element......at home.

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If your loved one meets hospice accept, it can help you deal with many unknown problems as they occur. Accepting hospice doesn't mean your LO passing is imminent and they can graduate or stay on hospice longer than 6 months.

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It's heart wrenching & I understand how you are feeling.
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.

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Hospice at home is a better choice then the nursing home if you can manage. My cousin’s husband graduated from hospice after being on it for a year. My mom was on home hospice for 8 months before she passed. You are in control when doing Hospice at home. My mom was fortunate to have a good retired employee insurance with the government in addition to Medicare. Medicare pays for the Hospice, My moms secondary insurance which had prescription coverage allowed us to not change any of moms medicines to the hospice covered ones. As for supplement items like probiotics Hospice said she no longer needed. Her doctor disagreed so we continued to by Align. My mom was able to continue taking her Eliquis, BP meds, and name brand Synthroid. Hospice was going to change her to the generic Synthroid which she was told never to take and a different blood thiner that would require weekly blood monitoring. So be at peace with your decision but become informed. Hospice decided mom did not need anything they did not cover. As I said her doctor did not agree. Hospice was a great blessing. They sent someone in 1 day a week for bathing which gave me time off. The lady we had said she would bath mom and get her in a chair and text me when she was leaving. (I lived across the street) A nurse came in once a week to check on mom and take vitals ( vitals were not required of the nurse but she felt it gave her a better read on how mom was doing. When it became apparent we needed a hospital bed and Hoyer Lift these items were provided. The hoyer is easy to use but I had to you tube how to use it. The equipment guy was not a big help. Going on home hospice at home will not shorten his natural life. My mom was never administered morphine, she died at home of natural decline and causes.

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Good information, KaleyBug.

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I think Hospice is the wise choice of the two. My father and brother both were on Hospice. I felt supported by the service. They were comfortable and pain free.

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My spouse with dementia has been Hospice for over 2 years, regular RN visits, plus the provide many supplies that you now purchase......an suggest you keep him at home, as with this covid virus you will not be able to visit him. Any family member available to help with his caregiving? If not then will have to find a dependable person to help you....the nursing homes usually have more patients than CNA's to monitor their needs.....finances dictate the personnel to patient level. At home you know the level of care......accept the burden an get on with it.

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Sounds like Dad made the decision, not you.

Respect it.

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My dad is on hospice care. How do I know if I made the right decision?

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