Rant about stopping dialysis

[skyedogrocks]

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. 

I'm sure she doesn't see this as luck.  Most parents would switch places in an instant with their children, rather than seeing them hurt and suffering.

[highlite36]

I started dialysis in my late teens and early twenties.  I was also transplanted for a few years before losing that kidney.  I'm glad I've made the decision to dialyze....But I gotta tell you, as a young person going through this, it's quite difficult to have parents watch me suffer in this way.  I understand that they love me unconditionally and have ALWAYS been the greatest supporters of all of the things that I do. However, they also have the strange and awful ability to SMOTHER me.  My mother and I had a conversation the other day......she believes that I am too sick to drive and therefore thinks that I should move in with her so she can "take care of me" properly.  It's great to have her support, but it's hard to emotionally deal with her enabling me to be "sick."  The pity is killing me.....  I've always seen myself as an independent and strong young woman.....  The help is appreciated, but there is a time and a place for it......

[fluffy]

The way i see it either way everyone is here for a reason once we serve our purpose we die regardless of dialysis, and we move on. i dunno where tho,and thats the scary part

[petey]

Marvin says the thought of stopping dialysis has never crossed his mind (he's starting his 13th year on hemo).  He says that's a death sentence, and he doesn't want to die just yet.  As his spouse and caregiver, I (like skyedogrocks) would be mad at him if he wanted to stop.  If he does get to the point when he wants to stop, I will beg and plead with him to keep going.  I cannot imagine my life without him.  Sometimes when I'm finding his glasses or getting his socks out of the drawer, I will jokingly say to him, "Where would you be without me?" and he answers, "Dead."  The truth is, I'd be nothing without him, too.  He's the "sick" one, but he's the reason why I get up every morning and keep plugging along.  This year, we will celebrate our 22nd wedding anniversary, but, even if we're married for 122 years before one of us dies, it won't be enough time together.  EVERY DAY with him is good (not always easy with this disease -- but still very, very good).  Dialysis gives us more days together.

[Sluff]

Marvin says the thought of stopping dialysis has never crossed his mind (he's starting his 13th year on hemo).  He says that's a death sentence, and he doesn't want to die just yet.  As his spouse and caregiver, I (like skyedogrocks) would be mad at him if he wanted to stop.  If he does get to the point when he wants to stop, I will beg and plead with him to keep going.  I cannot imagine my life without him.  Sometimes when I'm finding his glasses or getting his socks out of the drawer, I will jokingly say to him, "Where would you be without me?" and he answers, "Dead."  The truth is, I'd be nothing without him, too.  He's the "sick" one, but he's the reason why I get up every morning and keep plugging along.  This year, we will celebrate our 22nd wedding anniversary, but, even if we're married for 122 years before one of us dies, it won't be enough time together.  EVERY DAY with him is good (not always easy with this disease -- but still very, very good).  Dialysis gives us more days together.

Excellent post Petey, very touching.

[msawyersw]

Some serious considerations about thinking of stopping dialysis from a dialysis social worker.

The 'what if I gave up, gave in and let nature have its way with me' question.  How can you cope (and help others cope) with thoughts of stopping treatment, or giving up treatment by degrees (skipping treatments, stopping medications, staying in bed, feeling I can't take it anymore so why bother, I'm not skipping my treatments/ medications willfully, I'm not depressed, I'm fed up, etc) )?

1) Try not to divide life into two halves--healthy and sick. Support groups, like your forum, can help you keep your present life in perspective. Try to enjoy time with people who love and support you as you are and limit conversations with those who make you feel helpless and hopeless.  (It is ok to let your treatment team know when their words make you feel bad, by the way.  We may not be aware of your reaction or the impact of our well intended or off the cuff comments.)

2) Look at your present quality of life in concrete terms.  What are you able or not able to do on a daily basis?   Do a mini quality of life assessment.  If you find that you are functioning well overall, but feel lousy, depression may be pulling you down.   

3) If you are not able to do something essential to your absolute quality of life (walking, staying infection free for any period of time, staying out of the ICU most of the time, running out of accesses, having intractable pain, etc), schedule a private conversation with the doctor you trust the most.  Focus on the problem(s) causing you the most suffering.  Maybe you have stated your concerns before.  Do it again. Care providers need to hear it again.

4) Before you give up on treatment, consider being re-evaluated once more.  Perhaps you tried pain management, physical, occupational therapy, rehabilitation, vocational help, counseling for depression, surgery, changes in dialysis, a transplant, different medications before.   If your situation has gotten worse, get re-evaluated before you decide that your problems can't be helped at all.

5) If you absolutely feel you are not being heard, get a second opinion.

6) If depression is causing you to want to give up treatment, get referred to a mental health specialist who can use medications and/or counseling to lessen the pain and give you hope again.   

Finally, please consider using your social worker as a resource.  We may help with transportation and travel, but our specialty really is counseling.  You don't have to talk to your social worker in front of everyone else.  Don't assume we'll consider you suicidal for having thoughts of stopping treatment, either.  A counselor will have heard his/her patients say such things before, and so won't react emotionally, as say, a parent or spouse might. Your social worker can help you evaluate and cope with difficult feelings.

Best wishes,
Marcia Sawyer, LMSW
PS:   At some point in our lives, we will all experience serious illness.  I hope I have learned courage from the courageous people I have know on dialysis.

[stauffenberg]

You left out one vitally important consideration from your otherwise exhaustive inventory above, and that is: You may want to stop dialysis and die because that is by far the most rational option for you; if you have thought it through and come to this conclusion logically, then by all means, don't continue your suffering pointlessly!

[okarol]

What are the risks of stopping kidney dialysis?

Most people who stop kidney dialysis die within a few weeks. Stopping kidney dialysis may force you to confront difficult emotional issues, such as broken relationships, financial issues, or a fear of dying. Facing these issues usually will help you and your family resolve problems. However, the work of resolving problems can be challenging.

If you choose to stop kidney dialysis, you may need the support of a team of end-of-life care professionals, such as a hospice team. You may not wish to have many people involved in your care. If this is the case, allowing others to help may be difficult.

Regardless of whether you choose to continue or stop dialysis treatment, it is important to clearly state your health care decisions through a legal document called an advance directive. An advance directive will guide your treatment and ensure that you receive the medical treatment of your choice.


Deciding whether to stop kidney dialysis   

Reasons to stop kidney dialysis
     
    * Side effects and complications of dialysis make continuing treatment too difficult.
    * You feel that your quality of life on dialysis is not good enough to continue the treatment.
    * You feel you have accomplished most of your life goals.
    * Your physical condition makes transportation to and from a dialysis center difficult, and stopping dialysis will take away this concern.
    * You have struggled with diet restrictions and wish to enjoy the foods dialysis makes you avoid.
    * Your family and loved ones understand and support your decision to stop dialysis treatment.
   
Reasons to continue kidney dialysis

    * You feel better physically on dialysis than you did before dialysis treatment.
    * Dialysis treatment allows you to return to your normal activities.
    * You have reasonable goals that have not yet been met, and you feel that continuing dialysis treatment can help you reach those goals.
    * The improvement of your physical condition on dialysis makes up for any difficulty in receiving the treatment.
    * Diet restrictions have not significantly lessened your quality of life.
    * Your family and loved ones feel you should continue dialysis treatment.

from: Should I Stop Kidney Dialysis? http://body.aol.com/decision-point/should-i-stop-kidney-dialysis/DecisionPoint

[okarol]

Here is a pdf file about this subject from NKF: www.kidney.org/atoz/pdf/StopDialysis.pdf