Hi Folks
Has anyone ever gone without dialysis and how long and how did you feel?
bobeleanor :?:
How many treatments a week are you used to doing? What is your Kt/V or URR? How long were you thinking about going between treatments?
When people go without dialysis they start to have the symptoms of uremia because the wastes are building up in their body instead of being removed by dialysis. They feel tired, have memory problems, sleep more, start itching or itching worse, food and especially meat would taste funny, lose their appetite, feel nauseated or even vomit. They get short of breath and have to sleep on more pillows. They can have muscle twitches, muscle weakness, and an irregular heart rate, Miss enough days of dialysis and you would lapse into a coma and your heart would stop beating.
In conventional (3 times a week) hemodialysis patients, research has shown that skipping 1 or more dialysis treatments a month increases your risks of death 25% and the death risk is 20% higher if patients shorten 3 or more dialysis treatments in a month. Patients who choose to stop dialysis die in 1-2 weeks…the average is about 8 days. Some people live longer if they have more natural kidney function and if they limit high potassium foods in their diet and their fluids. Others people choose to eat what they want and enjoy the brief time they have left.
I hope you’re not so depressed about your wife’s health and your situation that your considering stopping dialysis. If so, please promise me that you’ll talk with your social worker or another counselor.
WARNING: If you want to find a clinic that will sponsor your home dialysis, skipping or shortening treatments is not the way to prove to a new clinic that it can trust you to do your home treatments.
Beth wrote:
Miss enough days of dialysis and you would lapse into a coma and your heart would stop beating.
When one decides to let go is it a painful death?
I have gone through the thought process on this subject a few times. I am pretty sure to just let yourself die without dialysis would be extremely painfull. That is why you want to sign the refusal of care paper work in all the counties near you. That way no well intending relative can have you driven to another ER and kept alive on a machine. Then it would be time to eat what ever foods you haven’t been able to. All high potassium foods and you could even add powdered potassium to the foods to make sure that if you throw up you will still die. Then go somewhere where no one will find you for a couple of days. Rent a cabin in the mountains for a week. Go there and do the deed. One of the real problems with decidein to stop dialysis is at that point you have crossed the suicide rope. From that point on you are commiting suicide. So if you have any religous reservations, you might want to rethink something. I have heard of people going two week without dialysis, before a friend found them and took them in for treatment. I have only once heard of someone that stopped treatment and died. That person’s choice to die was supported by their family and their death was assisted. I have thought this out very well for myself. I like to know what the options are and what might happen if I made a choice. I do know that everytime things are at there worst, they can only better. So that something even worse can come hurdling head long at me. In a lot of ways it feels futile. Yet, for some reason I keep hooking myself up to this dreaded machine, just so I can plug through another day of failure and pain. :twisted: So that I may smile at being able to write things like that :twisted:
So I would say you would have about two weeks and I wouldn’t just let it happen. iI would be proactive about it. Forget about the suicide issue, cause once you have stopped treatment you have all ready commited that sin and honestly if there is a god, I seriously doubt he/she uses the guidelines of mans thinking when it comes to his/her rules.
LSB
It is very fortunate for me that dad is with a center that allows us to do alot of the tasks at home. He has informed us all if he has to spend his life running to Drs. and Centers then he is going to quit because to him that is no life, no freedom. Especially since were in a rural area and those trips cost at least 1/2 day.
I don’t think the question is rather bobeleanor can be trusted to do home treatments. I think the question is just how much can you demand of a patient for compliance before you hit the straw that breaks the camels back. I’m sure every patient has different circumstances in their life and every line would be drawn at a different place.
From what I’ve heard from doctors and family members of patients who chose to stop dialysis and died, dying of kidney failure is not painful, especially if the patient continues to limit his/her fluids. Leafsunbear is correct that once you choose not to do dialysis, there is no renal diet to follow and I’ve heard of patients who chose to stop and ate all their favorite forbidden foods.
I’ve worked with a number of patients over years who decided to stop dialysis. Usually this happened when their health had failed and they were very limited in their ability to enjoy life or when they developed a new terminal diagnosis. I have to say that I can’t remember a single home dialysis patient who made this choice whereas I knew several in-center dialysis patients who did. I do not remember anyone who made this decision lightly. I always got the feeling that they had thought about it for a long time. We always offered a referral to hospice. The hospice nurses kept the nephrologist informed of how the patient was doing and the nephrologist could make sure that the patient had any medications for pain or anxiety that they needed when they needed them. The families really seemed to appreciate the medical and emotional support they received from the hospice team.
In my opinion and the opinion of most of the organized religions, it is not a sin to stop dialysis. The issue of whether stopping dialysis is suicide has been discussed in great detail. The consensus of major organized religions is that stopping dialysis or choosing not to start dialysis is NOT suicide. It is allowing natural death to occur by not choosing to start or choosing not to continue mechanical support.
The National Kidney Foundation has two brochures on this topic and the issue of suicide is addressed:
– Dialysis: Choosing to Stop
http://www.kidney.org/atoz/atozItem.cfm?id=40
– Dialysis: Choosing Not to Start
http://www.kidney.org/atoz/atozItem.cfm?id=28
When I talked with people considering this option, I wanted to be sure that we had done all we could to give them hope and meaning. I didn’t want someone to make this final of a decision if they had treatable depression. I also wanted to be sure we had done all that we could to make dialysis fit best with their lifestyle and be sure we had addressed any issues related to symptoms and dialysis comfort. I wanted to hear that they had discussed their decision wiith their doctor and with their loved ones and that all accepted their decision. Some family members talked with me before or after the patient’s death telling me about how they had come to accept loved one’s decision and how their loved one died peacefully. Finally, I wanted to be sure that their spiritual needs were met and that they had either talked with their minister or other spiritual advisor or felt no need to do so. I often think of the patients with whom I had these discussions and what I learned from them about living and dying with dignity.
I agree that as bobeleanor describes the situation, the demand for compliance may have been unreasonable given his wife’s needs. It seems to me that there would have been many alternatives–alternatives that his home clinic could have offered and perhaps alternatives that bobeleanor could have chosen–that may have prevented the situation from escalating into what became an outright “conflict.” I hope bobeleanor can find a clinic that allows him to do his dialysis at home while still helping to provide the care his wife needs now as she’s recuperating.
If home dialysis is not possible, perhaps bobeleanor would do better on nocturnal in-center dialysis 3 nights a week. Fresenius is doing this at several of its clinics across the country. Doing nocturnal in-center dialysis would give him better dialysis than conventional dialysis and it would leave his days free for doctors’ appointments and other activities that most people do during the day. I suspect there would be someone (family member, friend, neighbor) who his wife could call if she needed help on any of the nights he would be gone.
Hi Folks
Thanks to All
Rest asure thank to the wonderful of HDC I have not nor will I end it just like that. I have an Advanced Directive that that says in no way shape or form will I ever go back to a center.
My doctor who seens to want to work with me and I will see how far he is willing to go. But I believe that I have good renal function left . I still have a cath and it clotted so Davita in phila will not under any reason let me good to a center a Davita center near to have the anti cloting agent put in. I finnally have manger to get a day when I can get to phila. I will go next week to get fistula started. Once started I want to see if doctor will try to cut back if not l;et me try to go with dialysis but stay on the dialysis diet . and get monthly check up at near by lab. for blood work, plus use my own common sense to get a hold of him and let him what is going on. I’ve read some papers that say some people who have some renal function left and if they stick to a renal deit ,taking phoslo renal cap etc live very good lives. I also understand that if I should want to stop and let things happen that death is not painful. But and let repeat that but I will not do this unless my wife and have talked and talked and talked some more. I just sick of davita
bobeleanor 
sorry for any mis spelled words I"m off to get shopping done and take my mother to doctors.
What is your GFR?
I hope you reconsider your decision to not to ever do incenter dialysis. Just because you had a bad experience with one DaVita center or a group of DaVita centers managed by one person, it doesn’t mean that you’d have a bad experience at another clinic, even a DaVita one.
Beth wrote:
When people go without dialysis they start to have the symptoms of uremia because the wastes are building up in their body instead of being removed by dialysis. They feel tired, have memory problems, sleep more, start itching or itching worse, food and especially meat would taste funny, lose their appetite, feel nauseated or even vomit. They get short of breath and have to sleep on more pillows. They can have muscle twitches, muscle weakness, and an irregular heart rate, Miss enough days of dialysis and you would lapse into a coma and your heart would stop beating.
Beth wrote:
From what I’ve heard from doctors and family members of patients who chose to stop dialysis and died, dying of kidney failure is not painful, especially if the patient continues to limit his/her fluids. Leafsunbear is correct that once you choose not to do dialysis, there is no renal diet to follow and I’ve heard of patients who chose to stop and ate all their favorite forbidden foods.
Reading this description, I am wondering what is painless about it…it doesn’t sound very painless?? If one limited his fluid he would be miserable. Likewise, if he went for the potassium eating all the forbidden foods he enjoys he would be too sick to enjoy it. It seems like it would be beyond scary knowing that the food one put into his mouth was about to kill him by causing him to lapse into a coma. But you seem to be saying that the process proceeds pretty quickly and before one know it it’s over. I am seriously trying to picture this, because it would seem that even after just one day of cutting way back on fluid and eating the wrong things, one would already begin to feel so bad it would be unbearable. Around at what point in the 1-2 week process does Hospice come in and start with the medications? Is the person essentially out of it most of the time, because this does not sound painless or peaceful, but maybe there is a dynamic that occurs here that I have no knowledge of and can’t picture.
Beth wrote:
We always offered a referral to hospice. The hospice nurses kept the nephrologist informed of how the patient was doing and the nephrologist could make sure that the patient had any medications for pain or anxiety that they needed when they needed them. The families really seemed to appreciate the medical and emotional support they received from the hospice team.
Once Hospice takes over, does the patient have any further contact with his nephrologist other than meds prescribed or is that where the relationship ends? Does the patient using Hospice services usually die at home surrounded by family members or is the nephrologist or hospice nurse present in his dying moments? How soon is the body taken out and who transports the body?
Beth wrote:
Some family members talked with me before or after the patient’s death telling me about how they had come to accept loved one’s decision and how their loved one died peacefully. Finally, I wanted to be sure that their spiritual needs were met and that they had either talked with their minister or other spiritual advisor or felt no need to do so. I often think of the patients with whom I had these discussions and what I learned from them about living and dying with dignity
Can you share some of what you learned from these patients about living and dying with dignity?
Bobeleanor boy they sure are giving you a hard time. When dad’s catheter clots a clinic next to our home used to take us in and put in the
Activase. Now our nephrologist writes a script and I do it at home. I not only do dad’s dialysis I help care for my mother also. I couldn’t possibly keep them both going as good as they are without the corporation of our nephrologist. I really feel for you.
Sorry meant to say co-operation not corporation.
Keep in mind that you’re looking at this decision from the perspective of someone who has presumably a good quality of life. If someone has chosen to stop dialysis and die and accepts death as better than the current situation, he/she probably wouldn’t worry about whether one bite of a formerly forbidden food would cause death. From what I’ve learned from patients, they look on having previously forbidden foods as a treat. When people are eating the foods that they like, they’re not generally feeling sick. High potassium foods don’t upset the stomach. They affect the muscles and can cause the heart to beat irregularly and eventually stop. So far as fluids are concerned, the only patients I knew who terminated dialysis were on conventional dialysis and limited to 4 cups of fluid daily. Suggesting they stick to that limit instead of drinking all they wanted was intended to keep them from getting fluid overloaded and short of breath. Getting short of breath can cause someone to feel anxious. Hospice can start as soon as they get the referral and can get to the home. Based on the nurse (or family’s) report, the nephrologist can order anti-anxiety medications to reduce anxiety. The nephrologist can order pain medications, including morphine, so if the patient complains of pain, it’s available right away. What I’ve heard from family members is who were with their loved one when death occurred is that their loved one slept more and more until they were sleeping all the time. When people are sleeping (or in a coma), they don’t eat or drink and I believe their loved ones allowed them to sleep without forcing them to eat or drink.
In my experience, with my patients who chose to stop dialysis, the nephrologist remained the patient’s doctor when the patient was followed by hospice. The hospice agency kept the nephrologist informed about the patient’s status and the nephrologist gave orders to for whatever the patient needed to be comfortable. Hospice nurses are terrific and monitoring patient comfort. So far as how death occurs, the hospice nurse will talk with the patient and family to see what their wishes are about who the patient wants with him/her at death and lets the family know what the signs are that death is near. I know of some patients whose loved ones stayed with them in the room once those signs were recognized. I’m not sure if the hospice nurse was always there when death occurred, but suspect it’s rare that the nephrologist would be there. The hospice agency helps the patient and family know who to call when death occurs based on what the laws are in that area. I believe funeral homes are set up to transport a body any time day or night.
I could probably go on for hours about what I learned from my patients and their families. Here are a few things they taught me. Some may find these cliche or trite, but these are things they said:
– Live for today.
– Keep a positive attitude.
– I dialyze to live, not live to dialyze.
– Dialysis helped me learn to take the time to smell the roses.
– Tell the people you love that you love them
– Don’t go to bed mad.
– Faith eases suffering.
– There are many worse things than death.
I have a friend who is also a social worker. One of her patients made a cassette tape (remember those) to give to the caregivers at his clinic telling them how much he appreciated all they had done for him. I didn’t work at that clinic, but I bet there wasn’t a dry eye in the house when they heard that tape. And yes, there are clinics that are that good.
to Heather
death is what happens. sometimes it can be painful. but define painful.
physical pain or mentally painfull. In my life I have watched my Father slowly die over a time frame and he never once talked of pain. He had faith ( that is on each person) He just wanted to hear that his wife my Mother would be taken care of which the Family said would happen. It was very painful for the family to stand by and not be able to do anything, nothing could be done his time had come, We would wake up asking God to take him both for his sake and more for ours. The pain for us was in our hearts and minds. I also saw my older sister die from cancer. One day she was a healthy beautiful women full of life, after going though cancer operations and treatments that seem to go on forever she and her husband said no more. By this time the pain was very hard on her physically but she was made comfortable with pain meds. For the family we did not want her to die but the that women we knew had turned into death camp picture one sees from WW2
In my life I have had very hard physical pain but pain meds are a wonder. I forget the phyical pain it fades It is the mental pain that stays and hurts the most. That is why confinement just hospital stays are painfull.not in the physical sense but in my mind. They bring back all the trips that seam to never end, doctors pokeing you, nurse waking you at all times of the day or night and not being in control, no freedom. Only one doctor ever came to see the effects of long term hospital stays and chronic illness can have a person. I have no fear of death , I want to live a rich full life, but one must draw a line . I hope my new doctor will have the vision to see me for who I am . I just want my doctor and me to make the call. It has worked very well all these years I see no reason to stop. It may take time but am a hard head.
I hope this helps Heather
bobeleanor
ok, I can see how religions could consider stopping dialysis not to be suicide. But that to me falls into the hypocracy of religion to me. That is another topic entirely though.
I would assume that death from going toxic from not having dialysis would be very painfull. I would not know though I have not ever experienced that.
I could write more on this topic, but I just ate and I am not feeling to good.
LSB
Anyone with questions about what happens if someone stops dialysis, ask your nephrologist. I suspect they’ve seen patients who have choosen this option, have taken care of them during the dying process, and can share what doctors do to help them die without suffering.
Thanks for the input and thoughts shared on this subject. Can anyone recommend a book on end of life issues? I know yrs ago there was a book entitled “Death and Dying”. As life goes on, we feel the need of a very precise plan for how to handle the final moments of life for our loved one. Hospice sounds like a very good agency from everything we’ve heard about it, nevertheless death is such a personal thing and I don’t know how others feel, but can’t imagine calling hospice back and forth when our loved one is at the end and would want privacy in our loved one’s final moments. It seems like counseling with hospice, a sw or counselor well in advance of the end would be wise to be prepared for that time as to how we will handle everything so all goes peacefully.