I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: casper2636 on June 27, 2015, 06:03:22 AM
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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....
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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....
:flower;
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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.
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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... :grouphug;
... 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. :grouphug;
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Hang in there. Look around! There's a lot of folks worse off than us. . . . :beer1;
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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! :clap;
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Keep up the fight casper ........... Like your signature says .. here is a smile for you. :waving;
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".....
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Hang in there. Look around! There's a lot of folks worse off than us. . . . :beer1;
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.
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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. :grouphug;
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...!
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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 :cuddle;
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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.
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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.
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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).
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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.
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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. :grouphug;
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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! :beer1;
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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! :beer1;
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
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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! :beer1;
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. :grouphug;
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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.
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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.
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:grouphug; :grouphug; :grouphug;
:grouphug;... and all the best wishes from Kristina ... :grouphug;
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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 :cuddle;
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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?
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:grouphug; :grouphug;
Lots of love, strength, and luck to everybody, Cas
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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! :beer1;
That's a brilliant way of looking at it!
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I guess I am like Simon. I never became depressed about this disease, possibly because I was convinced I had something for which there was no treatment. As to how I approach it, it is much like getting ready for a ballgame I would be in. I spend a little time before I leave to go to each session preparing mentally for THAT session, and not thinking about the next. One day at a time, just like one game at a time or one inning at a time, one play at a time. And I do regard it the same way as going to work. Those 5-6 hours are the price I pay for having a life with my family the rest of the week. Another thing I have always felt is that ending your life seems to be the easy way out. You no longer have to contend with whatever the reason you make this decision, but your family and friends have to contend with your loss on a daily basis.
Sp mod Cas
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I just started reading through this thread, which seems like it was started a while ago. I find it interesting how different people view D and depression.
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Sorry- typing on my phone and accidentally posted incomplete message. I feel like unless you have experience deprsssion you cannot fathom what it feels like. I have had recurrent depressisonnin my life (prob caused partly by trauma of having this as a kid and side effects of prensione etc) and so perhaps I am overly sensitive on this issue. Somebody posted earlier saying how other people have it far worse than needing D, as if that revelation should pull someone out of depression and “feeling sorry for the self”. Comparing pain is not helpful to anyone, we all have our own pain threshold. And ppl with depression already feel guilty so adding on extra guilt is not going to fix them.
I do understand the huge repurcjssions on loved ones of someone choosing to stop treatment thus ending their life. But I also respectfully refute your claim that it is “the easy way out”. There is nothing easy about lit and I would never stand in judgement of someone who makes that choice.
Not everyone who gets sick becomes depressed but those who do are not doing something wrong- that is just how their brain responds to such a stressful and life changing event. Being positive and thinking of it as a job and living one day at a time is a great attitude to adopt and I’m so happy it works for you but it won’t snap somebody out of a true depression.
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There are many many levels of 'Depression' ranging from barely a slight discomfort to full blwn suicidal depression. I do not know where the dividing line is where/when a psychologist would make the determination that a particular person is 'Clinically Depressed' needing treatment/medication.
I don't doubt that everyone diagnosed with renal failure has some level od depression. Whether that level for that person is advanced enough to need treatment/medication/intervention, all depends on that person.
Most people with severe depression don't even realize yet that they are depressed. And you are right, you just cannot tell someone to 'snap out of it'. Depression doesn't work like that. Finding something else to occupy your mind, paying attention to something else, concentrating on a distraction so as not to focus on the depressive matter as much, finding the other things that give your life value, for me is my key to managing.
Like Dialysis mornings, just before leaving the house I take a generic Zanex. My needle-phobia jacks my barely controlled blood pressure. The Zanex brings at back to my normal. I don't notice any other signs that I have taken the medication, only that BP. I don't take the med any other day. Don't need it. This works for me.
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We have a lady who always reminds the techs to let her know about 30 minutes before they are going to call her so she can take her medication for anxiety. No one has said any of this is easy, nor made any suggestion that depression is not a serious condition. There is also no denying the old saying that suicide is a permanent solution to a temporary problem, the kidney failure is not temporary, but the lack of hope very well could be with proper treatment. Depression is a very real medical condition and can be treated.
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Charlie- I think that’s awesome that u are able todo hemo w a needle phobia, I’m scared of needles from traumatic IVs and stuff I had as a kid so I’m worried I won’t be able to handle hemo. Idk, maybe I will try PD.
GA Dawg- point taken. I wasn’t trying to be contentious, the statement “easy way out” just bothered me. I do not think that stopping a life supportive treatment like dialysis is the same as suicide, but that is just my opinion. While I agree everything else should be tried first, if someone’s quality of life is poor and not getting any better I do believe that they have the right to say “enough” and go out on their own terms with dignity and no guilt. While I hope it never comes to that, the knowledge that I could stop D if it ever got to be too unbearable and the good no longer outweighed the bad gives me some comfort. Maybe that’s not a healthy way to look at it, idk.
Anyway, I appreciate reading about how everyone on here is dealing with living w kidney failure. It does give some hope that it gets a little easier with time, though I hope I get a sucesful transplant sooner rather than later and never have to find that out.
Take it easy and have a good week.
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On the whole, looking at treatment one treatment at a time is a lot easier than looking at it for a lifetime. I figure if it gets really bad then I can just stop, which is per
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On the whole, looking at treatment one treatment at a time is a lot easier than looking at it for a lifetime. I figure if it gets really bad then I can just stop, which is permanent. Compared with death, it's not so bad. I try to look at it as a kind of spa treatment. You know, getting all the toxins out and being restored from all the "bad" foods I've eaten and medicines I've taken. Just cleaned until the next time.🤗
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You DO realize that dialysis removes only 15% of the toxins leaving a full 85% to wreak havoc. It keeps us alive, barely, but not healthy.
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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. :grouphug;
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...!
P.S. I actually started to learn and study the pianoforte & learn how to read & interpret music after suffering a stroke and at the time it was meant as an effort to rehabilitate, especially since the stroke left me half-sided paralyzed for a very long time ... and learning how to use my fingers in order to learn how to play the pianoforte and learn how to read music was very helpful and inspiring ... and ... then my health and strengths got worse again and as a result I let my piano-playing & learning "slide" a bit and during my pre-dialysis-time I became extremely weak again, but I made a conscious huge effort to continue learning how to play the piano etc. in the hope to prevent myself from becoming too sad about this dreadful ESRF- situation...
Best wishes from Kristina. :grouphug;
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You DO realize that dialysis removes only 15% of the toxins leaving a full 85% to wreak havoc. It keeps us alive, barely, but not healthy.
What you say is very true, K&S, but I have also read that the more we adhere to the "rules of dialysis" i.e. liquid restrictions and eating a healthy kidney-friendly-diet, the better our chances, to keep our body and soul as healthy as is possible during the time we need dialysis ... and as strong as is possible for a possible transplant, whenever it may come along ... :grouphug;
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You DO realize that dialysis removes only 15% of the toxins leaving a full 85% to wreak havoc. It keeps us alive, barely, but not healthy.
I think (but am not certain) that applies to HD only not PD.
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I think (but am not certain) that applies to HD only not PD.
When I mentioned it in the presence of my neph. she didn't correct me or specify which form of D. It was told to me by a PD person.
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Our PD Nurse has said that PD varies (depends on the strength of the dialysate and the number of cycles per day), but is targeted to be roughly 15% of what healthy kidneys can do. Humans can do very well with just 30% kidney function, so they start dialysis when kidneys get down to about 15% so that the combined 15% from dialysis and residual kidney function is 'adequate'. But their definition of 'adequate' is based on studies of mortality, not robust health, and then many patients lose that residual function as well.
I asked why can't we target a higher value by using stronger dialysate and they said that the stronger the juice, the quicker the peritoneal lining stops working as a 'filter'. Shucks.
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Ain't no free lunch :o
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Naynay- I do agree that people should have the right to stop dialysis. We had an older lady, I could not even estimate her age, in a nursing home where they obviously were not caring for her properly as she had bed sores. That made it absolute torture on her to sit in a chair for three and a half hours, and she would cry out the entire time, beg the techs for help, and pray aloud. The nurses called the nursing home on more than one occassion to ask if she had any sores and were always told no. Finally, they rolled her over to check for themselves and she had bad bedsores. Anyway, listening to the pain she was in, one could not help but wonder if she would make a different choice if she could. You could not help feeling sorry for her, though I should add that none of us acquitted ourselves very well in her case. Most of us just pushed the earphones in a little deeper and turned up the volume. She went into the hospital, and on her very first treatment after getting out, did not make it through the treatment. While no one complained or anything else, I suppose one day we may have to answer for not offering her more help, more understanding, or more kindness.. It is something you never get used to seeing, and I hope I never do. Life is too precious, and no one should get used to seeing it end, even though it is everyones eventuality.
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My mother was on hemodialysis for 4 brave years; it was very hard on her physically. Her other health problems made dialysis even more miserable- she was nearly blind and in a wheelchair. One day she said she'd had enough; she never went back to dialysis. We moved her hospital bed to the living room and she held court for about a week. It was a constant stream of people visiting, bringing food, hanging out and she was in heaven. She always loved to entertain. Eventually I think her pain meds built up in her system and she became sleepy. The party continued and eventually she stopped breathing and was gone. My family has no regrets, it was her decision to make. She was 74.
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I agree with that people must always be allowed to stop medical treatment. But it's not as fair as it sounds. It's like GA's story with the lady who just didn't receive enough care. And that care can be physical and psychological. After having survived yet another pointless 'discussion' with a healthy person, about 'euthanesia', I watch this clip from Liz Car
https://www.youtube.com/watch?v=sRE6Zwq62vc&sns=em
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Cupcake, thanks for sharing your mom's story. Every life is temporary, and not every life has to (or gets to) decide when to stop. My hubby likes to say that he feels empowered because he has this choice, but I think I'd struggle with it myself.
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I agree with that people must always be allowed to stop medical treatment. But it's not as fair as it sounds. It's like GA's story with the lady who just didn't receive enough care. And that care can be physical and psychological. After having survived yet another pointless 'discussion' with a healthy person, about 'euthanesia', I watch this clip from Liz Car
https://www.youtube.com/watch?v=sRE6Zwq62vc&sns=em
Liz Car's speech certainly made me think about a lot of things.
1. She speaks of the resentment and hopelessness one can feel when you know that the government can control your living (dialysis, anyone?), so why give them the power to assist in your dying? I can understand that.
2. I agree with her that there would be less push for assisted dying if there were more resources and support available to those who are disabled or chronically ill (like better dialysis treatments).
3. Her story about the disabled baroness on the ventilator with a chest infection and the DNR in her file that shouldn't have been there...that was chilling. That a doctor would assume that's what she wanted is horrifying.
4. The idea of coercion, especially an unspoken society burden, is heartbreaking.
5. "It's either a right for everyone, or it's a right for no one." I had not thought about the repercussions of that.
I got only to the 21 minute mark before having to stop, but I will watch the rest as soon as I get the chance.
While I realize I am probably not in the position to disagree, I do, anyway, with her assertion that too many people equate those with disabilities to those who are dying of terminal illness. I'm not sure that is really true. I know that has never occurred to me, but I guess I can't speak for everyone.
So thank you for posting this. I am not entirely sure where stopping dialysis fits into Liz Car's position, but I'd really like to ask her! I'd love to know what she has to say about this particular scenario.
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In many places where it began as euthanasia, and by truly well intentioned people, it morphed into very different things. I believe it is the Netherlands that began with physician assisted suicide, but then it changed to the point where a person could be declared not capable of making their own decisions and a family member could request euthanasia for them. From that point, it was not far to children, wanting an inheritance rather than medical care using their parents savings, began going to doctors, even physician shopping, in order to end the life of a parent with Alzheimers or a similar ailment. Then it gradually changed into older people, or sick people, having a responsibility to go ahead and die so as not to be a burden. It seems I remember a US politician getting into troouble once for saying older people had a responsibility to die so as not to be a burden. That is why I am not for physician assisted suicide, though I think there is a difference in that and stopping a treatment. I have known cancer patients who, because of the severity of chemo on them, decided to not have more treatments. That I find far different.