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

"A team of experts from the University of Kentucky department of neurology 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."


Russ,

For all the years you have been on this forum, you have shown a tremendous heart. I would trust the team of experts and not go with the dialysis. While she is around, I would try to make her as comfortable as possible and hope that the good Lord will lead her to everlasting life.

Stay Blessed Sir.

Russ, i cant help you decide on this, the only advise i can give you is to never regret the dicision you make. In general its best to take these decision together with other caring fammily members to share the burden of the decision.

But whatever you choose, it was the best decision you could have made with the knowledge you had at that moment. So never regret decisions you take or blame yourself afterwards.. Because thats not fair to yourself. You did as good as you could, this post is proof of that.

I think you know the answer. The quality of what life she has remaining will be better without undergoing the dialysis.
My young nephew (32) is having problems with dialysis, and it would be many times harder for her.
You've done so much for this lady and the family; you have to do one more thing, and that is let her go peacefully.

Russ
Don said the perfect words "quality of life" My wife was a Respiratory Therapist and this saying came up often when a patient was confined to a ventilator. Its what really matters most.

You've gone above and beyond for this family so make your decision with a clear mind.
Sorry you have to be put in this situation.

Good luck

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."

I agree especially with the comment "you have to do one more thing, and that is let her go peacefully."

Russ, I have been walking with a dear friend that is going for dialysis treatments. He is slowly losing his strength and body capabilities. What decision should he have made? I am told that if he refused treatment he would be gone by now. His treatments started six months ago. He is still alive and is slipping slowly away.

If I had to make that decision it would be in prayer. I know that I would receive an answer, and then I would live by that answer. This decision should be made with help from above.
My answer is based on my belief.

Those of you who have a different belief --- and I highly respect your belief – may be able to add to Russ in a different way.

Russ you have been given a difficult decision to make that is reaching inside of you – view that decision as a gift given to you; it is an honor from above.

John C.

God bless both of you. I think it is time to let her go to her heavenly home.

Thanks, everyone. I met George and Janice 56 years ago next Tuesday.

I just left her place. She didn't know what day it was.

She has an appointment with her new kidney doctor next Tuesday-week. I think she may not be here by then.

Sadly, she does not have a clue about what's happening. She just knows she hurts and does not know why.

Her two children in town and daughter out of town have been here to visit and are calling other family members to suggest a visit soon.

I just need to convince myself that I have done everything I can to have the best end of life.

She's an innocent. She is suffering. I want it to be over for her.

Man, this is rough.


R.

Russ stop saying "I" you are not in charge.
John C.

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...

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.

Russ. Difficult decision to make but it's all down to the quality of life and which would be the most comfortable for the patient, that then makes the decision a little easier.