Declining Dialysis

[Athena]

Does anyone know what happens from a legal and medical point of view if a patient states clearly in writing to a nephrologist that they don't want end-stage kidney treatment? What happens after that?

[Charlie B53]

Merely my opinion,

The Dr would be limited to only prescribing those measures and medications to assist in preserving remaining kidney function for as long as possible.

This could be viewed somewhat similar to a written 'Do Not Resuscitate' decision, where the Dr's are limited only in minimizing discomfort during the failure of the body systems and organs, leading to eventual death. Perhaps far sooner than with available treatment methods that may be more 'invasive' such as injections, surgery to put in a catheter, or a dialysis access.

It can be a very tough decision to make whether to go with life extending treatment or to give up and let nature continue to degrade the organism until death.

The difference in time can be a large number of years, or other health problems may begins and still shorten your time.

Only you can make this decision.    As we never know or notice the 'other people' in our life, not just immediate family members, but friends, neighbors, people we know and love from elsewhere in our life.  How our existence has far reaching effects on other people.  Perhaps yet on people we have yet to meet.

NOT an easy decision.

An argument could be made by asking your self as question.     Would you commit suicide?   In a way, declining medical treatment that can provably extend your life could be considered a for of suicide.   It depends which side of the argument you look at.

NOT an easy decision.    Fortunately you have the time to consider your options, ask many more people, long before making any decision.

Take Care,

Charlie B 53

[iolaire]

There are a few threads about this, here is one:
http://ihatedialysis.com/forum/index.php?topic=32450.msg495655

[Simon Dog]

What happens after that?

Death.

[kristina]

Does anyone know what happens from a legal and medical point of view if a patient states clearly in writing to a nephrologist that they don't want end-stage kidney treatment? What happens after that?

Dear Athena,
... what would happen if you don't want to receive end-stage kidney treatment, i.e. dialysis or transplant ? ... Unfortunately it goes without saying that it would mean the end of living ...  On the other hand, it could be a pretty clever idea to first find out how dialysis and/or transplant appeal to you and what sort of opportunities might come along whilst undergoing treatment ... You see, I have battled with ESRF for over 43 years and then I finally had to start dialysis ... and before starting my first dialysis-treatment, I was very sad, until I noticed that my dialysis-treatment was not the end but a continuation of my life and that I "only" had to introduce a new routine to my life from then on and 15 months later I am still going (touch wood it continues like that !!!) ... and please don't forget to think about all the things you would like to do and all the places you would like to see... and don't forget the many scientists all over the world who try every day to find better treatments in ESRF...
I send you my kind regards and I do hope you decide to go for the treatment and if I can be of any help, please let me know.
Best wishes and good luck from Kristina.

[Michael Murphy]

Athena, I have been on Dialysis for three years now, would I recommend it as a life style choice, of course not, but as a way to have a life it's not half bad.  I go 3 times a week with before and after activities it ties up about 18 hours a week.  That still leaves me 150 hour during the week to have a life.  While having to go on dialysis. Is not easy it's doable.  There was a time when most people could not do dialysis the sessions were longer and the machines rare. So most people with CKD died.  We are on the cusp of major changes, recently one team working on a implantable artificial kidney completed the first phase of testing, it was successful and next year are planning to start implanting units in human test subjects.  Today dialysis is becoming more a bridge to the future when there will be more and better treatment choices.If you need a reason to go on dialysis track the work being done on artificial  and cloned kidneys.

[hatedialysis2]

If you are in between stage 3 and 4 , there is the possibility that you can take steps  to preserve your residual kidney function and push dialysis off for a long time.  Just watch out for your potassium/phosphorus/calcium levels and get monthly labs.    Also check on your CRP (C-Reactive protein), and homosytein levels which are inflammatory markers that seriously affect your heart. Both can be remedied with natural supplements.

 Doctors were pushing me to go on dialysis much earlier than I needed/wanted to.  They all told me that I would be on it by 1997.  WIth a vegan diet, lifestyle   I did not get on till 2012.  I truly believe I could have avoided dialysis longer except I was exposed to an oil spill 6 months prior and I went downhill from there.  My body could not clear the toxin load from the exposure. I wound up vomiting for a week and could not hold water. I wound up in the hospital and my dialysis journey began.         

I dont know what your condition is like, but if your doctor is insisting that you go on dialysis now and you feel like you dont need to,   consult with various nephrologists.    check out Dr. Mackenzie Wasler's (nephrologist) book and his work on avoiding dialysis:    http://www.lowprodiet.org/kidneyDisease.htm.  It basically recommends going on a low protein diet and taking amino acid supplements.   The ones he recommends are very expensive you can get much cheaper if you search amazon for amino acid formulas.   

The thought having to go on dialysis is very stressful to say the least.  But it is an option if do need it to buy time till better options become available as was mentioned by  Charlie B53

[SooMK]

This is a decision without much of a window. You can decide to start dialysis and see if living with it is preferable to not living at all. Someone on dialysis is making the decision to keep living every time they go. We repeatedly see mentioned on IHD, as someone else wrote, that the idea of it is worse than the reality. Why are you thinking along these lines? I also believe that there will be new advances made now that there is a focus on it.

[Athena]

Hi everyone, thanks so much for your replies. I am not needing dialysis right now (touch wood) nor in the immediate forseeable future. But when I inquired with my Neph about joining a kidney support group of some kind to bond with others who are also battling CKD and to receive lifestlye advice about how to live with this - he just said to me that such groups are only available for people who are declining dialysis - hence, they're in palliative care. I just couldn't believe this. Coupled with the fact that I really get minimal next to NIL advice from my Neph about how to safeguard against further progression in an individualised meaningful way that takes into account my other complex chronic medical problems, I really am starting to feel desperate.

So I am just wondering what happens if I state well in advance that I am declining dialysis. Will there actually be more attention, concern and medical support for my existing state of kidney health? The way everything stands right now, everything is suspended until some future date when I am ready to die. This is unacceptable. So am just looking at finding some better way (if it exists).

[Simon Dog]

If you decline dialysis when you would be medically advised to start, you  can linger for a long time, since there will be some residual function.  Art Buchwald lingered for quite some time after decline the hose.

On the other hand, if you do dialysis for 6 months to a year, all the residual will have vanished, and stopping dialysis will result in a relatively quick demise (on the order of a week or two).

[Michael Murphy]

I have been on dialysis for three years and still have residual function left, there is a study that people with significant residual function are better of on twice a week dialysis, residual seems to have declined faster with the three time a week patients.  I am going to discuss this with my nephrologist at my next appointment.  As for advise to avoid dialysis I think a good renal dietician would be a good place to start.  In my case the nurse practitioner provided me with the best help.  Good Luck I hope your run on luck keeps you off dialysis for many more years. 

[kristina]

Hi everyone, thanks so much for your replies. I am not needing dialysis right now (touch wood) nor in the immediate forseeable future. But when I inquired with my Neph about joining a kidney support group of some kind to bond with others who are also battling CKD and to receive lifestlye advice about how to live with this - he just said to me that such groups are only available for people who are declining dialysis - hence, they're in palliative care. I just couldn't believe this. Coupled with the fact that I really get minimal next to NIL advice from my Neph about how to safeguard against further progression in an individualised meaningful way that takes into account my other complex chronic medical problems, I really am starting to feel desperate.

So I am just wondering what happens if I state well in advance that I am declining dialysis. Will there actually be more attention, concern and medical support for my existing state of kidney health? The way everything stands right now, everything is suspended until some future date when I am ready to die. This is unacceptable. So am just looking at finding some better way (if it exists).

Hello Athena,
I am sorry that your nephrologist cannot give you much advise on this, but there again, he is not alone... and unfortunately we have to find our own way in this, because nothing has yet been scientifically proven about this matter ... I was very lucky when I met this Professor of Medicine after my kidneys first failed and recovered a little in 1971 and he told me that if he were in my position, he would eat "easy digestable" vegetarian food (no garlic etc, but fresh vegetables every day and fresh fruit etc) and it worked for me very well from 1971/72 until December 2014, when I had to start with my dialysis-treatment ... Mind you, these days some Continental nephrologists have started to recommend a vegetarian diet for their patients to keep off dialysis for as long as possible and keep the body as well as possible ... All that worked well for me and I combined this vegetarian diet with regular walks and so I kept myself as fit as I possible could...
I send you my best wishes and good luck from Kristina.

[hatedialysis2]

If you are looking to avoid dialysis for as long as possible and in need of support , you will not find the answers from your nephrologist.   It's not in their training.  I don't know why you would want to worry  about having to tell your doctor that you are declining  dialysis in the future when neither you or he/she knows if that will happen.  I would check with him/her for lab work that's about the only support you can ask of him for now.  Find a good qualified naturopathic physician that understand kidney disease and has had success.  Exercise, acupuncture will do wonders.  Juicing organic vegetables will cure and reverse many conditions.  Surround yourself with positive people who are thriving to heal .  It's hard and stressful to visit your doctor and have them remind you that you have kidney disease and facing dialysis/transplant/death in the future.  If you keep focusing on what you don't want it becomes reality, a self fulfilling prof icy.   Focus on what you really want. 

Wishing you well.

[Athena]

If you are looking to avoid dialysis for as long as possible and in need of support , you will not find the answers from your nephrologist.   It's not in their training.  I don't know why you would want to worry  about having to tell your doctor that you are declining  dialysis in the future when neither you or he/she knows if that will happen.  I would check with him/her for lab work that's about the only support you can ask of him for now.  Find a good qualified naturopathic physician that understand kidney disease and has had success.  Exercise, acupuncture will do wonders.  Juicing organic vegetables will cure and reverse many conditions.  Surround yourself with positive people who are thriving to heal .  It's hard and stressful to visit your doctor and have them remind you that you have kidney disease and facing dialysis/transplant/death in the future.  If you keep focusing on what you don't want it becomes reality, a self fulfilling prof icy.   Focus on what you really want. 

Wishing you well.

You are 100% correct when you say that it's not in their training. That is what I've discovered the long hard way through direct experience. Nephrologists are simply end-stage kidney failure medico-technicians whose real job starts when your kidneys fail. They actually don't know how to slow or halt progression of this disease, nor do they really care to know. This last part may sound unbelievable to people who are not familiar with this disease, but it's so true. The more I investigate and speak to Nephrologists, the more this becomes apparent. This field of medicine only thinks in terms of dialysis & organ transplant and nothing more. As we all know, most people realise they are on the road to ESRF well before, even years before, it actually happens. So why there isn't some serious medical research to stop/halt or even reverse damage before it becomes serious is beyond me! I am appalled & I just can't seem to stop being appalled at this inaction.

"Find a good qualified naturopathic physician that understand kidney disease and has had success".

Well you tell me where such a person is located and I'll book the next plane trip to see them. I'm not kidding. If such people truly existed and there is evidence of their success in preventing people from reaching end-stage, then we'd all have heard about them by now. Unfortunately, the alternative health world is filled with all sort of charlatans and snake oil salesmen, even dangerous untried, untested stem cell research quacks in developing countries. I believe there may be new things to discover on the natural health front, I just haven't really had luck in finding anyone.

So I keep coming back to Nephrologists and therefore that familiar brick wall of disappointment.

But I am not giving up. There is always something new and valuable to discover. This is really a journey not a destination.

[hatedialysis2]

Athena , I wish I were in your shoes.  You have so much possibilities and options then when I was at stage 3.     For a dietitian, try Joan Hogan RD, she has a book : http://www.amazon.com/The-Vegetarian-Diet-Kidney-Disease/dp/1591202663 ,     For an ND try Kidneycoach.com Duncan Cappobianco.  Let me know if your interested in homeopathic resources.

[MooseMom]

Athena, I am so sad that you are not finding the help that you need from your neph.  Your frustration leaps from the computer screen.

The relationship between patient and neph is unique and largely depends upon the genesis of the renal disease, co-morbidities seen in the patient and the training/experience of the neph.

I was first diagnosed with fsgs back in 1992.  No one knew much about it.  I was living abroad at the time, raising my autistic child and didn't pay much attention.  Neither did my GP.  Once I returned to the US, my new PCP ran tests that showed that I was in CKD4 (this was in 2004).  We were all shocked.  I'd had no symptoms.  I was immediately referred to my neph who got me in to see a renal dietician and then prescribed the drugs the felt would slow the progression of my fsgs (cyclosporine) and to protect my body from the side effects of severe renal decline.  And this was after his very first assessment, and I quote, "I don't have much hope for these kidneys."  Well, at least he was honest.

Despite his gloomy message,  he was able to slow the progression of fsgs for 8 years.  When my egfr finally dropped below 20, he immediately referred me to a tx center and got me in to have my fistula installed.  He told me I'd probably be on dialysis in 6-12 months.  Well, he was wrong, and we continued to work together to keep me as healthy as possible.  He paved the way for me to get on another list, and I got my transplant thanks to his efforts.

In short, my neph was bloody brilliant.  He was my advocate, and while he has not found a cure for fsgs, he kept me going for FAAAAAR longer than any of us thought possible.  As a result of his efforts, I avoided dialysis altogether.

Now, I have been a member of this noble onsite group for a long time, and I know that my story is only that...MINE.  I know that everyone has their own difficulties with their variety of CKD/ESRD.  I also acknowledge your own frustration with the nephs who have "treated" you.  But I just want others who might be just starting out on this frightening path to know that there ARE nephs out there who WANT to keep their patients off dialysis for as long as possible.

A note:  my neph manages/owns/whatever his own independent clinic, so I am assuming that he'd have made money off of me if I had gone on dialysis.  He didn't have much financial incentive to keep my kidneys going.

Good luck to you, Athena.

[Deanne]

So I am just wondering what happens if I state well in advance that I am declining dialysis. Will there actually be more attention, concern and medical support for my existing state of kidney health? The way everything stands right now, everything is suspended until some future date when I am ready to die. This is unacceptable. So am just looking at finding some better way (if it exists).

My guess is that if you say something now, they'll either disregard what you say, or send you to a counselor. Nothing will change in your treatment plan.

[Charlie B53]

I highly suggest you read this thread


A patient with end-stage kidney disease avoids dialysis in favor of a “peaceful death,” but the reality is far from expectations.
Medical Myths: Unprepared For The End Stages Of End-Stage Kidney Disease
http://ihatedialysis.com/forum/index.php?topic=32633.0

It doesn't pull any punches.

At the end there is a couple of links for more information.

[Simon Dog]

That thread describes the path of someone who had declining renal function and needed to go an dialysis to live, and what happened as his kidney failure got worse.

I expect the path would be much quicker and more peaceful for someone who had been on dialysis for a few years; did not urinate at all and had zero residual function left.

[Michael Murphy]

You know what bothers me about this thread is the underlying theme that dialysis is so terrible it's not worth going on.  That as far as I am concerned is not true.  Many of the things that happen on dialysis are a pain in the butt.  However most people seem to survive and even do well on dialysis.  Am I sorry that I put off dialysis for two years, nope would have put it off longer if I could have.  Is dialysis fun, nope. Do I enjoy my 4 plus hours on the machine, nope.  However I still have a life, I spend about 18 hours a week on dialysis that leaves 150 hours to have a life.  When I was told dialysis was almost here I didn't talk to my doctor I talked to he nurse practioner and got diet advise.  The change that seemed to help me was a switch from processed foods to fresh meat and veggies.  More fruit and salad.  Is it possible to put off dialysis for several years, yep.  The other major consideration is the new tech that is going to arrive in the next decade.  Inplantable artificial kidneys, clone kidneys, wearable artificial kidneys.  All are in developement and some are do to start testing next year.  When I was young the question asked was wouldn't it be terrible to be the last person to die in Vietnam Nam.  Now I ask wouldn't be terrible to be the last person to die of kidney failure with a treatment so close.

[PrimeTimer]

You know what bothers me about this thread is the underlying theme that dialysis is so terrible it's not worth going on.  That as far as I am concerned is not true.  Many of the things that happen on dialysis are a pain in the butt.  However most people seem to survive and even do well on dialysis.  Am I sorry that I put off dialysis for two years, nope would have put it off longer if I could have.  Is dialysis fun, nope. Do I enjoy my 4 plus hours on the machine, nope.  However I still have a life, I spend about 18 hours a week on dialysis that leaves 150 hours to have a life.  When I was told dialysis was almost here I didn't talk to my doctor I talked to he nurse practioner and got diet advise.  The change that seemed to help me was a switch from processed foods to fresh meat and veggies.  More fruit and salad.  Is it possible to put off dialysis for several years, yep.  The other major consideration is the new tech that is going to arrive in the next decade.  Inplantable artificial kidneys, clone kidneys, wearable artificial kidneys.  All are in developement and some are do to start testing next year.  When I was young the question asked was wouldn't it be terrible to be the last person to die in Vietnam Nam.  Now I ask wouldn't be terrible to be the last person to die of kidney failure with a treatment so close.

MM: You have an awesome attitude, truly to be admired. Picks me up when I need it most, thanks!

[PrimeTimer]

I don't know if this will help Athena but perhaps a teaching hospital (if she lives near one) can help direct her to a good Neph and support group for those who are pre-dialysis. Teaching hospitals often hold studies and perhaps one of the professors (Nephrologists) would be interested in having her in a case study and from there, maybe contact could be made with other patients in the same boat. Altho my mother did not necessarily fit the criteria he was looking for, a Cardiologist still included her in his study anyway. Few years later, she turned out to be a vital part of his study. Anyway, sometimes at her monthly appointments they would have her sit with others who were part of the study "just to talk" and swap info and support. So this is why I am bringing the idea up. Hope you find the support you are seeking.

[Athena]

You know what bothers me about this thread is the underlying theme that dialysis is so terrible it's not worth going on.  That as far as I am concerned is not true. 

This is not a thread that asks for peoples' opinion on dialysis. Like I said before, I am not needing dialysis now or in the forseeable future. I am simply asking how would Nephrologists would respond to a patient in pre-dialysis who advises them that they will decline dialysis in the future. Whether there may be some medical protocols that they would follow in that situation, etc.

[Blake nighsonger]

Hi Athena, how are you? great question.
What or how would my nephrologist respond ? medically he would say that is fine but would recommend I think abut the advances in future.........../ no... I doubt that would be said.

How he would respond would be with a look of you big dummy, that's about as irresponsible as can be. Anyway.....

best to you,

Thanks, I figure you"ll figure it out if your really interested there, legally.
This has been fun writing to you.

 Blake n.

[Charlie B53]

Diet and moderate exercise can go a long way in reducing deterioration of your kidneys.

This has been proven by a few of the posters already in this thread.

Get with a Nutritionist well versed in kidney treatment to develop the best diet you can manage and also try to reduce stress in your life.  Between the two it may add a goodly number of years before your labs show that you may need to reconsider whether dialysis is a viable option for you.

As with everyone, I wish you well, always.

Take Care,

Charlie B53