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

ZippyZee (?) Yes, they did. I was there the entire time. I saw what they did. I would have no reason to say this if it wasent true. I have nothing to gain either way. I am not misinforming the people. I am stating the facts. I am stating the truth.

I hope they don't *cut out his food intake *cut out liquid intake (claiming he can no longer swallow) *pump him full of morphine (asking you 'do you really want him to lie here and suffer in pain?')

We question so many things as we walk through our lives. I think it is good that you are evaluating your decisions that you make, essentially when they concern those you love who are vulnerable.

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.

My sister with the help of hospice killed my mother. I don't THINK this .. I KNOW this . There are many others who know this as well. And as for their '5 free days' with respite care .. you know so the caregivers can have a break .. thats where my mothers beginning to her end actually started. They took my mother off ALL HER MEDS on the friday she arrived at the nursing home. Of course it was downhill from there, as she told me "Somethings not right". I asked what does she mean, she replied "I don't know. Somethings just not right" After her '5 free days' at the FOUR SEASONS in Columbus Indiana, my mother came home .. where she died 5 days later. After stopping all her medication, they stopped her food intake. Then they stopped her liquid intake. Claiming of course she could no longer swallow. (Although it took her alittle longer than normal, she was swallowing) Not to mention they're pumping in the morphine during all of this. So yes, my sister along with the help of hospice purposely, intentionally and legally killed my mother.

My father diagnosed with cancer in dec 2019, everyone kept saying it's suspicious. I steered him off surgery which I feel guilt for now. While looking at second opinions during shutdown he got a spinal infection, three hospitalizations(spinal infection, sepsis, kidney infection) later last June I was told he was a hospice patient, I made the decision he really was not fully there. They told me he had a few weeks, two months later he was kicked out and I put him in rehab, six weeks after that he was home. He is fairly stable now - I have help 4 hours a day and my mom is with him. I am constantly tortured even though I know the best I could do I did with the info that I had. He still has cancer and I have been told that there is not much they could do now that wouldn't further weaken him, he is 87 and it has been a rollercoaster of emotions the whole year. I am doing my best but of course always question my decisions. He wanted the surgery yet I pushed of the second opinion and then suddenly the" s**t hit the fan as they say" during shutdown. My biggest regret at this points I feel like I took hope away from him although intellectually I think I made the decisions that were smart based on the info that I had, emotionally it's another thing altogether. It's been such. sad thing to watch, I can deal with the physical pain but watching him be in mental anguish about his situation is so difficult for me, knowing that I can't help him. It has been great to have him at home even though it's a lot for my mom who is 85, I have trouble with the anticipatory grief and try me best to keep it at bay. So many emotions so hard to deal with everything.

Aj,
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.

"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."

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.

Honey, don't ask that question. Be firm in your convictions. What you are going thru, ie, including the personal emotional turmoil, when there is nothing that can be done....at this point, let him do what he can, when he can. If he wants donuts for dinner.....let him have a donut for dinner. If he wants to try to jog a mile.....jog with him. Hospice is a tough decision. You don't have to tell him that hea dying, just be with him. You can't have regrets for being with him no matter which way you go. Don't torture yourself with the decision. Because technically, that decision is already made. Just enjoy him now.

what organ failure does your dad have? Have you tried holistic measures to try and cure your dad? I don't think you should give up on your dad, we all have been conditioned for years to think there is no cure for what ills us but it is. Herbs and plant-based foods are always a natural cure. Put your dad in a nursing home, read up on how to cure the body of any ailment naturally. Make instruct the nursing home that you will prepare your dad's meals. Fight to save his life.

Prayers sent for this most difficult of choices.

I had my mom on hospice for 2 years; although she had extremely advanced Alzheimer's, I used them as a walk-in clinic to renew her routine meds and lab work. When it came time to get a feeding tube (so she would not have to die of dehydration which can take 2 weeks) I revoked her hospice by signing a piece of paper, got her hospitalized, feeding tube put in and she was fed in 6 hours. She did great with it ***BUT*** a feeding tube requires a ***LOT*** of work to avoid complications.
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.

Sounds like Dad made the decision, not you.

Respect it.

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.

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.

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.

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.

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.

"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.

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.

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.

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!

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.

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

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.

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

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.

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.

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

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.

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.