Stopping dialysis.

[casper2636]

What are (if any) the legal ramifications if I decided I wanted to stop dialysis? Is there any legal or medical body that could stop me from stopping my treatments if I had had enough? The information being presented for the "Right To Die" makes me wonder what are my rights as a dialysis patient living from one treatment to the next. Am I able to decide when I have had enough? Would my family members be liable? Would it be considered suicide, because, technically, I would have been dead years ago without treatment. I'm just wondering....

[Rerun]

Dialysis is considered "Life Support" and it is your right to quit.

Here is more discussion:  http://ihatedialysis.com/forum/index.php?topic=1113.0

          Hang in there.  To me it just seems more natural to keep on breathing....

                         

[kitkatz]

I have informed my family that when I have had enough I will quit.
Be sure family is aware of your wishes or they can over ride what you want with the doctors.

[kristina]

What are (if any) the legal ramifications if I decided I wanted to stop dialysis? Is there any legal or medical body that could stop me from stopping my treatments if I had had enough? The information being presented for the "Right To Die" makes me wonder what are my rights as a dialysis patient living from one treatment to the next. Am I able to decide when I have had enough? Would my family members be liable? Would it be considered suicide, because, technically, I would have been dead years ago without treatment. I'm just wondering....

I am wondering about similar questions on my "down-days" ... and on my "up-days" I firmly believe that I am doing quite alright
and because of that I am very grateful that dialysis was invented and that it is there to give me another chance...
... Of course we live from one treatment to the next, but if you count the hours of dialysis plus transport, in my case ~18 hours per week,
all that seems not too much - as long as my body continues to be able and takes-up the challenge every time ...
Best wishes from Kristina.

[OlManRivah]

Hang in there.  Look around! There's a lot of folks worse off than us. . . .

[Hootie]

Got to hang in there.....all of the patients and care givers have some bad days and some more than others. The alternative is not good...

If you are doing in center and can do at home give that a try....It has been much better for us...

Try a different method...Treatments like PD work better for some, others like in center, others like nocturnal, while we prefer at home....Our schedule and the after effects of treatment are much less for the NxStage at home.

We do not know your situation and what you are going through, but please look at all the options before reaching the stop conclusion.

Keep talking on here...people will love  and support you! 

[Vt Big Rig]

Keep up the fight casper ........... Like your signature says .. here is  a smile for you. 

Talk to folks on here ... Like others said try a different method for awhile. We are doing home with Next Stage and it has become a routine.

Like others also said ..."it seems more natural to keep breathing".....

[Simon Dog]

Hang in there.  Look around! There's a lot of folks worse off than us. . . .

Definitely.   Look at ALS patients, or some forms of MS.  Those people can degrade to the point where they lose even the ability to end their own life if they so choose.   Us dialysis patients can even do that legally (by discontinuing treatment).   For us, each day is a choice - and I choose to treat and live.

NxStage is giving me a pretty decent life, which will get better once I get the go-ahead for nocturnal.

[kristina]

Hello again Casper,
... I was just thinking what you mentioned earlier
and then I thought of the time when I started to teach myself how to read and write music
and how to play the piano - and I started with it just after I was diagnosed with the devastating news of end-stage-kidney-failure...
...  I thought at that time that it could be vital for me to learn something new
and to try and make some progress in an effort to “hang on” to life...
... Just a little while ago I played a very new piece of music I had never come across before
and I played it on the piano directly from the score with both hands at the same time ... and it sounded very beautiful...
... Just imagine: if I would have “thrown in the towel” earlier, I would never have had the chance
to experience such a beautiful moment and play on the piano a beautiful piece of music directly whilst studying the score at the same time ...
Best wishes from Kristina. 

P.S.
... The thoughts in this thread remind me of the thoughts of one of my favourite poets
Nazim Hikmet (Thessaloniki 1902 - 1963 Moscow) when he wrote to his friends from the prison-infirmary:
... Being captured is beside the point:
The point is not to surrender...!

[Sugarlump]

I have thought about this in depth, at several points in my dialysis career.
A decision to stop treatment (which is yours alone to make) should not be taken lightly but if on balance, the quality of life you are achieving is not enough (and we can only decide that ourselves)
we should be supported through our decision to stop.
We actually have a designated End of Life nurse at our main unit.

I think I would find a hospice place and move in their so that I could be as comfortable as possible.
Make sure my affairs were in order as much as possible and write down my wishes as well.

This is a subject most people don't like to talk about but I think it should be possible to be in control of your treatment and to have some dignity at the end.
Our choices and our measure of the quality of our lives should be respected.

For me, it is not dialysis at any price but only if I can achieve a reasonable quality of life.
My thoughts are with you 

[Michael Murphy]

I find the never ending treadmill of dialysis very depressing.  I have learned to fret about dialysis one week at a time.  Every Friday I celebAte being Done and loudly announce I won't be coming back this week.  This seem to give me a feeling of closure and completion.  Nexts week is next weeks problem.  The other thing I focus on is Dialysis is about 18 hours a week for me( set up, treatment, holding) that leaves me 150 hours a week to have a life.  This disease would depress a saint,  I find it important to focus on goals a week at at a time and how important the rest of my time is.good luck I hope you find a way to deal with this, there is joy to be had in this world and I hope you can find a share of it.

[Alex C.]

Since my kidney affliction is hereditary, I have family history concerning ancestors who died of "Bright's disease", and a fairly vivid recollection of my grandfather's death from kidney failure in the late 1940's written by my grandmother to my mother when her kidneys failed. She also mentioned that my grandfather's father himself died in his late 40's from "Bright's disease" (probably about 1915), which left his family destitute.

No, as crappy as living on dialysis may be, it's better than the alternative.

[Simon Dog]

There must be something wrong with me, since this dialysis thing has not caused any depression - and I know it should.

BUT... the only thing that kept me undepressed when I was in-center was the fact that my doc was working to get me set up for home treatment (I chose to delay training until I was off the cath and on the fistula).

[Sugarlump]

Home dialysis is much better at keeping control of your treatment and doing it when you want...
I try not to think about the future too much ... because it depresses me too much.
I cope only because I have really good support.

[kristina]

Home dialysis is much better at keeping control of your treatment and doing it when you want...
I try not to think about the future too much ... because it depresses me too much.
I cope only because I have really good support.

Well put Sugar!
Support is most important !
I can well imagine that without support dialysis-life could become extremely difficult ...
Best wishes from Kristina. 

[OlManRivah]

I treat Dialysis like going to work.  It doesn't depress me at all.  Anyone that tells me it depresses them, I say look around, there's a lot of folks worse off!   

[cassandra]

I treat Dialysis like going to work.  It doesn't depress me at all.  Anyone that tells me it depresses them, I say look around, there's a lot of folks worse off!   

It was my psych woman who asked me if it was a good idea to see it like that cos it comes close to making people feel guilty about feeling depressed about 'just' dialysis. Besides that I know very few people who 'only' are depressed because of 'only' dialysis

[kristina]

I treat Dialysis like going to work.  It doesn't depress me at all.  Anyone that tells me it depresses them, I say look around, there's a lot of folks worse off!   

It was my psych woman who asked me if it was a good idea to see it like that cos it comes close to making people feel guilty about feeling depressed about 'just' dialysis. Besides that I know very few people who 'only' are depressed because of 'only' dialysis

Hello cassandra,
It is interesting what the "psych woman" told you and being depressed about dialysis is rarely due to "only" one point,
because the start of dialysis involves a complete change of life-style with a new routine coming in to play a most important part...
I would be interested to find out what else the "psych woman" mentioned about coping mentally with dialysis?
Best wishes from Kristina. 

[Michael Murphy]

Actually very much like work.  Plus since I am on dialysis and 64 put in for Social Securiy Disability, so I also get paid for Dialysis.  When you get right down to it, it reminds me of being 20 and looking forward to working for the next fourty five years.   Besides its Friday and I am done wit dialysis for this week.

[casper2636]

Thanks, all, for your support. I guess I'm thinking about dialysis the wrong way. I'm just not sure what I feel (you'd think after 5 years I would!).

I know that, mentally, I go to treatments kicking and screaming. I just can't figure out if I'm kicking and screaming to stay alive, or to let go. For now, I'm just taking it one day at a time, one breath at a time.

[kristina]

                                                       

  ... and all the best wishes from Kristina ... 

[Sugarlump]

Thanks, all, for your support. I guess I'm thinking about dialysis the wrong way. I'm just not sure what I feel (you'd think after 5 years I would!).

I know that, mentally, I go to treatments kicking and screaming. I just can't figure out if I'm kicking and screaming to stay alive, or to let go. For now, I'm just taking it one day at a time, one breath at a time.

Sometimes we have to get angry, to grieve over the effect of dialysis, the lack of control over what is happening and the sheer unfairness of it all, before we can pass into acceptance.

I clearly remember the dragging myself in kicking and screaming to dialysis phase, I would plan escaping, getting in my car and driving into the sunrise on a dialysis morning... ( it's a coping mechanism)
As you say. take it one session at a time... and make the most of your non-dialysis days. Be gentle on yourself 

[Athena]

Thanks, all, for your support. I guess I'm thinking about dialysis the wrong way. I'm just not sure what I feel (you'd think after 5 years I would!).

I know that, mentally, I go to treatments kicking and screaming. I just can't figure out if I'm kicking and screaming to stay alive, or to let go. For now, I'm just taking it one day at a time, one breath at a time.

I think we all pretty much do that Caspar, even if we're not on dialysis. I am always kicking and screaming to get my next lab tests done and practically feel like I only really live in between those dreaded times. None of us want to be doing this, but we just somehow find our little coping mechanisms that get us through each day. I also tend to avoid thinking of the future & find that just living each day is the best strategy of coping.

Do you have little pleasures & joys that help you get through each day?

[cassandra]

                       



Lots of love, strength, and luck to everybody, Cas

[irvinsen5]

I treat Dialysis like going to work.  It doesn't depress me at all.  Anyone that tells me it depresses them, I say look around, there's a lot of folks worse off!   

That's a brilliant way of looking at it!