ESRD Refusing dialysis

  1. I have a couple of questions about ESRD. I'm in Canada. My mother in law is 80 yrs old and lives with us. She was diagnosed with kidney failure in March when she went into a-fib and had a quick trip to the hospital. They gave her 60mg lasix IV as she was in acute CHF. I know they needed to do something about the CHF but as a result her kidney function went from 37% to below 10%. The question of dialysis has been addressed and yesterday she was asked if she wanted to start dialysis and after much discussion she has decided not to. She has also made herself a DNR.

    Her creatinine is 432 umol/L. Norm is 60-110 umol/L. The baseline for dialysis here is about 400 umol/L.

    So my question is this: At what point do you usually see the more pronounced S/S of toxicity? She has been told that she has weeks left to live. Her HGB is 84, and she is recieving IV iron and s/c EPO to bring this up. She is sleeping more and is very itchy all over. But when she is awake she is more active than she has been in years.

    I guess I'm asking for someone to look into a crystal ball and tell me how long she has and reassurance that it will be a comfortable death. I'm working full-time and so is my husband. My hubby is stressed out to the max, and I am getting there. My M-I-L has had about 5 appt's a week for the past 3 months (now down to a more manageable 1 appt a week), mostly scheduled on my days off. I'm looking at taking time off to help her and to destress a bit but I may wait as she can still cope with her ADL's on her own and she has people coming in for her bath and footcare and weekly blood work is done at home by a lab tech that comes to the house as she is on coumadin.

    Any insight would be greatly appreciated.
  2. Visit Morning-glory profile page

    About Morning-glory

    Joined: Nov '04; Posts: 276; Likes: 168
    Psych RN; from CA
    Specialty: 12 year(s) of experience in Psych, M/S, Ortho, Float.


  3. by   Rook
    I'm not a nurse yet but I worked w/ Dialysis patients for 3 years as a Research Assistant and I'm a MT (lab tech) so I might be able be able to help you out.

    Unfortately the doctors are right I'm guessing at the most she might live maybe 2 months tops but I would say probaly a month.

    The lab results in Canada are a little different from here so I'm guessing that her creatinine is 4.3 mg/dl (normal 0.6-1.3 mg/dl) and her Hgb is 8.4. Usually patients in ESRD have Hgb's between 8.0-9.0 (80-90?) so that's normal. If it goes over 9.0 I think they cut the EPO down because its so expensive.

    Well first off if she's oliguric and/or the Lasix isn't working (< 400ml urine day) then she'll probaly develop severe edema, which may make her gain so much weight that she'll be bed ridden. The edema could cause vasoconstriction and increase the BP and you could have problems from that. 2nd problem is her BUN will increase (maybe around 10-20mg/dl day). Normal BUN here is (10-25 mg/dl) when the BUN reaches 110+ she might get really sick and start developing severe neasuea (can't spell). As the BUN keeps increasing it eventually becomes toxic (I think if it builds up it crosses your blood brain barrier perhaps causing a coma) and can cause alot of problems. Plus your electrolytes will increase, potassium being the main problem causing an severe uremic acidosis and heart dysfunction.

    The itching wont stop. Patients in severe CRD or ESRD always have high phosporous levels. That's whats causing the icthing and only dialysis will bring it down to normal levels. There is an over the counter cream you can buy (I forget its name something like its called Eurcurin?) that might help a little.

    All that being said I can't tell you that its a easy way to go however I could be wrong probaly any doctor/nephrologist could tell you more. Maybe she go into a coma or her heart will suddenly stop before the symptoms get out of control, I guess that would be the best?? (I don't mean it like that) bet.

    Patients on hemodiaysis are often overwelmed because when you need dialysis you often have other problems (diabetes, heart etc.) and it sometimes makes you throw your hands up in the air and just forget about trying it. Though after a month or so you get used to it even people 80+ years old.

    Also has any doctor/nephrologist talked to her about trying Pertioneal Dialysis? You can do it at home and people on it tolerate it very well and the only surgery she'll need is to get a shunt put into her belly. I met a few people over 50 that even have a full time job on PD. She might even feel better on PD than she did when she was in CRD. I even had a patient in one of my studies who lived in the middle of nowhere West Virginia by herself, was legally blind (20/200 vision w/ glasses) and over 80 years old and hooked herself up on a PD machine every night. Plus sometimes you can do PD overnight while you sleep. Good Luck, I'm sorry to hear about what your going through. My only thought would be to try to get in to see a Nephrologist and try to convince her to at least give it a try (even with Hemodiaysis you just get surgery to put a fistula in your arm or a central line in your neck) and she if she doesn't like it she could always stop treatment. I wish you the best.
  4. by   Morning-glory
    Thank you so much ROOK,

    I really appreciate the input. My M-I-L has not left her house in 25 years and now that she has to go out almost everyday, it increases her anxiety to the point of incontinance of stool and urine. It also causes sleeplessness every night before a test. It's not that she is agrophobic, but that she is so stressed by the fear of incontinance and more bad news. She is not depressed. (I'm a psych nurse after having been an ortho nurse for years). She just hates going out and being dependant on others to get around. She uses a walker at home but is in a wheelchair when out. I tried Ativan 0.5 mg, but she slept for 4 days.

    She is such a sweet woman that to have her that anxious is just too much for any of us to cope with. She does not want any further big treatments. The thought of dialysis, despite all the teaching that she has recieved is just too much for her to tolerate. She has got the IV iron (one tx left to go), B/W q weekly, and the EPO q2 weeks. We do have an appt next week with a dialysis nurse practitioner who will walk us through the whole process. I will also be calling her case worker (RN) and let her know that we are going into the palliative phase. She is getting Serax 10mg to help her sleep PRN. GP is very involved too.

    Her only fear is that when she dies, she will miss all of us.

    So I just pray that death will come like a lamb in the night.
  5. by   Hellllllo Nurse
    Quote from Jacquie RN
    .......So I just pray that death will come like a lamb in the night.

    I am a former hospice nurse who took care of quite a few "refused dialysis" pts. I am currently a dialysis nurse. I have hade a few dialysis pts who've been on tx for some time, then decided to D/C tx. Some lived for only a couple of days, others a couple of months.

    With proper hospice mgmt, nearly all had an "easy" death.

    Prayer said that it be so for your MIL.
  6. by   Farkinott
    The dear lady could last weeks and weeks depending on her oral input. She is to be admired for making such a strong decision as a life on dialysis (especially for those older people who have lived a full life) is nothing but unnecessary maintenance. She probably has more energy now due to the epo and the fact that (from the facts provided) seems to have peace in her mind.
    Love her and suppot her but try to remember that death is a natural part of life.
  7. by   Morning-glory
    Thanks everyone.

    Just today when she woke up, she looked like she had the wind kicked out of her. I guess she had a long night despite the Serax. I'm starting to feel overwhelmed.

    I know that we can do this, but it is really taking a lot of energy out of all of us.

    Thank you all for your support.
  8. by   Morning-glory
    Hi All, it has been a long time since I was here. It has been a busy year. My Mother-in-law passed away on the 28 March 2007, almost a year later than anyone could have expected. She died at peace, at home with her son (my DH) her daughter and I there. About 3 weeks before she died she told me that she had been throwing up everything including water for about 2-3 weeks. I started her on Zofran s/c. The problem then was that I was still working and DH was home. He is an Army guy and able to give s/c (with some teaching by me), but he was very uncomfortable with the thought of hurting his mother. I was at work that day and decided that there was a reason that I was working full-time. Turns out I had almost 600 hours in my sick bank so I took 5 weeks of them as family medical leave starting the next day. They were really fantastic about it too.

    She remaind "with it" until 4 days before she died. Her vomitting was more just a spit up of stuff. Nothing dramatic, no nausea. The zofran helped but she wasn't taking in very much by then anyways. Before she moved in with us she had been a heavy drinker. One of the conditions with moving in was that there would not be any alcohol in the house. As she had been in the hospital for 4 days, she was past the detox stage. The last thing she did have before going into a coma was a shot of rum!! It actually stopped the vomitting and relaxed her enough to finally let go. She rallied a bit on Wednesday, said goodbye to everyone and died while we were having supper on Thursday night.

    I had gotten up to go to the BR and had a look at her on the way by. Her breathing had changed and was a bit laboured. I went to get my sister-in-law to help me reposition her. When we got to her a minute later, she had died.

    A better death, I could not have wished for.

    I wound up taking some more time off, this time for me, in May. It was really hard to go back to work, but things are getting back to normal.

    Thank you all for your support.
  9. by   Hellllllo Nurse

    I'm very surprised to learn your mil lived so long without dialysis.
    I'm very glad for all of you that is was peaceful.
    Last edit by Hellllllo Nurse on Jul 12, '07
  10. by   DeLana_RN

    Thanks for the update.

    You are a loving family and have helped your MIL live her final months in a caring environment; she also had a peaceful death.

    I'm sorry for your loss.

  11. by   Morning-glory
    Thanks. It has been a long but interesting journey that I will keep with me for the rest of my life. Made me a better nurse.