Rant about stopping dialysis

[Adam_W]

  Several times in the last year, the issue of choosing to stop dialysis has come up (not specifically me stopping, but simply hypothetical situations) between me and family/friends. I was telling my mother about how some countries in Europe where the police will come and get you if you don't show up for dialysis. My mother has always been adamant that I should NEVER choose to stop dialysis. She has said openly that she doesn't give a plop about anyone else, but if I stopped dialysis, I would be selfish and heartless. She has actually said that if I chose to stop, that it would be like I was "slapping her in the face and saying I hate her". I'm ranting because even though I love my mother dearly, she seems to be coming off as the selfish one, and she obviously doesn't understand fully what dialysis patients go through. I'm not mad at her directly, because I know she really does love me, but I feel like she's trying to strip away my right to stop dialysis if I choose. Others may disagree (no flaming please), but I do NOT think stopping dialysis is "committing suicide", but rather stopping life support and dying NATURALLY. Fortunately in my case, I have no intention of stopping dialysis any time soon, but we all know there are people who are literally in agony every day, and stopping dialysis may be the only way they can end their suffering. I just needed to get that out.

[GuyIncognito]

 I think it's healthy to explore the quality of life argument, I personally have thought about stopping dialysis on a number of occasions even though I never truly would., however someone who has never experienced dialysis has no understanding of the unbearable weight that it can put on our shoulders sometimes.. just the fact that this is your life from now on is enough to bring the toughest person to there knees and thats not even taking into consideration the physical aspects.

[devon]

It's not easy for others to place themselves in our shoes. They don't fit!

This question of starting, stopping, continuing, repeating... and whatever... dialysis is a personal one. It's a "quality of life" decision.

To me, the decision to stop may come. I haven't started. But I'm starting because I have much to live for. I have a son who needs my attention and presence. He's lost everyone in his life but me and I will do all I can to stay alive and support him as long as I can.

HOWEVER... and that's a BIG however... the serious question of whether or not to start dialysis was one I approached very carefully. I can still opt out. But I decided to take the steps into that world. I don't know if my mind will change later.

I realize dialysis is a treatment and not a cure. A transplant, it seems, may be perfect for some but more problems for others. The option to forego a transplant is also possible. My brother has volunteered one of his. But the question is: Do I have it in me to accept it and place him in the position of enduring the procedure? I don't know. I don't have to answer that question... yet.

All this is a very long way of saying: "It's YOUR decision. Not your parent's!" It's not suicide to stop a life-extending treatment, IMHO. She shouldn't be placing such an additional burden on you with her guilt.

The other side is that she obviously loves you and her protests are proof of that. You may not agree on the topic but you probably agree on the love between you. If you didn't love her, you wouldn't be effected by her protests, would you? If she didn't love you, she wouldn't be upset at the thought of you stopping treatment, would she? So, make that point so both of you can agree on that. After that, the other questions will be easier to discuss.

Too often "arguements" are not really about what's being discussed but the feelings behind the topic! Get an agreement about your mutual caring and love for each other and the issue of treatment can be discussed without this underlying tension.

my .02    and thanks for raising this important question. It made me think.

[Sluff]

This subject has come up many times and although it is definitely up for debate, I believe as you do Adam. I am not on dialysis and I strongly believe that it is a choice that only someone on dialysis can make objectively.

[tweetykiss]

My husband hates it so I will not lie.  But what keeps him doing it as he tells me that it is me he wants to live for.  Now he has three live donors (his brothers) and really a fourth since I am willing as well and we have the same blood type but he would rather take from one of his brothers since the match will be much closer.  But he just does not want to take the risk and the thing with the anti-rejection meds.  He also is afraid if his transplant ever fails, he may not be able to handle it.  I tell him people will give eye-teeth for a kidney to get off the dialysis but then it is his call and I cannot dictate to him.  He also says what helps him get through it is the staff there is very good to him and they are friendly to him.

[kitkatz]

I think is would be the patient's decision to stop dialysis.  No one can dictate your life. You need to be the decision maker.

[okarol]

I think I would respond in a very emotional way if my loved one said they wanted to stop dialysis. Adam, your mom doesn't want to lose you, she brought you into this world and a driving force in most parent's lives is to hope their child has a long, and fulfilling life (yes, I know, the "fulfilling" part can be debated.) I think her reaction might be one of fear and desperation, and I can see why. I don't mean to take anything away from your feelings on the matter, I just can relate from your mother's perspective.
This reminds me of another thread about ending dialysis http://ihatedialysis.com/forum/index.php?topic=2037.0 - it's worth reading.
Ultimately I would respect the choice of a patient to stop life support. It just would be very hard to do if it were my child.

[kellyt]

I think a parent's worst nightmare is to outlive their child(ren).    And although I agree she can't "tell you what to do or how to live your life",  just try to be understanding of her position.
 
Even though I've never met you, I hope you don't stop dialysis.  You would be missed at IHD.  I hope you have the strength to go on and on!   

[Joe Paul]

I feel that if the person on dialysis is at peace with deciding to quit, others are being selfish for wanting them to carry on. Thats so long as they are mentally stable, and are just not going through a period of depression 

[ODAT]

I guess you could consider 'not starting' dialysis the same as stopping. We were/are in this position with my mom. She hasn't started dialysis yet, but is going to have the fistula (or graft) surgery in a few months. The doctor asked her at the last visit 'so you want to go forward?" Mom wasn't quite sure what he was asking, but I knew and told him 'yes, mom has already decided to do dialysis.' Don't know why he had to ask her yet again. Just brings her around to not feeling 100% about doing it.

Mom at times did say she didn't want to do it. She knows the consequences. I just hope that once she starts she doesn't give up too soon. I've seen around here that it takes time to start feeling better.

I have a question - would you live as long stopping dialysis as if you never started? I don't think so. If you don't start dialysis, does the doc give you special meds to assist the symptoms that will eventually come about? I've read that people only live weeks when they stop dialysis. As Kitkatz once said 'it's all a crap shoot.'

Our main concern in this dialysis world is that we are all well-informed of every possible outcome. That's why I'm so thankful for the people and frankness of IHD. 

[stauffenberg]

It might clarify the issue to imagine that someone has a pet dog which is suffering constant and excruciating pain and misery, but the owner refuses to have the dog put down because he says he would feel lonely without it.  In that case it is clear that the owner was being selfish in not putting the dog out of its misery.  So why is it that if a person is living a life of misery on dialysis, the people close to that person get to blame him for being selfish if he prefers to die because that deprives the others of a 'pet' they want to keep around so as not to be lonely?  There is no greater selfishness than forcing someone else by emotional blackmail to continue living a hideous life because you want their company!

Statistics show that about one in five dialysis patients die because of voluntary withdrawal from dialysis.  Since these patients need dialysis as part of their normal regimen to stay alive and know they need this to stay alive, when they withdraw from dialysis it is just like a healthy person voluntarily withdrawing from eating or drinking or breathing, which would certaintly be called suicide.  What confuses things is that people use the word 'suicide' as though it could only have a pejorative sense, when in fact many cultures view suicide in the proper circumstances as a rational or even heroic choice.

[Joe Paul]

Mom at times did say she didn't want to do it. She knows the consequences. I just hope that once she starts she doesn't give up too soon. I've seen around here that it takes time to start feeling better.

Just keep in mind," feeling better" does not mean she will be the same person you knew before dialysis. Sure dialysis keeps us alive, but its no walk in the park either. You have to have it in your mind to do it, to want to live like this, thats half the battle.
Sorry for taking this off topic, just wanted to say what was on my mind.

[Slywalker]

It might clarify the issue to imagine that someone has a pet dog which is suffering constant and excruciating pain and misery, but the owner refuses to have the dog put down because he says he would feel lonely without it. In that case it is clear that the owner was being selfish in not putting the dog out of its misery. So why is it that if a person is living a life of misery on dialysis, the people close to that person get to blame him for being selfish if he prefers to die because that deprives the others of a 'pet' they want to keep around so as not to be lonely? There is no greater selfishness than forcing someone else by emotional blackmail to continue living a hideous life because you want their company!

Statistics show that about one in five dialysis patients die because of voluntary withdrawal from dialysis. Since these patients need dialysis as part of their normal regimen to stay alive and know they need this to stay alive, when they withdraw from dialysis it is just like a healthy person voluntarily withdrawing from eating or drinking or breathing, which would certaintly be called suicide. What confuses things is that people use the word 'suicide' as though it could only have a pejorative sense, when in fact many cultures view suicide in the proper circumstances as a rational or even heroic choice.

Sorry - Can't agree with Stauffenberg comparing a human life to a dog's life.

This subject was debated quite a few months ago on another board I read.  At that time is was someone's parent refusing dialysis treatment and the family was very upset.  Unfortunately the person changed their mind but it was too late and they ended up dying.

I do feel that people should be able to make this decision - but it needs to be with "eyes wide open" and sort of informed consent.  From what I understand when you stop dialysis the toxins start building pretty quickly and the quality of life may be a non-existent issue because of the sickness that may start quickly. 

I used to say that I would never do chemotherapy and put my body through that hell - until, that is, when I was diagnosed with breast cancer when I was 44.  Well, because of my age and kids still at home, I opted for a treatment I said I would never do. 

A lot does depend on circumstances and individuals - as does life in general.

Take care
Sandyb


EDITED: Fixed quote tag error - Sluff/ Admin

[Ohio Buckeye]

Being someone who had a "code blue" in the hospital in December, I am very grateful for being alive.
I pray as long as I have purpose and can make a difference I will be ab le to survive.
If my life and suffering were too hard I'd probably want to quit dialysis but I don't think my boys could
ever accept it.
Funny how I always said I only wanted to die once and I've already died once.

[Sunny]

        I agree that it depends on the individual. What may be right for one, may not be for another. It's quite a step to take in agreeing to live via dialysis for a lifetime. It's at least worth trying for a while, but what if it doesn't work well for an individual? Plenty of people believe in an afterlife and may not think prolonging life here, at any cost, is a reasonable option. Is it fair for loved ones to insist on prolonging life simply because they are not ready to live without you? They're not the ones living on dialysis and they don't know what it's like. However, it would be most important to make sure people aren't choosing to stop treatment because of depression and feelings of hopelessness.
       As a mother myself, I know I would want my son or daughter to live and I can see why your mother fights so hard to get you to continue with dialysis. I know I would. On the other hand, it must be hard for you sometimes dealing with the day to day dialysis issues. I wish I could make it all go away for you and that your kidneys would be normal. I'll bet your mother does too. But since that can't happen, I sure hope that dialysis continues to do good things for you.

[stauffenberg]

I think it is perfectly rational for patients to stop dialysis -- which usually leads to death in about 10 days -- if they are motivated by feelings of hopelessness, as long as these feelings are based on a logical recognition of the actual hopelessness of the situation, which can be very real indeed on dialysis.  Justified despair and depression are not mental states which make suicide irrational; on the contrary, it would be irrational to keep living if all life brought you was a constant feeling of despair, depression, and hopelessness because of its real and inescapable horrors.  There is irrational depression which occurs when people feel constantly sad even though there is no objectively real problem in their lives sufficient to explain this degree of sadness, but in dialysis, the reason for feeling sad all time is not imaginary, but real, so the motivation for suicide is not mental illness, but a completely sensible response to incurable misery.

Of course in my example I did not compare human life to the life of a dog, but rather, compared the selfishness in wanting a dog to continue living and suffering in order to keep you company with the selfishness of wanting a human to continue living and suffering for the same reason.

[fluffy]

its a  tough question, and i think about it often. the one thing that keeps me going is that i dont want to leave the people i care about

[George Jung]

Adam, I agree with your point of view.  You mothers attitude does sound to be a selfish one.  People, parents in particular, have trouble with attachment, which is a real, selfish, attitude.  It's not the type of selfishness as not wanting to share your ice cream but it is selfish none the less.  Luckily your mom doesn't have to understand what renal failure is and your problem set is one that can be worked out through love and understanding. 

Sorry but thinking anyone here would compare human life to that of a dog cracks me up.... 

[The Wife]

The first time my partner told me he didn't think he could do dialysis any longer, I didn't know what to say.  Everything he said had merit to it.  Of course I don't want him to stop but if his suffering is only to make me happy, I don't want that either.  It's his choice and if he ever does decide to stop, it'll be extremely hard to take.   But I do support whatever decision he makes. 

We could talk about how animals are put down when they suffer and humans aren't, or ask ourselves what the purpose is in staying alive by artificial means if a transplant doesn't take place, or why we are afraid to let go of life, be it ourselves, or a loved one.

When we ask ourselves if living or dying naturally is the right way to go, we could look at any health condition that requires treatment.  If a diabetic takes insulin, is that living a natural way?  What about someone with a heart condition who takes nitro?  Isn't that drug keeping someone artificially alive when the need to pop the pill to save a life arises?  

If it were my decision to make, I don't know what I'd do.   I can't really answer unless it was my body, my suffering, and my death or life to face.  I do know one thing.  When my partner found out that he was probably heading for dialysis, he said he'd rather die than live by the use of a machine.  When the moment arrived, he ended up choosing life with dialysis instead of death.  I asked him about this and what he told me was that we really don't know what we'll choose until the moment of choice arrives.

 

[Adam_W]

When I first started dialysis, it happened suddenly and there were so many things I didn't know or understand. At the time, I basically thought that we had to follow the doctor's treatment, and there was no choice, and if I missed a treatment I would be dragged to the dialysis centre. That's probably a good thing in my case, though. If I had known at that time that I had a choice of not doing dialysis, I probably would have refused treatment. Now, a year later, I've come such a long way. I'm on home dialysis, I'm in control, I feel great (usually), and despite the problems I'm still having, I'm glad I did start "that awful sounding treatment" a year ago. It still surprises a lot of people that I'm not even ready for a transplant yet. I hate that machine next to my bed that I have to see and touch and sleep next to every day of the week, but at the same time, I have a weird kind of love for it, because that big noisy thing in my bedroom allows me to live. Maybe one day I will give transplant a try, but until then, I won't be stopping dialysis anytime soon. Like I said in my original post, I'm not mad directly at my mom, but simply some of the things she was saying. I know she loves me very much, and I love her equally. She still sometimes has a hard time dealing with with what happened to me a year ago. Well, anyway, thanks for all the comments. This has been an interesting discussion.

Adam

[Sluff]

"Don't live for dialysis, use dialysis to LIVE"
Great quote Adam.

 
 
 

[okarol]

Having children's in of itself is a selfish act.

If the roles were reversed, and the patient could put themselves in the place of the loved ones who feel powerless to help them, I wonder if they wouldn't feel the same way.

[Psim]

If the roles were reversed, and the patient could put themselves in the place of the loved ones who feel powerless to help them, I wonder if they wouldn't feel the same way.

I'm sure I would feel the same. You can call it selfish or whatever you want, but if my partner, my brother or sister or a close friend were considering letting themselves die, I would do anything I could to persuade them that life was worth living, and to try to help make their lives worth living in any way I could.

At the same time, from my point of view as a patient, knowing that I can decide to stop if it gets too hard helps me face each new challenge. Telling yourself that you have a choice can make it easier to keep on.

[The Wife]

When you love someone, you do say something in hopes that it will encourage them to continue with life.  I tried to put myself in the position of someone on dialysis.  Of course, I really can't but if I were this position, I would live for my loved ones until the suffering became greater than the love I have for them.

When my mom was ill and suffering, we all wanted her to live, but after a lengthy and painful illness, we found acceptance in letting her go. 

[skyedogrocks]

I know it seems selfish, but your Mom has your best interest at heart.  Yes, it is your life and your body, you have every right to feel every emotion that you do.

As caregivers, we can never know what it physically feels like for you to go through dialysis, but we do know what it feels like emotionally.  I hurt for my husband each day.  It kills me to see him doing this, but he wants to live.  He is extremely heroic in my eyes.  However, if he decided to give up, I would be so mad at him.  Just as he needs me in his life, I need him also.  I don't want him to give up, I love him too much, I need him too much to do that.  He tells me many times that I am the reason he never gave up, but he is the reason.  He is such an amazing man, so strong. 

Call it selfishness, but I see it as pure love.