Sunday, April 06, 2008

Stopping Dialysis To Allow A Natural Death

This was the name of one of the articles I read online last night in my quest for information about what my mom will be facing. There was a really good publication from the National Kidney Foundation that did a bunch of Q & A on everything from continued medical care, home health care and hospice options, getting financial affairs in order, to what the person would experience in their final time.

I actually was wrong (I am not a doctor nor do I play one on tv so what do I know), mom wouldn't get sick after stopping dialysis in the sense of anything painful or even vomitting. Both the Kidney Foundation and another publication from a Sacred Heart Hospital said that death from kidney failure is actually painless.

It said...

"This time is usually gentle for the person stopping dialysis. ... As the body's waste products build up there is a natural state of sleepliness and analgesia (pain relief) that leads to a peaceful, painless, and gentle death".

What more could anyone ask for? Certainly not my mother who has been in pain for so long. Certainly not her loved ones who just want her to be at peace.

However, it was this line of the article that stopped our hearts...

"The expected duration of life after dialysis is stopped is one to two weeks".

The National Kidney Foundation publication said anywhere from one day to a few weeks. Either way, this floored us. As strong as are all trying to be, we were thinking one to two months not weeks. This was a real reality check. It's been a hard couple days to have to go through personal papers and starting to think about planning your mother's funeral. I broke down in the shower today because it just hit me like a ton of bricks and started to again when trying to put on some make up. I told myself to "stop it, this is stupid, they'll be plenty of time to cry later".

We just have to keep telling ourselves that this is what she wants.

17 comments:

Christine said...

I don't even know what to say. I know how your mom has struggled the last few years so I'm happy that she may find some peace here in the next few weeks. But I'm so sad to hear that the end may be so soon. Please let me know if you need anything. And keep me posted.

Brittany said...

My grandfather was turned away from dialysis today. He has been struggling with non-hodgkins lymphoma and dialysis for some time. It has gotten really bad and we were dreading the decision. It was a blessing that he was turned away. I found your post and found it comforting. Thank you. My prayers are with you and your family.

Tammy said...

I don't know if you'll ever read this, Lori, but I wanted to let you know I'm thinking of you. I ran across your post while trying to get some information on what happens after dialysis ends. My lifelong friend made the decision to stop dialysis this past Friday. He also has bladder cancer that has metastisized to his bones. He's been at an assisted living facility for three years. His parents are gone and his siblings live far away. My husband and I brought him to our home today. Another close friend came to spend the day. For most of it, he has slept peacefully with a wonderful, relaxed look on his face. He told me he no longer had any worries--that what was left of his life was his own. I'll miss him greatly, but I knoe he's leaving this world with dignity. Thanks for sharing your story. I hope you're doing well...

Tammy said...

I don't know if you'll ever read this, Lori, but I wanted to let you know I'm thinking of you. I ran across your post while trying to get some information on what happens after dialysis ends. My lifelong friend made the decision to stop dialysis this past Friday. He also has bladder cancer that has metastisized to his bones. He's been at an assisted living facility for three years. His parents are gone and his siblings live far away. My husband and I brought him to our home today. Another close friend came to spend the day. For most of it, he has slept peacefully with a wonderful, relaxed look on his face. He told me he no longer had any worries--that what was left of his life was his own. I'll miss him greatly, but I knoe he's leaving this world with dignity. Thanks for sharing your story. I hope you're doing well...

myname said...

My father was a strong man. He was a singer and musician. He was a father of 6 boys and 5 girls. He had such a strong will despite his long battle to fight his diabetes, dyalisis of 6 years (4 hour sessions 3x's a week), amputated leg/fingers and heart attacks + strokes that he suffered. No one can understand a person unless they've actually lived or been in the situation. My father suffered for so many years with his illness and no one knew more than him how much he was suffering. My mother and brother were the only ones apart from him who knew the suffering my father went through, because they took care of him and put up with his frustrating and tiring illness and condition; almost 8 years. God bless them.

He always stated he was going to die and each time he was rushed to the hospital or the ICU, we thought and said amongst ourselves, "This is it. He's going to die this time." And to our surprise, my father would fight through it. It became a habit to some extent. Thinking that my father was going to die and wouldn't. To me it was conforting to think and then feel the relief knowing I was wrong.

He became very depressed and agitated as years progressed and would show it with rude behavior. His character wasn't too different prior to his illness, so as I write this, I realize my father handled his illness very well despite his condition.

So, my father's final days. It was October 2008. He suffered his final stroke and was put under heavy medication that supressed his coherence. He was not talking, could not hold his head up, and was extremely sad to look at because he looked like someone else; not at all like our father. I was lucky not see him this way because I live in a different state. I flew to see my father because that was the last time that everyone in my family said that it was going to be the last time to see my father "alive". When I got to the hospital, my father was having symptoms of hallucination. He was talking to people he knew from the past; no one was there but he was seeing them. He was talking and calling out to people who were no longer alive and suddenly go back to sleep. He was like that for a few days until the medication he was on was filtered out through the dialysis.
He had been throwing up many times through out the day for almost 2 weeks. He couldn't keep anything up. The doctors said they could no longer keep him in the hospital. They said he had to be watched by family 24 hrs to make sure someone could raise him to allow him to vomit the liquid. My father was unable to raise himself because he had no strength to do so. He was released and a few days later and then admitted to another hospital.

The doctor said ammonia was building up and toxins were building up and might lead him to go in a state of comma. At this point he was still doing dialysis but was not alert. He had an oxygen mask and the doctor also stated the oxygen and the dialysis is what's keeping him alive. They stated that they would do an incision to flush out some of the toxins. My father had not eaten any food for almost 2 weeks. They later put an IV and even stated that we should make a decision to perhaps stop the dialyis or take the oxyen off because there was no way to appreciate the quality in life he was in. It was true that our father was not in a state to appreciate the condition of health or state of mind. But no one dared to make the decision to stop dialysis or to take the oxygen mask off. At the end of his hospital stay, I stayed the last night with him and the next morning, they gradually reduced the oxygen until they made sure he could breath on his own. He was a bit alert. We were happy for the moment. I flew back to my home.

He was alert and aware of what he was saying and made the decision to stop dialysis. He said he was frustrated living the way he was, tired and just wanted to die. He made it easy on my mother and us to make the decision on his own, to stop dialysis. My family convinced him to go back to dialysis, then on his next session didn't go and then went back the next session. He was like that for a week. Everyone wanted him alive of course. But I told my sister we needed to respect his decision because he is the one that is living in the condition he is in, ever single day and night for teh past 7 years. He went one day, skipped the next session, then went back then decided to fully stop.

November 11, 2008 I flew to see him and on the 14th of November he completely stopped the dialysis. The count down began and we thought we were prepared mentally. We were not. His toxins began building up gradually and he could feel it in his back (lungs) and chest (airways), we didn't know how he felt. He was extremely restless and always complaining about his back, he wanted to eat but could not hold up nothing. You need to realize that when a person goes off dialysis, there is NO FILTRATION. My father had not urinated in almost 2 months and all of those toxins began buliding up inside the lungs, stomach and anywhere the toxins can go. He began throwing up again. On the 22nd, Saturday my father told my sister and I that in 5 days he would die. But it didn't seem like it would happen. Those last 5 days before his death, he was a bit better as the days counted down. He was talking more and recognized everyone that asked him "Do you know who I am?" He would answer yes. The night before his death, I honestly thought he needed to be put back on dialysis because it seemed like nothing was wrong with him. I suppose I felt like that because a person that comes off dialysis they die within the week and live no more than 2 weeks. Also, I thought that we would see physical condition that would show that he is dying. I really didn't know what to expect but I just felt as though it wasn't going to happen because I didn't want him to die. On Wedneday, he wanted to get off the hospital bed we had for him in the house and he wanted eat. I hugged my father and helped him as much as I could because he was still throwing up. He felt so cold because his circulation was not strong. He wanted to eat so we gave him a bit. We were in a way fooling ourselves thinking nothing was going to happen because it had been exactly 2 weeks since being off dialysis. He was so tired, and so restless. He wasn't comfortable in any position because of the toxins not allowing him to be comfortable.

On November 27, 2008 at about 5:45 A.M. the demise of my father came. He died because 2 weeks and 1 day after being completely off dialysis; the toxins had literally reached to the point that he could no longer breath and his circulation had stopped. The oxygen stopped, everything stopped. I still don't accept his death. I still don't believe it happened. As many times that I had to fly to see him in 5 years of flying back and forth, going to the hospital; I thought I was mentally prepared. We always said "He's going to die, this is it." We'd been saying this since 2001. We were not prepared for this as many times as we thought and said it we were, WE WERE NOT PREPARED.


Love the ones that are close to you. Let go of everything. Don't hold on to nothing that keeps you from being close to the ones that matter. You only live once and you only have one father and one mother. Love your siblings and don't hold grudges. Once they are gone, the worse way to live is to live with regrets.

Anonymous said...

I am going thru a similar situation with my mother, Becky. She has kidney disease and has been on dialysis for the past 3 yrs. She has lost circulation in her legs now and is under enormous pain. She will be deciding tomorrow if she is to go off dialysis. Thank you for your posts as it gives me comfort to know she will no longer suffer.

Anonymous said...

My mother is on dialysis and has b een for 3 years, Her doctors want to stop it but she said not yet. I don't want her to stop it because I know what will be next and I'm not ready for her to go. If she stop it soon I'll have to pray hard for for God to strengthen me.

Anonymous said...

my name is stacy, i am 40 yrs old and i have been on dialysis for 3 yrs.....i am also hiv+, have had a stroke and recently started having seizures.....i recently lost my partner of 12 years and i have decided to stop treatment.....just make sure you get hospice in before you stop!...they make things so comfortable for the patient....

Anonymous said...

I'm a 36 year old male with kidney failure. I also have Diabetes with a lot of complications, Neuropathy in my legs, Very painful. My stomach has stopped working, I get fed through a tube in my stomach, When i do try to eat i start throwing up and it lasts for days till i just end up throwing blood and not even being able to keep fluid in. My bladder has stopped working. I have no sensation of touch in my legs, hands stomach and my eye sight is failing.
I have no people i can call friends to help me discuss my situation. They seemed to disappear one b y one when my illness got worse.
I want to stop Dialysis and let nature take its course. I don't see any future for myself. Now I've been told i need to see a psychiatrist to see if I'm of sound mind. Am i taking the cowards way out or should i battle on. Me. I don't know.
Mark

Anonymous said...

My father is 81 years old, on dialysis for 1 1/2 years now. He has diabetes, a pacemaker, recently fell and broke his arm and now has taken another fall and broken a vertebrae in his back. He cannot handle narcotic pain medication as it causes him to hallucinate and/or major confusion. He also was found to have skin cancer which will require more surgery and the arm that holds his "ports" has blown up and is seeping fluids. He swears he'll never go back to a nursing facility again. When he is lucid he is adamant about never going, "back there". His companion is 11 years older than him and has severe hip arthritis which no longer will allow her to assist in his care. I feel that this is an irreverisble situation for him. When he is in bed he is comfortable, if we try to even move him in bed he is in extreme pain. How is he even going to be transportable from a nursing home facility to a dialysis center 3 days/week without being in severe pain. I am feeling so terrible here because I want this to be over for him. I don't even know how to approach him with the question of discontinuing his dialysis. I know that if the decision becomes mine, I can let him go. I did it before with my mother who died of a cerebral hemmorrage and had to be removed from live support. Her death was peaceful and I've never regretted being with her and holding her when she took her last breath. God grant me the strength to get through this. Am I a cold hearted person? I hope not.

Anonymous said...

Our countdown timer has begun. My Dad has been on dialysis for 10+ years 3 time 4 hous a day. Wednesday was his last treatment, the doctor and nurses all agree that he is in to much pain. His morphine has been increased, and a new pain med begins, hospice has been called. He has gangreen in in foot and loss of circulation in both legs. He hasn't eatten solid foods in forever now, and my mom said he is beginning to have problems swallowing food/pills. He has been totally bed ridden for years now. The DNR has been filled out, we all know it is best for him as my mom has been his only care giver for these 10 years, he won't let anybody touch or help him it has to be my mom. He is just a shell of the dad I remember years ago, we all love him but the suffering needs to end, not just for him but also for my mom. She hasn't left the house or his side in a decade, sleep is a minimum as pain meds are given every 3 hours. He talks in his sleep about stuff taking place 10-20 years ago. Thank god that all his financial paperwork was taken care of years ago.

Lori said...

It always amazes me when I still comments on this post well over a year later. I do like to hear from those going through what our family did and if what I've written helps anyone then I am happy. My mom held on from the time I wrote this (April '08) and decided to give dialysis another shot but it only last a few months. In August, after also being diagnosed with COPD and struggling to breathe so much of the time, she finally made the decision to stop...in fact, her health detoriated so much that there really was no other choice. She knew it, we knew it, and her doctors knew it. She lived 5 days off dialysis but much of it was in a coma...gone to us almost immediately. If you like to read of how the end was in our case, I wrote about it in August 08.

http://lorifamily.blogspot.com/2008/08/in-loving-memory.html

Thanks again for your continued viewing of my blog. It hasn't been much since my mother passed. I just don't have it in me anymore. But thank you and bless all of you on your journeys.

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Harold said...

i am going through this right now. my dad is on day number 9 today. 2 days ago he was sitting in his easy chair talking and laughing. the next morning we could not get him to wake up, and hasn't really woke sense. it's very sad and very very hard to watch. i'm sick and wish it were me. dont know how i can get through this. but thank you for sharing your story, i know how u feel and what u're going through. may your mother and u and all your family have peace. and may she be with THE MOST HIGH forever.

Anonymous said...

My Father Kurt decided to stop dialysis after a year. After a heart transplant 15 years ago the immunosuppressive drugs killed his kindeys. He hated dialysis with a vengeance, ad after a blood clot, 2 bypass surgeries and a leg amputation decided to stop dialysis. Since he made the decisionn his demeanor changed...he found peace and even began to smile again. He is in the final stages and will die at any moment. His decision is so hard for us, his family, because we will miss him terribly. But we know it was for the best. He is not talking anymore, only sleeping but not in pain.He says he was sick for half his life, but didnt feel sick until dialysis. He was truly a great man.

Garrett said...

I am 30 years old and have been on dialysis for the most part of 10 years. I have had three failed transplants and feel that there will never be another chance for me get another one. But my life is good. i have a wonderful wife and look forward to starting a family one day. I hope that one day when it is my time my family allow me togo with my dignity and not go while attached to that machine.

Shelia said...

My Aunt stopped her dialysis and passed away within a week and half. We just lost her on the 8th. She had been doing dialysis's for 7 years. She is a diabetic, death-mute and was going bling. Ther was nothing left for her. Without her vision [which is the only way of her being able to see to commuicate with the world] she would of been left in a world of silence, darkness, pain and fear. My aunt's decision was not easy and by no means easy for the family to except. However, understanding what she was going through and feeling, it was the only ethical and moral thing for her to do and for the family to support her.
I know she is in a place now free of pain, fear and now being able to talk and hear.
I wish you all the luck in understanding your loved one's decision. Trust me you might not agree with it now, but you will.
Good luck and may God be with you and your family.