I'm sending my father to hospice care tomorrow and I don't know if it's the grief or doubt that's making me question my decision. My elderly father has Parkinson's for over 20 years and dementia onset in the last year or so. He always had a very strong will to live but his quality of life went severely downhill a year ago. Pain medication stopped working for him and he was in severe pain most of the time. 10 days ago he was admitted into the ER for urosepsis and has been here ever since. While the infection has cleared, it left him severly weakened to the point where doctors say he will never physically recover or move again. He is awake for brief periods of the day but cannot do anything beyond opening his eyes and is only able to respond to noise and pain. The choices available were to have a feeding tube installed which could prolong his life for months or years, or to send him to hospice and await death. My father has a DNR order but I don't think he ever factored in being kept alive by a tube. I don't want him to be stuck in a broken body kept alive by a tube but I also hate making that choice for him. What if by some small unlikely chance he wanted to keep fighting? The doctors can't even say how much awareness he has left - if he even knows who or where he is. I chose to send him to hospice care and I'm overwhelmed by guilt at the thought that I'm letting him starve to death. Logically, I know that isn't what hospice care is but seeing him physically wasting away every day just destroys me.
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.
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.
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.
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 :)
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
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!
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.
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.
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.
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?
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.
Whatever decision you make, is the right decision.
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.
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.