Declining Dialysis

[Athena]

WOW! The renal social worker seems to be able to read minds. She looked at me when we were 'chatting' about things and said, "But if you were to state that you would decline dialysis in the future, there would be extra medical protocols that your nephrologist and team would need to follow". Apparently, they would treat your CKD differently if you were marked as a 'palliative patient" - the suggestion was that they would try harder to avoid your death from kidney failure. The nephrologist has to conduct a kind of psychiatric "fit to decide" examination and would have the final say in whether they would resuscitate or not with dialysis in the event of AKI or ESRF.

If I was found sane and my decision was accepted, I move into a palliative care type of status.

I now am wondering whether I could possibly execute such a strategy in order to get better treatment while I am still healthy enough?

All I really want is to be saved from ESRD, that is all. As far as I'm concerned the existing standard treatment of 'wait till the patient's kidneys fail' before starting renal replacement is palliative care.

I wonder whether there's ever been anyone else who has pondered this question before?

[kickingandscreaming]

I actually think that palliative care, in this instance, AKA conservative care, means they will just keep you comfortable (or try to) as you kidneys fail.  I don't think they do anything that will prolong their function.  Actually, as my kidneys were failing I think I was getting that kind of treatment.  Tweaking things here and there to try to mitigate the damage.  Add bicarb. Start a Tum, Stop a Tum. Add calcitriol. Stop calcitriol. etc. Sort of "playing" my blood work. I don't think there's any magic that they do to improve or reverse the condition.

As my kidneys were failing, I as cock sure that I would go the hospice route.  No dialysis for this kid.  That's why my handle is "KickingandScreaming."  Then I decided that I would stick around as long as my dog (now 14+years old) stayed with me.  I would see how PD treated me and then decide if I want to stick around longer.  My dog is still with me, so I have yet to make the ultimate decision about whether I want to spend the rest of my days in one form or another of intervention. The more I read, the less I think that dying in hospice with kidney failure is a "good death."  But then again, probably very few versions of death are all that great.

[Athena]

I actually think that palliative care, in this instance, AKA conservative care, means they will just keep you comfortable (or try to) as you kidneys fail.  I don't think they do anything that will prolong their function.  Actually, as my kidneys were failing I think I was getting that kind of treatment.  Tweaking things here and there to try to mitigate the damage.  Add bicarb. Start a Tum, Stop a Tum. Add calcitriol. Stop calcitriol. etc. Sort of "playing" my blood work. I don't think there's any magic that they do to improve or reverse the condition.

As my kidneys were failing, I as cock sure that I would go the hospice route.  No dialysis for this kid.  That's why my handle is "KickingandScreaming."  Then I decided that I would stick around as long as my dog (now 14+years old) stayed with me.  I would see how PD treated me and then decide if I want to stick around longer.  My dog is still with me, so I have yet to make the ultimate decision about whether I want to spend the rest of my days in one form or another of intervention. The more I read, the less I think that dying in hospice with kidney failure is a "good death."  But then again, probably very few versions of death are all that great.

K&S, I don't think you were getting palliative care as such. That is just standard CKD treatment care - they play with your blood work while waiting for your kidneys to fail. That's all there is. The only drugs that have been proven to slow progression are the ACE inhibitors & ARB blood pressure drugs. Did they place you on one of those?

In terms of this interesting question I've raised, I think there may just be a little more 'blood work analysis' to keep you more nice and regular in your labs, that is all. It may just not be worth it if I have to see one of those psychiatric types to be assessed by them. (I could possibly have some fun in the process though. Imagine if they kept asking me 'do you have suicidal thoughts', and I kept repeating 'no I want to live desperately, I just don't want to go through kidney failure yet they tell me that is what I must go through, so I think it's the doctor who wants to kill me, truth be told!" There could be some fun in this and I might achieve advocacy for a cure for CKD like I've never dreamed possible before. Sorry, me trying to be funny here).

K&S, I'm so glad your dog is with you. Wouldn't it be fun to go visit a animal shelter and find your next companion who wants to be rescued and be given a new home?

[kickingandscreaming]

The only drugs that have been proven to slow progression are the ACE inhibitors & ARB blood pressure drugs. Did they place you on one of those?

I have tried ACEi's and ARBs and both had adverse effects on me.  Lisinopril nearly killed me with angioedema.  Diovan raised my creatinine. So I couldn't use any of the BP meds that allegedly slow the disease down.

Wouldn't it be fun to go visit a animal shelter and find your next companion who wants to be rescued and be given a new home?

Well, there's the rub.  I would not feel in good conscience to take on the care of a new dog for fear that my life would be too short or too caught up in the medical vortex to be a responsible dog parent.  I'm old and I'm sick and I'm alone.

My only option that would fit my ethics and my love of dogs would be to become a foster parent to an elderly dog (perhaps indefinitely). But then if I outlive the dog(s) I'll be dealing with a lot of loss.  And if the dog outlives me then I would feel very guilty (even if I'm dead).  I am such a dog person that I doubt that I could survive in a meaningful way without a canine companion by my side.  But I love and respect them too much to just do it for my own selfish need. So it's a quandary.

[Charlie B53]

I didn't know much about my kidneys over the years watching them decline.  I was too busy paying attention to the worthlesss things in life.

Many people will say "Had I known THEN..."

Well, to an extent, I did.  I just didn't do anything about it.

There are many here that DID do something,  they educated themselves about how their diet placed the work load on their kidneys.  That by changing their diet the reduced the stress on their kidneys and actually slowed the rate of deterioration, extending their time before needing dialysis by a great number of years.

You still have the time.   You can learn, change what you eat, and give yourself much more time before having to make the decision to accept dialysis or not.

[beckums70]

If your GFR is 10% or less your nephrologist would likely refer you to hospice/palliative care.  He might continue to follow you for a while but if you are refusing treatment there would really be no reason for him to continue seeing you.  Most patients who are dialysis ready and refuse treatment are immediately referred to hospice for management of symptoms of urea, fatigue, pain and other discomforts that come with untreated and advanced ESRD. 

Hospice is covered by Medicare A and B and you would receive care in your home from a Nurse, Nurse's aide, Social Worker, Chaplain (if you choose), Volunteers (If you choose) and the hospice Medical Director.  You automatically qualify for hospice if you are ESRD and refuse dialysis or transplant.

[Charlie B53]

During the course of my kidney decline the Dr had prescribed a number of medications.  Way back then I wasn't too good at taking pills out of bottles so there are a great many times I didn't take all as directed.  At one point the pharmacist gave me a week at a time pill box.  Each 'day' had 4 boxes.  Once I started using this I rarely ever miss a dose.    This may have made some difference if I had began so much earlier.  Now way to know now, it's history.

K&S, you may consider becoming a 'Foster Parent'.   Many times animal shelters become over-crowded and need people nearby to take in a temporary animal until they have space available, or the animal gets adopted out.   We have done this with a pregnant cat, raising the babies until ready for adoption.   A couple of times.       Or volunteer a couple of hours to a shelter.   You know how loving so many of those animals are to anyone that is willing to show them a little care.

There is so much yet to do and see.  I cannot see myself voluntarily giving up PD as long as it is working for me, giving me the opportunity to keep enjoying life with a goodly measure of 'normalcy' other than having to make the simple connection to my Cycler every night.

Take Care Everyone, and keep on doing pretty much what you want to,

Charlie B53