implications of refusing dialysis

[cedar]

My mother had kidney failure, but would not get dialysis.  Just trying to understand why a person would choose to not have dialysis when the implications of that choice are so serious.

[willieandwinnie]

cedar, this is the introduction section. Please tell us about yourself. 

[cedar]

I am someone who nearly lost my mother to kidney failure.  She had a transplant though and is doing ok now.    Before she went on dialysis, it almost seemed as if she was playing Russian Roulette, becasue the doctors told her she needed dialysis she refused, and this went on for years.  Our family sttod by, not wanting to force her into anything, and sort of getting de-senstized to what was going on.  Then one day she collapsed and nearly did not survive.   

I found this site when looking on the internet about why someone might elect to not get dialysis.   I found an older thread that did discuss this, and felt relieved to see that I was not the only person who felt that refusing dialysis can seem like a choice to not live anymore.   I am just trying to understand the struggles people with kidney failure go through, since my mother would not talk openly with me about it. 

[Maxridex]

Well Dialysis is simply boring, taking a whole loads of your time and simply it's hard to live through it.

Modified : 

[willieandwinnie]

Well cedar,  I hope you can find some useful information on IHD. We are a wonderful group and cover all aspects of kidney disease. There are lots of folks here with transplants. I'm glad you are looking for information to understand things better. Congratulations to your Mom on here transplant. Hope to hear more from you. 

[cedar]

Well Dialysis is simply boring, taking a whole loads of your time and simply it's hard to live through it.

I just think of how thankful I am that there is the option of dialysis and transplantation.   If someone does not want to go on dialysis at all though, is the right thing to do just stand back and leave them alone?   I know it is a choice, but the implications of that choice also have to be considered.






EDITED: Quote error corrected - Bajanne, Moderator

[glitter]

ITs a personal choice I think. My husband suffered greatly on dialysis, his quality of life sucked. Now there are a lot of people here who do very well on dialysis. I still think its the dialysis persons choice. It is not considered suicide by doctors, nor by many here. My husband died from a heart attack, but if he would have wanted to stop dialysis- I would have had no choice to support his decision. I would have been heartbroken...I would have cried.....but ultimatly no one could make that decision but him. 

[Romona]

Dialysis is a treatment option. Just as any option such as chemo for cancer, it is a personal choice.

[Wallyz]

The roman Catholic Church has one of the hardest lines on Suicide/ Euthanasia, and here is what they say about medical treatments.

"When inevitable death is imminent... it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to a sick person in similar cases is not interrupted."

Each case is different, but this is the hard line, and it allows people to refuse treatment in some circumstances.

The fatc that you can't talk about it is more concerning to me than the decision to not dialyze.

[cedar]

If someone has no other health problems, they can survive kidney failure for many many years with dialysis and a transplant.  Cancer is a different sort of situation.

[cedar]

With my mother, it was the not talking about it that was so difficult, because we did not have a chance to prepare even as years went by.   Being able to prepare for dialysis is something to not be taken for granted. 

[glitter]

But if someone has no other health problems, they can survive kidney failure for many many years with dialysis and a transplant, and the sucess rate is good.    If someone does refuse dialysis, and of course this is a personal choice, would they want to give family and friends a chance to accept this choice?   Or is that something also that is a personal choice?

It depends on the individual- my husband had no other problems- he had cancer that was 100% cured, but left him with no kidneys. He did not have heart problems or kidney disease or anything else. He was on dialysis for almost three years. Constantly having his fistula worked on, going in and out of the hospital for anemia, he caught pnuemonia multiple times over the last three years,(from minor surgury) and it did eventually killed him.  I mean dialysis is not a simple thing.


There are some here who have been on dialysis for many years (over 20)- and do super- I think its up to the individual- if the person is not interested in being proactive about there condition- maybe they don't do so well.
 I know your speaking from a position of heartbreak because you love her, but dialysis is no walk in the park either, there are lots of side effects. My husband puked the first year so much- he had to be hopitalized over 40 times.  he would have quit then, he didn't because I begged him to hang on- and then he got somewhat better  for 2 years, and now he is gone.

Was his struggle worth it? I am glad we had three extra years, but I feel bad that he suffered like he did.

I hope this is not too rambling-Its just if she doesn't want to do it- make her last days happy not guilt ridden.

[cedar]

I appreciate your perspective, thank you for sharing it with me.

[G-Ma]

I am doing well at this time but I have told my children that once I feel I have no quality of life I will be stopping dialysis and they understand my reasoning and have agreed with that...but this all involves """communication""" with each other.

[RichardMEL]

This subject is one that will bring up many and varied opinions I think - and a lot based on one's experiences, religious beliefs and personal morals. At least in the general community. It is interesting to me that just about everyone has come back with similar responses (and those I agree with) - but I guess that reflects the unique perspective that those living with a terminal condition (ESRD) all face. In a way it's something that many others simply can't relate to - because thankfully it's not something they have to worry about for themselves. In a way I feel I can relate to someone who is HIV positive or dealing with serious cancer or other like condition.

As the others have said I feel it is a very personal decision and I think it also relates to where you are in life. If you're elderly and your quality of life is limited... who is to say one should push through enduring everything that dialysis presents to be miserable and always struggling (let alone other complications) - at that point would the pressure to continue be for the benefit of the patienr or their loved ones?

However someone in my situation - relatively young (just don't look at my grey hair OK?), working and in theory a long future ahead of me.. well many would say that would be a stupid decision to make.. but then again who else should have the right to make a decision about MY life than ME? Now don't get me wrong I've never ever considered NOT doing dialysis, and I am the sort of person who does the best to keep things going along smoothly and making the most of it.. but I have seen others who do not cope well and I could understand a desire to not do it.

If I were in your shoes and it was my mother who said she wanted to not start dialysis I would respect her choice but I would suggest to her that maybe she should TRY it for a few months to see how it was for her - if it made her feel better and it could help her be more active in her own life, for example rather than dismiss without knowing the experience. However at the end of the day if she still said no - it is her life choice and I would not harp on about it.

I think it is amazing she lasted so long and then still got a transplant and is doing well! That is the best outcome of this story and LUCKILY she got through this part the way she wanted.

(Although it must be said that unless the transplant was a live donation I wouldn't have thought she would have been very high up on the list due to being non-complaint). Did she get a live donation?

At the end of the day we're each responsible for our own lives and choices we make. I am a firm believer in that. Good and Bad things happen to us - some we can control and some we can't. The things we can influence with our choices in life.. well I believe we have our own responsibility and I don't believe in putting blame on others for my own life choices. That's just a personal thought and perspective though. EVeryone else is different.

[paris]

   cedar.  I hope you find some answers that give you comfort.  It is all very personal and depends on all circumstances in your life. I don't think there is one simple answer.  But, reading other people's experiences may help you understand part of the emotional as well as the physical, challenges that go with any life altering disease.   We are glad you joined.  Welcome to our family   



paris, Moderator

[cedar]

I do appreciate hearing the views of people who are living with kidney disease, and it helps to see different sides of things.

My mother did do things how she wanted, but there is no happy ending to this story.  I will not go into the details here though.  I would like to say, as someone who has been close to the disease from the outside since I was young, that people with kidney failure are not as alone as they may feel.  Other people can understand, even if from their own perspective, and even if they are not the ones who have to physically live with it.

[Bajanne]

Welcome to our community!  This is not an easy topic at all.  I  myself am so glad for the chance to see my grandchild grow up that I would hang on as long as I could!
We have a case here in the Virgin Islands that up to now I cannot understand.
There was a young man in St.Thomas.  He was a lawyer by profession.  He was also the leader of a very popular band.  Whenever the band visited my island, it was a knockout.
I was told that he had kidney failure.  He refused to have dialysis and died.
He had a promising career, the most popular band in the Virgin Islands and a young family.  Yet he opted to die rather than go through dialysis.   I found it rather selfish, personally.

Please keep posting.  Let us know how your mother is doing.  You are now a part of our IHD family



Bajanne, Moderator

[southyard]

My mother had kidney failure, but would not get dialysis.  Just trying to understand why a person would choose to not have dialysis when the implications of that choice are so serious.

When I was told I needed to n\dial'd I also stated that I did not want same.  Tho I knew the potential outcome they convinced me to try 5 months.  That 6 monasths ahs passed and I am still on same   but not a happy camper.  I some of my other problems keep getting worse I will again turn downthe dialysis.  Then I'd ahve about 2 weeks in a hospise.



My family fully supports that the decicion is mine alone. 

Dialysis is a big PAIN IN THE ASS.  3 days a week are lost.  Support your mother in her decion making.

[Rerun]

I would LOVE to quit.  But, I just don't have the guts to say 'no'.  AND I don't own a gun... YET!!!

                       

[dwcrawford]

I cannot answer your question.  Before dialysis I had made the decision not to do it.  After all, I'm 68 years old and that's really old  enough.  And I had no family who really cared one way or the other -  a few friends yes,  but no family.  I talked to a priest, a rabbi and a protestant minister, to a psychiatrist and two psychologist.  None had an answer any better than my feelings.

What made me change my mind?  My young friend Javier, who cried when I told him I wasn't going  to do it.  My Nephrologist whom I respect very much as a doctor and as a human being.  He says "I can't tell you what to do but do you want to hear what I would do".  mmmm Maybe that was it.  A member of the ihd community for whom I'd developed lots of respect and who life still gives me inspiration (I won't use a name here but this young person (who always says age is relative) knows who I'm talking about).

So my answer for me only, is it was my decision.  Honestly, there have been a couple of times lately when I felt maybe I'd made the  wrong decision, but not many.  Plus this decision can be reversed.  The other one was pretty final.  No one should feel guilty if a love one chooses not to go forward with it.  It is their decision.  No one should make if for them; however, I think expressing your opinion is perfectly appropriate.  Then, let it alone.

My 2 cents often is worth just that.  Sometimes even less.

[G-Ma]

Why do you need a gun?

Southyard...great to hear from you...come talk to us more.

[Rerun]

Why do you need a gun?

Nevermind..........

[dwcrawford]

I understand.

[Hanify]

Oh, it's awful thinking that you are going through this.  I feel for your mother and you all.  And no, dialysis isn't a walk in the park.  I agree with whoever said that I would encourage a person to at least try it - and then you always have the other decision to fall back on.  Dan, I'm so pleased you made the decision you did - and I heard that haemo is better with the fistula rather than a port - so you've got that to look forward to!