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I am grateful for the collective wisdom of folks on this forum. My dad is almost 92 and has been on dialysis for almost 3 ½ years. He has had some cognitive decline over last 2-3 years but it has gotten worse lately. He will never voluntarily stop dialysis; from what we can glean from a recent conversation, he sees stopping dialysis as suicide (rather than a choice, just like it was a choice to go ON dialysis). He is getting more and more feeble and we feel like we are caught between a rock and a hard place…dialysis is keeping him alive, but at the same time it's extremely hard on his heart and everything else. He’s constantly exhausted; is sleeping more and more. My sister and her husband moved in with him after our mother died, to keep him in familiar surroundings. My sister is POA, and I told her she is not making this decision in a vacuum, but it’s a borderline ethical/moral dilemma to keep him on vs. take him off, and it’s compounded by the fact that he is at some stage of dementia (not formally diagnosed but it’s evident). We’d like to make this decision with him, not FOR him, but we know that we may be forced to, sooner or later. Any advice on how to have a conversation with him about ending dialysis at some point would be appreciated...i f that's even possible. If anyone has been in a similar situation, how did you handle it?

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Include dad’s doctor in any serious discussion, and let the doctor lead the way. Don’t let it seem that you and sis are making the decisions on your own. Sorry this is happening, and good luck as you face what comes next.
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YaYa79 May 19, 2025
Thank you Fawnby. Dad's PCP doesn't appear to have much experience with these collective issues (dialysis and dementia); he told Dad during a checkup in July of last year that Dad could choose to stop dialysis at any time; Dad indicated he understood and then less than a day later completely forgot the whole conversation. Dad's nephrologist, who put him on dialysis at 88 when Dad was already showing signs of dementia (but could show-time for doctors pretty well)....I doubt he would ever tell Dad to stop at some point, but I guess it's possible.
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Your father is correct. At this point, having made the choice to fight to live, and to go on dialysis and endure all that involves (which he, better than anyone else recognizes), it would be suicide to stop it. Or rather a "choice to die" rather than endure onerous treatments with the eventual same outcome.

Anything that we do or do not do is a right to treatment and in the case of dialysis amounts to a "right to die" rather than accept certain treatments. I, as a retired RN, long ago wrote into my Advance Directive that I would not accept dialysis even temporarily, nor artificially delivered nutrition of any kind. That was my choice. Your father chose otherwise. He chose to extend his life.
HE STILL CHOOSES dialysis.
It isn't up to you to negate his wishes until truly he has no understanding whatsoever of anything at all, and is living a life of misery and torment and you are asked by his MD to make the decisions for him as his POA.

You do not have choice here, as I see it, to make this decision for your father, who long ago made the decision, is still comfortable with that decision.

Now as to your sister and yourself, you each are within your rights to make your OWN decisions as to much hands-on caregiving you do. I know you know that. I am sorry, and I wish you luck, and I am thankful you are discussing all this with one another and with your Dad. Best of luck. Hope you'll keep up updated. At some point, let your Dad know, when he is exhausted with all of this you will assist him in trying to have dialysis removed in which case he can go into hospice and will be medicated for relief of any pain. Some people without dialysis do "surprise you" by living for quite a lot more time than predicted.
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YaYa79 May 19, 2025
Thank you Alva; I appreciate your perspective.
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Thank you Geaton. Yes, the dementia part of this makes this especially difficult.
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I agree it is time for a hospice discussion. If he is at "some stage" of dementia, regardless of whether it is diagnosed or not, you may not have a fruitful conversation with him since dementia robs people of their reason and logic. I wish you all peace in your hearts as you seek a path forward together.
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I recommend not having the discussion yourselves, you definitely don’t need to be seen as the enemy but always as the supportive family. Ask his doctor for a hospice referral. My dad chose home hospice for himself after a private talk with an excellent hospice nurse. She explained his prognosis, laid out the future in clear terms, and answered his questions with honesty and kindness. He chose to discontinue endless treatments for congestive heart failure that weren’t working anymore and leave this world in peace. We got to be loving family. I wish you peace on this journey with your dad
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YaYa79 May 19, 2025
Good advice, thank you for responding.
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