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Author Topic: Some people should NOT be on Dialysis  (Read 13723 times)
kellyt
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« Reply #25 on: January 09, 2009, 12:21:55 PM »

All I know is when people tell me what they believe is right for me, all I want to know is...are they going to hug my child at night when he misses his mom? Or meet his first girlfriend? Or be there for his first heartbreak? Or pay the bills?  As much as I respect the opinions of my medical team and adore them as people, the bottom line is, none of them can answer yes to those questions. I was not passing judgment on anything anyone did or said. I was simply disturbed by the judgment I felt was being passed on someone else. Yes, it's a difficult situation but it's still not our place to judge or make the decisions for them. If the decision to end her life is to be made, then she has the right to do that if the proper procedures take place.  Even when that happens, it is still a very difficult and emotional time for anyone involved in her life and I just hope we can empathize rather than judge. You are right...I don't know what his life is like and neither does anyone else really.  I certainly didn't mean to offend anyone and I apologize if I did.

But this is precisely what her husband is doing (in my opinion).  He is demanding that dialysis is right for her.  SHE, on the other hand, is saying she wants to stop.  Only she knows what is truly right for her.  She is the patient, she is going through the treatment.  In this particular case she is not insane.

People with cancer decide all the time to stop (or never even start) chemotherapy.  To my knowledge they are not required to undergo psychological evaluation.  Are they?  My father stopped chemo and I don't remember anyone demanding he see a psychologist/psychiatrist.  Then again, he would have told them to shove it up their arse!   :rofl

Believe me, I've met NurseWratchet, been to her center, met some of her patients aand have seen her interacation with them.  They adore her!   :2thumbsup;

And personally I think the word "offend" gets thrown around way too much.  You did not offend me at all.  You have every right to express your thoughts and feelings.   I truly don't know if I've ever really been offended ever.  Grossed out - yes.  Surprised - yes   Shocked - yes.  But offended....no.    :cuddle;
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« Reply #26 on: January 09, 2009, 12:51:18 PM »

In my "not so humble" opinion, this woman was totally within her rights to refuse treatment.  Her hubby shouldn't be yelling at her, no matter what their situation is!  Our fave nursewratchet did exactly what she should've done..send the woman back to her "home".  Until you've walked a mile in their shoes, I say.
Hope you don't see any fallout from this!
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nursewratchet
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« Reply #27 on: January 09, 2009, 12:53:56 PM »

This thread is disturbing. That woman is his wife for God's sake. Who are we to judge how people handle a very personal and difficult situation? People expect him to happily stand by and agree to watch his wife die? You've got to be kidding. Before someone can choose do die by refusing dialysis, they need a psychological exam to rule out depression etc. And even after that, if someone is declared fit to make that choice, of course it is going to gravely affect family members. I don't understand how we can expect a family member to happily go along with a decision to refuse dialysis like it was deciding not to brush their teeth today. Of course he's going to be upset and even more upset by medical staff dismissing his concerns as meaningless even if it ultimately is the patient's choice. We don't know what goes on in his life. We aren't living it every day. From his wife's description, I can guarantee his life is more difficult that most of ours. If it was my son on dialysis and he refused it one day and the staff simply went along with his wishes, I would have done a LOT more than that man did, believe me! Whether or not the man sits by his wife's side every minute is not an indication of anything. We cannot pass judgment. We aren't living in their shoes.
  If he is of legal age, you will have no say so at all.  Legally, patient choice has to be adhered to. 
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« Reply #28 on: January 09, 2009, 01:08:13 PM »


And personally I think the word "offend" gets thrown around way too much. You did not offend me at all. You have every right to express your thoughts and feelings. I truly don't know if I've ever really been offended ever. Grossed out - yes. Surprised - yes Shocked - yes. But offended....no. :cuddle;


Well... I used the word "offend".  From your remark, it sounds like that word is used often on this forum by other people (?). I have no idea what others mean when they use that word but if I am included in your reference to people who 'throws' the word around, this is what I meant when I used the word 'offend':  I apologize if I "aroused resentment or anger or vexation and I also didn't wish to be displeasing to anyone by stating my thoughts. It does appear that I aroused some of that which is the definition of 'offend'.  I used the word because it is exactly what I wanted to express in my apology.  Hope that helps.
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« Reply #29 on: January 09, 2009, 01:12:59 PM »


I hope to God that if I am ever in a situation like that poor woman that my family will give me the dignity to choose how I am treated.
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« Reply #30 on: January 09, 2009, 01:16:47 PM »


I hope to God that if I am ever in a situation like that poor woman that my family will give me the dignity to choose how I am treated.

Me too Okarol. I have a Living Will, Advance Directive and my daughter has Power of Attorney and knows my wishes. I have told her I'll come back and haunt her if she doesn't abide by them.
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nursewratchet
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« Reply #31 on: January 09, 2009, 01:44:31 PM »

If I got offended easily, I couldn't do my job.  No offense taken. :waving;   I'm not having any part of any treatment that I don't want.  My family knows that, and we should all make sure our families know what to do, and NOT to do when the time comes.   :flower;
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Vicki
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« Reply #32 on: January 09, 2009, 10:26:57 PM »

This thread is disturbing. That woman is his wife for God's sake. Who are we to judge how people handle a very personal and difficult situation? People expect him to happily stand by and agree to watch his wife die? You've got to be kidding. Before someone can choose do die by refusing dialysis, they need a psychological exam to rule out depression etc. And even after that, if someone is declared fit to make that choice, of course it is going to gravely affect family members. I don't understand how we can expect a family member to happily go along with a decision to refuse dialysis like it was deciding not to brush their teeth today. Of course he's going to be upset and even more upset by medical staff dismissing his concerns as meaningless even if it ultimately is the patient's choice. We don't know what goes on in his life. We aren't living it every day. From his wife's description, I can guarantee his life is more difficult that most of ours. If it was my son on dialysis and he refused it one day and the staff simply went along with his wishes, I would have done a LOT more than that man did, believe me! Whether or not the man sits by his wife's side every minute is not an indication of anything. We cannot pass judgment. We aren't living in their shoes.

every  person  on  this  planet  has  the  right  to  refuse  medical  treatment  at  any

given  moment,without  testing  for  depression  and  the  like.
how  can  the  professionals  have  any  idea  the  bs  that  patients  endure  with  their  treatment.
walk  a  mile  in  my  shoes then  tell  me  you  would'nt  do  the  same.
ps:  i  have  no  intention  to  stop  my  treatment  cause  i've  got  to  many  important
things  in  life  to  consider  the  thought,least  of  all  to  see  what  my  IHD  family  is  up  to.
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« Reply #33 on: January 09, 2009, 10:40:11 PM »

Good on ya nursewratchet
 :clap; :clap; :thumbup; :thumbup; :clap; :clap;
How dare anyone think they have the right to make anybody have a medical procedure if they don't want to.

 :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik;





every person on this planet has the right to refuse medical treatment at any

given moment,without testing for depression and the like.
how can the professionals have any idea the bs that patients endure with their treatment.
walk a mile in my shoes then tell me you would'nt do the same.




I absolutely agree with you mate
A bit more bloody respect is what is needed
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Wattle
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« Reply #34 on: January 09, 2009, 10:47:15 PM »


I hope to God that if I am ever in a situation like that poor woman that my family will give me the dignity to choose how I am treated.

Me three.

I am offended. By the so called "husband".
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« Reply #35 on: January 09, 2009, 10:49:06 PM »



every  person  on  this  planet  has  the  right  to  refuse  medical  treatment  at  any

given  moment,without  testing  for  depression  and  the  like.
how  can  the  professionals  have  any  idea  the  bs  that  patients  endure  with  their  treatment.
I agree, psychologist and psychiatrist I don't believe in. To me it just a matter of their opinion of what they think how someone is and should feel. Just watch court tv and see two different of these so called doc disagree with each other on the stand.. One dispenses medications while the other just listens to you. Save the money, go to a bar or have a good friend to talk to or find an online forum. People should have the sole right o choose what they want to do in life without having to jump through these modern day loops of "talking about it"
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« Reply #36 on: January 09, 2009, 11:02:37 PM »

Thank you NurseW for what you did for your patient.  I hope I have someone like you by my side someday.
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« Reply #37 on: January 10, 2009, 12:25:07 AM »


This article is about this very issue http://ihatedialysis.com/forum/index.php?topic=11901.0
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« Reply #38 on: January 10, 2009, 01:08:43 AM »

The key issue for me is that the patient who by all accounts is of sound mind (if not body very much :( ) and her wishes were not being respected - specially by someone as close to her or supposedly close and supportive as the husband. Yes, we have questioned the husband's motives - they may simply be "I love you I don't want you to go" or something more sinister/selfish as expressed earlier (social security, etc). Either way I'm not sure it's for us to make that call.. but the key issue is that the person herself said no. We are all the masters of our own lives and destinies.. or should be anyway I feel.. and I just wish people would be allowed to choose form themselves...

This dovetails into a discussion about euthanasia of course which could get rather protracted I feel.

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« Reply #39 on: January 10, 2009, 11:46:20 AM »

Richard, I always like to hear your views.  You see things so clearly.   My Mom was in a nursing home and my step father had complete control of her care.  Mom would have died a few years before she did if her husband hadn't kept requesting treatments for her.  He didn't monetairly benefit from her staying alive; in fact he paid quite a bit to keep her in a private room in a private facility.  He just didn't want to lose her.  We, as her children, knew it would be the best thing to let her just die.  and we were prepared for that.  But, we weren't the ones in control.   The nurses knew how the children felt and were very kind to Mom and us.  They tried to convince my stepdad in his decisions, but he wouldn't listen.  He would just get made at the nurses and us.    Very hard postion for the health care team, the husband and especially the patient. 
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« Reply #40 on: January 10, 2009, 12:01:17 PM »

wouldn't the checks go to the nursing home she lives in? 



Quote
If that were the case John Travolta would be up for manslaugther for refusing his child medicine that would have maybe prevented his death.  It is/was against there religion.

His son WAS on anti-seizure medications, and they do believe in modern medicine- they just do not support  psychiatric drugs
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« Reply #41 on: January 10, 2009, 12:56:49 PM »

wouldn't the checks go to the nursing home she lives in?    Her ss goes to the nursing home, but she has a nice retierment check.  She worked her whole life. 



If that were the case John Travolta would be up for manslaugther for refusing his child medicine that would have maybe prevented his death.  It is/was against there religion.


His son WAS on anti-seizure medications, and they do believe in modern medicine- they just do not support  psychiatric drugs





EDITED:Fixed quote tag error-kitkatz,Moderator
« Last Edit: January 10, 2009, 01:33:46 PM by kitkatz » Logged

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kellyt
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« Reply #42 on: January 10, 2009, 01:03:25 PM »


And personally I think the word "offend" gets thrown around way too much. You did not offend me at all.  You have every right to express your thoughts and feelings.  I truly don't know if I've ever really been offended ever. Grossed out - yes. Surprised - yes Shocked - yes. But offended....no. :cuddle;


Well... I used the word "offend".  From your remark, it sounds like that word is used often on this forum by other people (?). I have no idea what others mean when they use that word but if I am included in your reference to people who 'throws' the word around, this is what I meant when I used the word 'offend':  I apologize if I "aroused resentment or anger or vexation and I also didn't wish to be displeasing to anyone by stating my thoughts. It does appear that I aroused some of that which is the definition of 'offend'.  I used the word because it is exactly what I wanted to express in my apology.  Hope that helps.

 :)   
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« Reply #43 on: January 10, 2009, 10:54:49 PM »

Its a shame the Woman wants to die, and her Husband refuses to let her have her wish. Its good you stuck up for her N.W.  :thumbup;  On the flip side though, I wonder what the commotion does to the other patients in the clinic. Its hard enough sometime to accept the fact that this is our life for now, being dependent on a machine for life, then we have to sit and watch or hear these kinds of dramas unfold. It brings the focus back to the fact, that this could very well be our own fate. I try not to show my emotions, but, as I said, these kinds of dramas get me thinking, as I sit for my 4 hour treatment, with no choice but to endure these mental beatings. I am not feeling sorry for myself, but for Gods sake, I do not think we other patients should have to be put through these type of punishments.
I am now stepping off my soapbox, thanks for listening - J.P.
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« Reply #44 on: January 11, 2009, 03:57:11 AM »

If I were in that woman's condition....How DARE anyone try to prolong my life...especially when all I would have to look forward to more dwindling.
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« Reply #45 on: January 11, 2009, 08:14:12 AM »

I know this may be a little late, but I've been working on my response for a few days. Sorry it's so long, but it's necessary.

The husband has absolutely no legal standing to make any of her decisions at this point! This poor woman has the law completely on her side. In this particular situation, the husband would need to be a Health Care Power of Attorney (HCPA). Being just a plain old Power of Attorney means squat when it comes to medical care. Besides, he would actually have to have the actual original copy of the HCPA in his hands, at the clinic, in order for them to force her to do dialysis that day.  On top of that, he could only take over her medical care when her doctor determines that she is no longer able to make an informed decision for herself--meaning she is not lucid, or is in a vegetative state. Even if she couldn't talk, she can still make decisions as long as she can write or sign (if she's blind). The following was taken from my HCPA document (wording is standard for all HCPAs):

Subject to any specific limitations you include in this document, if your attending physician determines that you have lost the capacity to make an informed decision on a health care matter, the attorney in fact GENERALLY will be authorized by this document to make health care decisions for you to the same extent as you could make those decisions yourself, if you had the capacity to do so. The authority of the attorney in fact to make health care decisions for you GENERALLY will include the authority to give informed consent, to refuse to give informed consent, or to withdraw informed consent to any care, treatment, service, or procedure to maintain, diagnose, or treat a physical or mental condition.

HOWEVER, even if the attorney in fact has general authority to make health care decisions for you under this document, the attorney in fact NEVER will be authorized to do any of the following:

1)   Refuse or withdraw informed consent to life-sustaining treatment, unless your attending physician and one other physician who examines you determine, to a reasonable degree of medical certainty and in accordance with reasonable medical standards, that either of the following applies:
    a.   You are suffering from an irreversible, incurable, and untreatable condition caused by disease, illness, or injury from which
                i.   there can be no recovery and
       ii.   your death is likely to occur within a relatively short time if life-sustaining treatment is not administered, and your attending physician         additionally determines, to a reasonable degree of medical certainty and in accordance with reasonable medical standards, that there is no reasonable possibility that you will regain the capacity to make informed health care decisions for yourself.
        b.   You are in a state of permanent unconsciousness that is characterized by you being irreversibly unaware of yourself and your environment and by a total loss of cerebral cortical functioning, resulting in you having no capacity to experience pain or suffering, and your attending physician additionally determines, to a reasonable degree of medical certainty and in  accordance with reasonable medical standards, that there is no reasonable possibility that you will regain the capacity to make informed health care decisions for yourself;

2)   Refuse or withdraw informed consent to health care necessary to provide you with comfort care (except that, if the attorney in fact is not prohibited from doing so under (4) below, the attorney in fact is not prohibited from informed consent to the provision of nutrition or hydration to you as described (4) below). (You should understand that comfort care defined in   (state)  to mean  (varies by state, but generally refers to nutrition, fluids or any other medical procedure, treatment, intervention or measure that would be taken to diminish pain or discomfort, but not postpone death.);

3)   Refuse or withdraw informed consent to health care for you if you are pregnant and if the refusal or withdrawal would terminate the pregnancy (unless the pregnancy or health care would pose a substantial risk to your life, or unless your attending physician and at least one other physician who examines you determine, to a reasonable degree of medical certainty and in accordance with reasonable medical standards, that the fetus would not be born alive);

4)   Refuse or withdraw informed consent to the provision of artificially or technologically administered sustenance (nutrition) or fluids (hydration) to you, unless:
      a.   You are in a terminal condition or in a permanently unconscious state.
      b.   Your attending physician and at least one other physician who has examined you determine, to a reasonable degree of medical standards, that nutrition or hydration will not or no longer will serve to provide comfort to you or alleviate your pain.
      c.   If, but only if, you are in a permanently unconscious state, you authorize the attorney in fact to refuse or withdraw informed consent to the provision of nutrition or hydration to you by doing both of the following in this document:
          i.   Including a statement in capital letters or other conspicuous type, including, but not limited to, a different font, bigger type, or boldface type, that the attorney in fact may refuse or withdraw informed consent to the provision of nutrition or hydration will not or no longer will serve to provide comfort to you or alleviate your pain is made, or checking or otherwise marking a box or line (if any) that is adjacent to a similar statement on this document;
         ii.   Placing your initials or signature underneath or adjacent to the statement, check, or other mark previously described.
       d.   Your attending physician determines, in good faith, that you authorized the attorney in fact to refuse or withdraw informed consent to the provision of nutrition or hydration to you if you are in a permanently unconscious state by complying with the requirements of (4)(c)(i) and (ii) above.


5)   Withdraw informed consent to any health care to which you previously consented, unless a change in your physical condition has significantly decreased the benefit of that health care to you, or unless the health care is not, or is no longer, significantly effective in achieving the purposes for which you consented to its use.

Additionally, when exercising authority to make health care decisions for you, the attorney in fact will have to act consistently with your desires or, if your desires are unknown, to act in your best interest. You may express your desires to the attorney in fact by including them in this document or by making them known to the attorney in fact in another manner.

When acting pursuant to this document, the attorney in fact GENERALLY will have the same rights that you have to receive information about proposed health care, to review health care records, and to consent to the disclosure of health care records. You can limit that right in this document if you so choose.

Generally, you may designate any competent adult as the attorney in fact under this document. However, you CANNOT designate your attending physician or the administrator of any nursing home in which you are receiving care as the attorney in fact under this document. Additionally, you CANNOT designate an employee or agent of your attending physician, or an employee or agent of a health care facility at which you are being treated, as the attorney in fact under this document, unless either type of employee or agent is a competent adult and related to you by blood, marriage, or adoption, or unless either type of employee or agent is a competent adult and you and the employee or agent are members of the same religious order.


Ok, that's all I have to say (for now)!
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Rerun
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Going through life tied to a chair!

« Reply #46 on: January 11, 2009, 08:49:46 AM »

I just saw this thread.   :stressed;

I have also stepped in and told a family member "she doesn't have to do this anymore" after seeing this poor woman drug in every other day crying and having another part of her body chopped off each month.  The family is all nice and drags her in and then LEAVES for us to hear her cries and moaning.  After a while of that I too wanted to stop dialysis. 

IMO it is up the the Nephrologist to tell the family "Look, she/he is suffering to the point of no quality of life".  But, then again they are never around either. 

My sister is my POA and she knows that if I'm not aware that I'm on dialysis to pull the plug.  I'll pull it myself if things get worse.

There is a point that an illness is more of a burden on the family than it is worth to being "kept alive". 

It makes me sick to see a person drug into dialysis when they don't even know they are there.  AND they use that lift thing like they are a piece of meat.  Death comes.....dialysis prolongs it.
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thegrammalady
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« Reply #47 on: January 11, 2009, 10:10:29 AM »

thank you padbear, you did the research, i just muddled through.....................i say what she said!!!!!
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s
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
G-Ma
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« Reply #48 on: January 11, 2009, 11:43:52 AM »

Great Paddbear.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Lucinda
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Life is great!

« Reply #49 on: January 12, 2009, 03:07:30 PM »

nursewratchet rocks!  There is absolutely no way I would let my husband dictate whether I lived or died.  When I decide I have had enough, it is enough.  That is rightfully my decision to make, not his or anyone else in the family.  No legs, no sight, feeding tube and living in a nursing home at 59, I would have given up a long time ago.  I don't believe there is a lot of loving going on in that relationship and forcing his wife to endure such a life is not loving, it's abusive.  You did exactly the right thing nursewratchet and there is no way you would get into trouble when you were doing as the PATIENT requested.  Power to you. xx
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