When is hospice the right choice?

Hospice can be the kindest way to let your beloved Father go in peace. Please be at peace yourself. Bless you.

The original writer, passingfancy, hasn't return back since writing this question 12 days ago. Hope everything is ok.

I dont think i mentioned this before but even if i have i'll send the reminder again that there is pallative care which is different from hospice and something you can check into.

Read a book called "Being Mortal" by Atul Gawande. Good discussions on quality of life versus just living. Hospice is the kindest route for those with terminal illness.

My Mom was under hospice care and passed away 3 weeks ago. She suffered from Parkinson's and dementia. She went pretty quick. She started declining one week and the next Wednesday she was asleep. I felt like we were starving her but her body naturally was shutting down. She would not have wanted to live like this, which is why she was DNR. I don't know that anyone would want to live in that state. Mom was getting no medication whatsoever, only oxygen. She went peacefully early on Friday, 05-18-18. Know that you are doing the right thing for your Dad. Let him be free. I miss Mom everyday but I take comfort knowing she's no longer trapped in her body.

My mother has been in hospice for three days now. It’s a hard decision, but one that I know is best for her.

Oh you poor, strong loving daughter. You are in a tough situation, thankfully your dad gave you his wishes when he signed a DNR, he doesn't want to live quantity with no quality, that is what most of us think of when making the DNR decision.

Love him, be there and be thankful for his thoughtful forethought. I had a friend that was basically unresponsive in hospice, I sang to her, put lotion on her and told her it was okay to let go, she is loved and will be missed. I believe it helped her and I know it helped me say goodbye with all the love I felt for her.

I pray that you find peace and know that you did a loving, generous thing by not prolonging his suffering. God Bless you and give you strength on this difficult journey.

My mother started on hospice services at her facility last week. She barely eats, and gets angry if you even so much as offer food, has lost a lot of weight, and the nurses suggested having her evaluated by hospice. The first time they came mom herself said no thanks, but then again she has dementia and of course thinks she is just fine. The next week they didn't ask her, they asked me, and did a more thorough exam and determined that yes she is a candidate.
These people have been a blessing. They help me to understand the dying process, including the loss of appetite and weight loss. They offered chaplain services. I have access to help even if just to talk 24/7.
My mother is still active, dresses herself, feeds herself (the few bites she will eat), and is able to carry on a conversation, but has no idea of time or age or location, and no short term memory at all. So she is in the transitional stage, not in the actively dying stage yet.
Hospice does not always mean that death is around the corner. The folks that help me have other clients in my mother's ALF that have been on their services for well over a year.

One of the final stages of dying, from what I have read, is that the patient refuses to eat. Refusal of food, for the dying, is very strong. We tried to somewhat pry open my husband's mothers lips just to get some apple sauce into her. She knew what we were doing and adamantly refused keeping her jaw as closed as a vice. I was even surprised at her strength in keeping lips together. When it comes to that time in the process of dying, or near the finality of living, a feeding tube would be so much against what the patient wants and would only extend their misery. Hang in there. You are doing the right thing by going to Hospice. They are a wonderful resource with which to endure the last days of living for, not only the patient, but for yourself.

If I may I would outlaw the tube as it is the most frightening experience for a person who can object but patients without cognizance it is death and discomfort. Hold my hand till I die, keep the patient at home and cherish the last days.

I look at quality of life. Being stuck in a bed barely moving, barely able to open his eyes and medicated for extreme pain. What type of life is that? The only interaction is changing briefs, bed linens and given meds. He might not be aware of that.
The surgery alone could kill him given his weakend state. What about the anesthesia alone?
I was given that choice for my dad. They said he could pass from the surgery, but wanted to do it. Why? So it could prolong the nothingness that has become his life? Basically sleep 24/7. Doesn't hear the tv.  Doesnt know if its day or night. Or respond to anyone. I said no. I know I wouldn't want to live that way. 
The medication takes care of any pain. The body systems start shutting down. 
I've taken care of people in vegetative states. I know what goes on. I think it ties back into the dnr. I could understand if he was talking, alert at times, and able to interact with his surroundings. 
My mom stopped eating over time. She wasn't in any pain. She was able to verbalize if she was hungry. It is a natural part of the aging process.
You don't need to feel guilty for anything. You are there for him. 

passingfancy, what do you think your dad was thinking about when he did the DNR order? I believe that not being tube fed is a very common thing to think about before initiating a DNR order. It's good that he has a DNR and it's wonderful that you are there for him.

cak2135, I remember back when both of my parents were on Hospice. My parents were very strict Catholics, but I had left the church decades ago. On my Mom's final days, it was a Sunday and there was a Baptist minister having a service at the facility.

One of the nurses wanted to know if it would be ok if the minister came in to say a prayer for my Mom. Dad and I were more than happy to have his presence. The minister and his wife had some wonderful words to say that were so very comforting.

The next year my Dad was on Hospice, it was a very quick transition for Dad. The facility tried to get a local Priest to give last rites but they were unable to schedule it. An Aide heard about this and asked my Dad if it was ok for her to pray with him. Dad said yes.

So it doesn't matter if one attends church or not. It depends on what the patient wishes to do and what they felt comfortable with. The patient could always say "no". If I was a patient, any religion that came through the door to pray would be fine :)

What should you do if you don't attend church?

Having been the primary care provider to my client for 3-1/2 years, I regret that client (along with input from her sister) said NO to hospice a month or longer before client actually got it. Client was with Hospice only for 3-1/2 days before she passed away.
Hospice was exceptionally helpful to both my client - and me - being the primary care provider with no support from family -
MY UNDERSTANDING IS THAT HOSPICE wants to keep the person COMFORTABLE.
Morphine helped my client immensely for those last 3-1/2 days. They helped me with all kinds of needs-too numerous to mention here.
As a family member, I encourage you to get this support for you - and your dad.
In the long run, as was mentioned, he might get off Hospice care if no longer needed accordingly to their criteria to get it initially, or he may transition peacefully with whatever care he does get. The in-between 'keeping him alive' with drugs or feeding tubes is a very personal decision. What is key to me is that you let go of the burden of responsibility-let go of the emotional and psychological load you've been handling and let Hospice support YOU as much as possible. From my point of view, Hospice was a Godsend to me - and my client - and I would think the same for family members making these decisions - although I am projecting here based on my own experience.
Gena

I would like to encourage you to reach out to the hospice team that is caring for your father. They are also there to support family members. The team not only consists of medical personnel but also a chaplain, a social worker, and a bereavement specialist.
This team is available to answer questions that you may have and offer spiritual/grief support - now and after the passing of your loved one.

My prayers are with you and your family!

Hospice care can be done at home or at an appointed "hospice facility." If your father already signed a DNR, that seems like a pretty clear indication that he did not want his life prolonged artificially when the time came.

With a 20-year-history of Parkinson's disease, plus the dementia - his days on planet earth are already numbered. He will "waste away," whether or not you put him on Hospice care. The least you can do is to make him comfortable in his last days.

Dina; A doctor can recommend Hospice but can't make Dad be on it. That's Dad's choice. Is that what Dad wants?

Feeding tubes can be life saving but like everything else the body has the final choice and the body will go into it's final shut down phase when the feeding is no longer processed and causes discomfort.

From the way your father sounds it would not seem a good idea to burden him with a feeding tube so let hospice do it's job and keep him comfortable for whatever time he has left and don't torture yourself wondering if it the right decision.

Please let your Dad go. The feeding tube is no way to live and he would have no quality of life.
My brother had throat cancer and needed a feeding tube for several months. It saved his life because he could not eat . But he is now cancer free and is strong and healthy. So there was definitely a positive result with the feeding tube. But it sounds as if your Dad would only receive nutrition but may not even be aware that he is still living. I don’t think he would want to live on and require full time care . He could live with the feeding tube for 1-2 more years. I doubt that would be his wish.
Don’t feel guilty even though I know it’s a hard decision. My husband is in the late stages of Alzheimer’s but I will not prolong his life with a feeding tube when that time comes. He has signed a DNR about 3 years ago and I know he has accepted the fact that he is ready to go.
It sounds as if your dad has accepted it also.

my dad had continuing uti's for years til they began happening every month - we would take him to ER - they would admit him for a couple of days, with iv antibiotic and send him home, good as new, until the next one hit. This past month (May) he had two uti's and one of the doctors decided - it's time for hospice.
Not really sure why? Then thought am I just in denial about this, but my dad is perfectly fine in every other way - no high blood pressure, no high cholestrol, never smoked in his life, a very healthy 98 year old! Doesn't get around much but he's content. Why did this doctor decide it's end of life care for him?

My husband was 75 when he died unexpectedly two days ago. For the past 8 months I watched him go from being a vibrant person. To bring wheelchair bound and unble to transfer from his wheelchair in and out of bed.
The stress of seeing him like that was terrible.
He also had a DNR and before I called 911 I had it in my hand.
Your dad would not want to live this way, would you?
Hospice will keep him comfortable and provide you with support. Don't keep your dad alive when his quality of life is so poor.
You have to ask yourself how will I feel in a year.
I know in my heart that my husband did not the quality of life he endured these past months.
I would never wish him back.
It sounds like your father can not get better you need to honor his DNR wishes. God unless you whatever decision you make is the right one for you.

I would suggest you do hospice at home. Why introduce your dad to an unfamiliar place with strangers; unless he already resides in a nursing home.

Whatever decision you make, is the right decision.

We used hospice for my dad and am I'm so glad we did. He had been hospitalized for pneumonia and flu but was already in probably last stages of dementia. The doctors at the hospital suggested it. I think they knew more of what he was facing than we did at the time. We called in hospice and they helped him and us transition. He already really didn't want to eat and his organs were shutting down. I don't really think he was in a lot of pain, but the medications helped with his agitation and restlessness. I think the hospice chaplain really helped my mom understand the transition and to give him permission to leave. Everyone from hospice was compassionate and caring. The hospice chaplain has called my mom and sent articles every month since his passing and honestly, that's a been a big factor for our healing. Hospice is more than end of life transition for the patient, for us it was transition and support for the family too. The relationship my dad had with hospice was 10 days and he really wasn't awake for it. The relationship we've had with hospice has been 14 months. Don't feel guilty at all. They will be a gift to your family.

With both my parents, their doctors told us when it was time.

Don’t feel guilty! Feel proud that you are helping your dad! In hospice care you are giving him a better more peaceful life. He will be pain free. 20 years of having Parkinsons was no easy task! Let him be pain free for the remainder of his life...you are doing the right thing for him! You are giving him dignity, only a loved one of Parkinson person can understand.

My husband passed in hospice care. They manage the pain really well, I doubt your dad is feeling anything. Usually what happens is the body slowly shuts down, it's hard I think to wrap our minds around passing like this, but our bodies do have a way of methodically shutting down naturally, pain medication helps along the way just in case. Passing slowly isn't like being injured in an accident. My husband started to shut down before the sleeping phase, for a couple of weeks, and he felt nothing. He quit eating, and went into the sleeping phase after that. As caregivers we also have additional grieving, and it starts before a loved one passes, that grieving starts when we see the decline in our loved ones health and we know it's coming. You're grieving now. You've done the right thing.

Ah, the question of a feeding tube. (sigh). Having worked in the ICU, in Hospice, and in the Dementia-care unit, I've seen several episodes of 'to put in a feeding tube, or not.'

Let me say first that feeding tubes can be an actual life-saver for people who need them, especially when they're temporary and/or especially when the person is otherwise cognitively intact and fairly functional. The film critic Roger Ebert had one for several years following cancer surgery that took away both eating-by-mouth and speech -- and during those years he continued to work and write.

But over and over again I saw the folly of putting a feeding tube in someone who has dementia. People imagine that a feeding tube will prevent aspiration-pneumonia, for example, but a belch can still bring the liquid feeding material up the esophagus and into the airway to the lungs.

Urosepsis is pretty serious, especially in the elderly, alas. If he's truly unable to do more than open his eyes, I wonder how much he is aware of anything? Do his eyes follow you? Can you ask him Yes/No questions with 'blink once for No' or something?

Your description sounds like Hospice would be good. He's already said he doesn't want chest compressions, which tells me that 'life at any cost' would not be his choice. The goal of Hospice is to give each patient the best day they can have at that time, which would include pain relief as good as possible, prevention of such symptoms as nausea, constipation, bedsores and so on. Hospice would also provide some support to you, which sounds like it would be needed. Hospice chaplains are generally trained to help you talk about your feelings and consider your options, helping you integrate any religious teachings or opinions you already have with whatever is going on now, but not imposing their own religious views. Hospice social workers have similar expertise in a more secular realm.

By all means have a serious talk with one or both of those people.

And please do bear in mind an important fact, obvious but surprisingly often overlooked: Nobody can prevent him from dying; the best we can do is postpone it. All we can do, as the families of the patient, is try to choose the best circumstances and to support life as long as it is meaningful. And let life go when its meaning and usefulness to the patient has gone.

My heart goes out to you in this tough time.

My father had a DNR but the hospital he was in inserted a feeding tube without consulting my mother. She had them remove it.

If your father can still eat anything, let him eat. I would not recommend the feeding tube myself if there is no real quality of life to be had. From what I understand, as awful as it sounds, there is no real suffering in 'starving to death.' However I can understand your qualms about this. I recently had to let a cat be put down because he was no longer eating or able to urinate and I hated to see him suffer! It was not an easy decision but we had tried everything we could and he was not responding. Although all signs were that he was very unwell, I still question my decision, but all his signs were that he was not going to get better, only worse. I still miss him...

Please don't be hard on yourself over this. Whatever decisions we make are based on what evidence we have and what the prognosis is. You can't beat yourself up for making hard decisions like this.

Hospice is the right choice. Quality of life is important, not length of life. Would you choose to be kept alive in pain, with a feeding tube and unable to move about? Yes, you have a difficult decision to make but in your heart you know what the right choice is.