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#421255 - 05/13/16 12:41 PM
OT: Dialysis or not...?
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Senior Member
Registered: 01/02/04
Posts: 7285
Loc: Lexington, Ky, USA
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Over this weekend, I have to make the hardest decision of my life.
I'm the legal guardian of the widow of a long time music partner. She's a 74 year old African American with a 69 IQ (about a first grader, mentally), age related dementia, many other medical issues, and the big one...Stage 5 renal failure. Her kidneys have shut down, and something needs to be done NOW!
The issue is the dementia and whether or not she can handle the pain, uncertainty, unfamiliarity, exhaustion and other often serious effects of dialisys.
She pulled the fistula (the place prepared for dialysis-a joined artery and vein)out twice when it was first installed and was in the emergency room twice.
She is shaking, weak, has cramps, etc. Her long-time Dr. says dialysis is the only option, and ignores the dementia factor, which is major. A team of experts from the University of Kentucky department of nephrology say that dementia and dialysis never mix. And, to make things worse, once dialysis starts, you often die within a week if it is discontinued.
I met this family in 1960, when I was 15. All are challenged, including my former music associate. At one time or other, I have helped all of them financially, to the tune of over $100,000.00. Neither son could qualify as guardian, because of legal/financial troubles. Neither wanted to, when they found out there was no compensation involved. Each child saw mom once last year, when I held a dinner for her and they showed up for a free meal.
The three living kids weren't even aware that mom was sick. I moved her from a condemned home where the Dr. said she would have died in three more weeks. That was 5 years ago.
This is biggest, most life-affecting decision I have ever had to make. Deciding to withhold treatment results in certain death within 6 months. Dialysis, in this case is brutal and not recommended by many experts.
Anyone been in or near this kind of situation?
What did you (or other responsible people) do? What would you do here? Anyone currently getting dialysis?
As legal guardian, I have the final say.
I haven't slept for a week, and have a 30 hour film score session starting Sunday morning. The decision has to be done by Tuesday at noon.
Any/all input will be appreciated.
This is impossibly rough. I would appreciate, and really NEED your input.
Russ
Edited by captain Russ (05/13/16 12:47 PM)
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#421260 - 05/13/16 02:05 PM
Re: OT: Dialysis or not...?
[Re: captain Russ]
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rosetree
Unregistered
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My feeling also says that a certain quality of the remaining life is more important and humane than a permanent medical treatment that would make her life unbearable, if this is the case. Of course, you also have to check the legal side of the matter; I assume in Germany one would not even have the right to reject the dialysis, a lot of discussions about these issues are ongoing here. I found some German-language medical studies that reveal that obviously a lot of German patients with dementia receive dialysis, and it is emphasized how difficult this often is also for the medical staff. This is one link, unfortunately in German, I'm adding the abstract in English. I would recommend you to collect and evaluate all expert assessments you can find, and than make your decision with a clear conscience - that's all that can be asked of you. http://www.afnp.de/dokumente/pflegepreis/2008/Kollmeier.pdf"Demented patients on dialysis – A challenge for the nephrological nursing staff Against the background of the changing demographic situation, the introduction of the nursing care reform in 2007 has been followed by an increase in public interest, in particular in dementia. The growing trend towards ever increasing numbers of demented patients is also to be observed in nephrological nursing. The case of a patient of the dialysis centre in Bad Tölz serves as a basis for a discussion on how the treatment of such patients might be standardised and improved. The most important of the proposed solutions is the provision of nursing care consistency and the introduction of a “personal nurse” model."
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#421280 - 05/14/16 02:35 AM
Re: OT: Dialysis or not...?
[Re: bruno123]
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Senior Member
Registered: 09/21/02
Posts: 5508
Loc: Port Charlotte,FL,USA
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God bless both of you. I think it is time to let her go to her heavenly home.
_________________________
pa4X 76 ,SX900, Audya 76,Yamaha S970 , vArranger, Hammond SK1, Ketron SD40, Centerpoint Space Station, Bose compact
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#421300 - 05/14/16 06:32 PM
Re: OT: Dialysis or not...?
[Re: captain Russ]
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Senior Member
Registered: 08/23/04
Posts: 2202
Loc: Dayton, OH USA
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I read a book a few years ago by Dr. Atul Guwande, called "Being Mortal." A well written, brilliant book, Guwande's skill as a writer is almost unrivaled in the world of healthcare.
This book examines the life and death struggle within our current healthcare system; how programmed Doctors are to "save the patient/defeat the disease, etc..."
I thought of this passage and your situation as I drove home from work today:
"....doctors don’t listen, Gawande suggests—or, more accurately, they don’t know what to listen for. (Gawande includes examples of his own failings in this area.) Besides, they’ve been trained to want to find cures, attack problems—to win. But victory doesn’t look the same to everyone, he asserts. Yes, “death is the enemy,” he writes. “But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee... someone who knows how to fight for territory that can be won and how to surrender it when it can’t.” In his compassionate, learned way, Gawande shows all of us—doctors included—how mortality must be faced, with both heart and mind.
You know what to do...
You know how to do it...
Life's Rich Pageant, my friend...
_________________________
Bill in Dayton
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#421303 - 05/15/16 01:49 AM
Re: OT: Dialysis or not...?
[Re: captain Russ]
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Senior Member
Registered: 08/22/04
Posts: 1457
Loc: Athens, Greece
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Russ, We all come in this life, live, and then pass away. Sometimes, too much time in this Earth is not good at all. She's going to be better remembered by you and whoever wants to remember her (sadly, not her children) the way she is now. Better remembered as lately sick, but not as a slowly (and surely) fading shadow of herself, while in constant pain. I watched my father fade away in this manner in the last three years, no caring person should have this memory.
I don't envy you, you face one of the most difficult decisions one has to make. But my opinion is that this decision is already made by a higher authority, and all you have to do is to act as an administrator, just make it happen. I know that the burden will be the same, though.
If the situation was different, I would probably go for dialysis. But, in these circumstances, if you need to better 'reinforce' the decision that I suspect you have already made, look up the word "enough" in the dictionary. Not 'enough' in the form of what you have done for this family over the years, but 'enough' in the form of 'what else does this poor soul have to suffer to finally have some release?'.
Thanks again, for showing us that aspect of your wonderful and caring soul. I am sure she would (and silently will) thank you too.
Edited by trident (05/15/16 01:51 AM)
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