Ask either the nephrologist or PCP for a Hospice referral. I was a dialysis nurse for many years and have some experience with this. Once dialysis is withheld and hospice is on board in my experience, one passed away in 1-2 weeks, but of course could be longer if the person can still urinate thus excrete toxins and fluid that collects during the dialysis treatments. The longest time I have seen is a month, but this is an exception. From what my patients families have told me, their loved ones passed quietly and were pain free with hospice as support. Please, please realize the need for hospice to provide all of you and especially the person end of life care. It’s often more difficult for the family once the patient comes to the point that they are tired of the dialysis process, which can be and often is an arduous procedure three times a week. I am sorry you and your loved one are at this juncture. But I know the decision to stop dialysis is never made lightly by the patient as they are unfortunately tired of being ill all the time.
I know this is hard. My grandmother was 92 years old when she had a heart attack. She was also advised she needed dialysis. This happened towards the end of August by the middle of October she had passed away.
My aunts and uncles thought it would be too much for my grandmother. Also she didn't want any treatment. It is really hard. Hopefully a social worker or family therapist can help ensure this is what the patient truly wants.
I would second the information that Shane has written. two weeks from stopping dialysis is a good estimate for the length of life expected. Many patients become so weak and tired that they just can't go on for weeks on end and just decide to do no more. i would never argue with a loved one who made this decision.
Contact Hospice. They will help your Father, you and the rest of the family through this process. They will make sure he is comfortable and you all understand what will happen.
My father past from kidney failure August 6, 2017. He never wanted dialysis, he went into hospice when his kidney function went below 20%. If he didn’t have gout his last days would have been easier. He stayed for a month or two once in hospice it went fast for me still trying to get my head around how quickly and peaceful he left. Hope this helps you on your journey.
My father 92 past from kidney failure August 6, 2017. He never wanted dialysis, he went into hospice when his kidney function went below 20%. If he didn’t have gout his last days would have been easier. He stayed for a month or two once in hospice it went fast for me still trying to get my head around how quickly and peaceful he left. Hope this helps you on your journey.
I’m so glad you asked this very important and difficult question. I will add another voice to the suggestion to involve hospice care prior to discontinuing dialysis. Adequate medication to avoid discomfort is essential. Unfortunately I have some experience with this. My grandfather passed away from liver failure after the family was advised that dialysis would be troublesome, painful and difficult for him to withstand at his age, and due to the fact that his liver was already in a state of extreme dysfunction. (He probably should have already been on dialysis years before it got to that point, but he had been very fit mentally, and thus he had been making his own medical decisions. I’m sure he thought dialysis would be too annoying to have to deal with, and didn’t want to bother people to drive him to a dialysis center three times a week. But I doubt he had ever discussed it with anyone other than his doctor.) He was moved to hospice a couple of days later, but the interval was very painful and confusing for him, even with the hospital staff doing their best. Once he was at hospice, they made him comfortable immediately, and he passed on in peace two or three weeks after the move. The physical surroundings at the hospice were home-like and calming, he had around-the-clock company, and he was at peace, in no pain, with loving family by his side. I just wish the hospital doctor had been more open with us about the need for hospice care for adequate pain relief in the absence of dialysis. Maybe doctors are better about this nowadays with hospice care being discussed more openly. I hope so.
YES! I researched this before my father went onto dialysis.
What happens is the person basically drowns in his/her own fluids. No, it is not painful. They go into a deep sleep and never wake up. That said, I also stopped all Pop's medicines other than pain and memory and it allowed him to pass in 5 days. The usual time frame is about 2 weeks. In 48 hours, Pop remained in his bed and refused foods. He passed very peacefully - I was with him in his final moments.
My dear aunt, 94, fell one morning on her way to dialysis. She was hospitalized with several broken bones. A decision was made that she was not a candidate for surgery. She was placed in a rehab and was sent by a medivan for her usual dialysis. She was in so much pain. She would tell the staff to stop the dialysis. No one told her son until several episodes of missed or partial treatments. When my mom got word that her sister had been placed on hospice I traveled to see her. We had several days of long visits. She talked and talked and then would sleep. Finally she reached a stage where she was in obvious pain and hospice increased her medication. She would only rally for a few moments at a time after that. I estimate it was about two weeks that she was partially and then completely off dialysis. In one of our talks my aunt said “I guess I shouldn’t have told them to stop. “ She was a tough lady but dialysis on top of broken bones was just too much. I agree about not going it without assistance. She was in significant pain before her meds were increased towards the end. She would beg me for help. Once the meds were adjusted she just slept.
I think people with end-stage renal disease are lucky, if they have lived a good and productive life. They can decide to go at a time of their choice--after Christmas or a special birthday. My mother went into renal failure as a consequence of metastatic liver disease and passed away peacefully at age 80 after ten days. I am now the same age and hope I can be as fortunate.
If BUN blood urea nitrogen is high, it can have an effect. Not sure about hallucinations, but it can cause confabulation where the person tells stories about things that are not true. It is not intentional deceiving, it is something they really believe
I’ve not seen any hallucinations with withdrawing dialysis although I have heard that before dying, many folks have hallucinations. As a norm, not really. But everyone is different!
My dad didn't have any hallucinations. He was actually thankful to be allowed the dignity of being able to choose when to stop the dialysis. He was on Hospice for 5 days and they gave him all the painkiller he needed for his shoulder pain. He said it was the first time he could remember having no pain.
As I said, I was with him in his final hour and he was overjoyed to see my mother come for him. And then he passed over.
Reno55, thank you, maybe that's what was going on; does it not happen with everybody then? not sure if hallucinations is actually the right word, but didn't know what else to call it, but not just confabulations, not talking about talking, in that sense, she was having sensation of something eating, biting, crawling? on her skin causing her to just claw and scratch it I think to the point of tearing it causing it to bleed; horrible
My dad passed away in hospice very peacefully 7 days after stopping dialysis. The first couple of days after stopping he was still talking but as the days passed he became weaker and eventually fell into a deep sleep-like state. On what turned out to be his last day alive the wonderful hospice nurse encouraged me to talk to him as he could hear me and she said he was on his journey. He passed 3 hours later.
I will say I was freaked out by the drowning in their own fluids as someone stated earlier - which is true, but it’s nothing like I expected it to be. As they said in hospice, he’ll just sort of fade away peacefully, and that’s exactly what happened. Good luck to you.
I think uremia caused by elevated BUN can be seen in kidney failure and can contribute to itchiness. It can sometimes be seen on the skin like a coating or frost
Reno55, thank you; that's the word, I knew - but had forgotten till I saw your post - I'd heard of it - so do you think, is it possible that not everybody's BUN level elevates?
I honestly wish everyone could pass as peacefully as a person with kidney failure who refuses dialysis, as my mother and aunt did. Hospice is critically important, as they have been there and no exactly what to do.
My Aunt Edna was on dialysis for three years in her early 80s. When her dog died, she said he was the only reason she was staying alive and she wanted to go join him. She had no children, and her much older husband had passed years ago. We had a small good-bye party for her, and then nature took its course. She simply drifted into a coma and died after about a week. It was all very peaceful and I only hope my death can be as peaceful as that.
Yes. My father decided to stop it 7 years ago. Before he went onto dialysis, I looked up what to expect when he quit. Basically, they fall asleep and drown in their own fluids but as bad as that sounds, it is painless.
I stopped my father's medicines when he decided to quit. So instead of it taking 2+ weeks, he passed peacefully 5 days later.
It's a difficult decision for the family to accept but I promised my dad that the day he'd had enough, I would stand up for his right to quit. I invited the family in to say their farewells and he was gone within days. To me this was much better than a wake - he was able to visit with anyone who wished to stop by.
Honestly, it really is painless for the person. You can look that up.
I was a dialysis nurse for many years and have some experience with this. Once dialysis is withheld and hospice is on board in my experience, one passed away in 1-2 weeks, but of course could be longer if the person can still urinate thus excrete toxins and fluid that collects during the dialysis treatments. The longest time I have seen is a month, but this is an exception.
From what my patients families have told me, their loved ones passed quietly and were pain free with hospice as support. Please, please realize the need for hospice to provide all of you and especially the person end of life care.
It’s often more difficult for the family once the patient comes to the point that they are tired of the dialysis process, which can be and often is an arduous procedure three times a week.
I am sorry you and your loved one are at this juncture. But I know the decision to stop dialysis is never made lightly by the patient as they are unfortunately tired of being ill all the time.
I know this is hard. My grandmother was 92 years old when she had a heart attack. She was also advised she needed dialysis. This happened towards the end of August by the middle of October she had passed away.
My aunts and uncles thought it would be too much for my grandmother. Also she didn't want any treatment. It is really hard. Hopefully a social worker or family therapist can help ensure this is what the patient truly wants.
From their home page, go to the Patients tab, then choose A to Z Health Guide from the drop down menu, and you'll see a range of Dialysis topics.
Many patients become so weak and tired that they just can't go on for weeks on end and just decide to do no more. i would never argue with a loved one who made this decision.
They will help your Father, you and the rest of the family through this process. They will make sure he is comfortable and you all understand what will happen.
What happens is the person basically drowns in his/her own fluids. No, it is not painful. They go into a deep sleep and never wake up. That said, I also stopped all Pop's medicines other than pain and memory and it allowed him to pass in 5 days. The usual time frame is about 2 weeks. In 48 hours, Pop remained in his bed and refused foods. He passed very peacefully - I was with him in his final moments.
When my mom got word that her sister had been placed on hospice I traveled to see her. We had several days of long visits. She talked and talked and then would sleep. Finally she reached a stage where she was in obvious pain and hospice increased her medication. She would only rally for a few moments at a time after that.
I estimate it was about two weeks that she was partially and then completely off dialysis.
In one of our talks my aunt said “I guess I shouldn’t have told them to stop. “
She was a tough lady but dialysis on top of broken bones was just too much.
I agree about not going it without assistance. She was in significant pain before her meds were increased towards the end. She would beg me for help. Once the meds were adjusted she just slept.
As I said, I was with him in his final hour and he was overjoyed to see my mother come for him. And then he passed over.
I will say I was freaked out by the drowning in their own fluids as someone stated earlier - which is true, but it’s nothing like I expected it to be. As they said in hospice, he’ll just sort of fade away peacefully, and that’s exactly what happened. Good luck to you.
I stopped my father's medicines when he decided to quit. So instead of it taking 2+ weeks, he passed peacefully 5 days later.
It's a difficult decision for the family to accept but I promised my dad that the day he'd had enough, I would stand up for his right to quit. I invited the family in to say their farewells and he was gone within days. To me this was much better than a wake - he was able to visit with anyone who wished to stop by.
Honestly, it really is painless for the person. You can look that up.