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.
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.
They will manage his pain.
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.
God bless and comfort you during this very difficult time in your life.
No to the feeding tube. It really is just a money maker for the doctor and hospital, plus many may not know, but it can be a way to contact sepsis. You (and he) will know when it is time to say goodbye.
But perhaps what defines a difficult decision is that it is one without clear correct choices.
In the OP's case, I privately feel that the doctors' suggesting a feeding tube was deeply unhelpful. It would probably make it possible to prolong the gentleman's life significantly. But my - again, private and personal - view is that in his state of health, and in the light of his having previously signed a DNR which indicates that heroic measures were not something he was prepared to undergo, if there is one thing that is definitely NOT the right option for him, it's a feeding tube.
It would be comforting for the OP, perhaps, if her father is still able to swallow without aspirating, to remember that hospice will not prevent her offering her father treats. If he is hungry and able to eat, no one will force her to starve him.
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.
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.
Whatever decision you make, is the right decision.
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.
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 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.
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.
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.
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 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
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 :)