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.
I think the guilt would really be overwhelming if you didn't involve hospice, as he would continue to deteriorate.
Comfort yourself and know that you are doing the best thing you can by bringing hospice into the situation so that he can pass without further distress.
And take whatever time you can to relax and prepare to be available for him during his last days.
They will manage his pain.
God bless and comfort you during this very difficult time in your life.
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.
For both of my parents, the doctors recommended Hospice to which I learned as much as I could about this time in a person's life, what happens to the body and the organs, etc. I didn't want my parents to be in terrible pain, so I was thankful Hospice was there.
Hope you can make a decision that you are comfortable with. And even then you will be second guessing yourself, which is quite normal for us to do.
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.
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