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Author Topic: Advise needed please re whether or not I should write a letter of complaint or..  (Read 2397 times)
myporkchop
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« on: December 10, 2016, 05:41:06 PM »

Hi all,

I need advise please on whether or not I should write a letter of complaint to the hospital?
I am aware that I am grieving for my mum right now, so it may not be the best time and perhaps I should just think about it or just leave it altogether I really don't know what to do? Here are my issues below:

1. The nephrology doctors noticed that my mums kidney function was declining rapidly since 2015 yet they waited until a routine appointment at the end of April 2016 to inform her. By this stage her kidney function was operating at 11%.

2. The doctors said they were really sorry and for my mum to consider conservative care in the last few months of her life as she would have more quality or life over quantity.

3. I asked if there were any support groups or people the could put us in touch with who have had to face similiar news so we could talk with them about what option they chose and their reasons etc - but there was nothing (until I found this website).

4. My mum decided to give peritoneal dialysis ago and had to wait until July to have the operation.

5. We were told the wait to start training would be approximately 4-6 weeks max. My mum waited over 9 weeks to start training.

6. During this waiting period my mum was in and out of hospital multiple times with fluid retention/overload, shortness of breath, swelling/oedema and numerous other complicaitons.

7. The doctors informed us that the wait to start training was because other people were sicker than she was and they were made priority? We thought to ourselves who much more unwell does my mum have to be to start the training.

8. Once she started dialysis she was in and out of hospital 3-4 times within the 2 months she had numerous complicaitons with her health. The doctor said my mum would need to consider going into a home or long term hospital care as she was becoming more and more difficult to look after on my own. This really upset her. I was also willing to look after my mum at home. 5 mintues later a nurse came in and talked about various rest homes. We never had a chance to comprehend what was said.

9. The doctor told me I shouldn't be staying at the hospital every night and should go home to sleep - I was there each night because she was in so much pain and had a fever for 3 days and I was really worried. No one else minded me staying and sleeping on a chair next to her bed.

10. I asked the doctor for stronger pain relief for my mum but they said there was not much they could give her due to her kidneys - she was in so much pain.

11. As I was told to go home I was not there for her when she passed away.

12. When I arrived at the hospital my mum was in a room all by herself - in our culture someone must be with them at all times, I was 10 minutes away.

13. My dad is angry that no one tried to ressusitate her or keep her alive long enough for family to arrive.

Please help, I don't know what to do or whether this is all grief. But there are some things I would like answers to. I rang the hospital and they said I would have to lodge a formal complaint - however I don't want to as I thought the staff were excellent and cared for her really well, but there are some things that could of been done better.

Thank you
« Last Edit: December 10, 2016, 05:47:18 PM by myporkchop » Logged

21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
Michael Murphy
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« Reply #1 on: December 10, 2016, 06:58:10 PM »

Hell yes.  The facts don't look good for the people who were supposed to look out for her.  Instead of stabelizing her on hemo to carry her to PD they let her go from on
e emgency to another.  The stress on your mothers body must have been tremendous.  Too much fluid in her body strain on heart, remove a lot of fluid strain on her heart.  I would say they were trying to kill her but my guess is shear incompetence.
« Last Edit: December 11, 2016, 11:55:41 AM by Michael Murphy » Logged
Charlie B53
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« Reply #2 on: December 10, 2016, 09:15:45 PM »


I think I have been Blessed with caring Dr's that began pointing out my reduced kidney functions long ago, when I was still in the 50% range and began leaking protein.  Regular visits charted the decline for a lot of years so it was no surprise when my legs began swelling.  Dr began talking about Dialysis would eventually become necessary.  I had plenty of warning, plenty of time to learn what was coming.  No surprises here other than the increased speed of decline the last few years.

I feel you Mums Dr's didn't bother until it was way too late for much.

Whether their action, or inaction is actionable is difficult to tell, every jurisdiction can have their own standards of care. There may be some Medical Review Board that will review a case, read through the patient history, patient record, perhaps requesting copies of any other Dr records and assess whether responsible decisions were made in a timely manner.   If it can be clearly shown based on lab reports and errors of omission in patient records and Dr's note that they failed to act they may be subject to shanction, perhaps a period of probation, even suspended for a time.  But this may be very difficult as many Dr's are unwilling to cite their college.  It's like finding one attorney willing to file malpractice against another attorney.  They are rare, no other attorney will associate with them, they are shunned.

I have no doubt that if your Mum had been started months earlier she would have had the time to dry out, gotten better, and still be here today.  But then again I also believe that when it is our time, it is our time.  No matter where we are, no matter what we are doing, we will go.  Car crash, heart attack, fatal fall, something, anything.

It is VERY difficult to lose a Loved one.  We search, seeking to blame.  We have to learn that time has past for her, and there is now nothing left but to hold onto the memories. 

Seeking any sort of 'satisfaction' or retrobution upon others that we feel may have contributed to the speed of her demise can be a very stressful endeavor.  Stress that you do not really need right now.   Although this may be able to be used as a very serious learning tool as far as to when treatment should have began, that may be the only effective change you may be able to promote and help someone else to later avoid such an early death.  But it cannot ase your pain.  This is not easy.  Forgive and look forward.

Sorry for another book.

Take Care,

Charlie B53
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Michael Murphy
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« Reply #3 on: December 10, 2016, 11:29:24 PM »

Nothing will bring the mom back but the reason to raise hell is for the next mom, the way your mom was treated with a total lack of respect , is probably not the first these people have sped patients on the way to a early grave.  Hopefully if you pursue this she may be the last.
« Last Edit: December 12, 2016, 01:36:30 AM by Michael Murphy » Logged
Charlie B53
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« Reply #4 on: December 11, 2016, 04:58:03 AM »


Thank You Michael.

Sometimes I can't shut up and condense words to a simple concept.

You've manage to say a lot of what I meant, straight to the point, easy to understand.

Thanks!

Charlie B53
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kickingandscreaming
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« Reply #5 on: December 11, 2016, 06:55:11 AM »

I want to add that now isn't the best time to be thinking of retribution.  Now is the time for grieving, because whatever else you choose to do, is against a ground of grief.  I think what I would do, if it were me, would be to document my feelings and my experience while it is still fresh.  On paper.  And then wait until you can see more clearly before you take any action (if you ever do). 

From what I heard from you while your mum was going through all this, it sounds like she received sub-standard care.  Not sure if it rises to the level of legal action, but surely sounds like negligence and as if they had written your mother off a while ago.  Perhaps they saw that she was too sick.  Maybe they felt she lacked the ability to care for herself properly.  I don't know what they were thinking.  At the very least they probably should have offered her urgent Hemo to manage her fluids.  But then again, maybe she wasn't a good candidate for a perma cath.  Lots of question marks. 

First grieve.  Then decide what you need to do next.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Michael Murphy
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« Reply #6 on: December 11, 2016, 12:01:56 PM »

If there was a reason for this course of treatment they should have told the family and given the choice of putting her mother through this of just let her go.  But  instead they treated them 'this women to a series of medical treatment that was not designed to help her but just not help her with a future.  If this occurred in the US I would take her medical records to CMS and let them investigate.  Besides revenge or a law suit there is the next mother theses people will treat.
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myporkchop
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« Reply #7 on: December 12, 2016, 01:29:05 AM »

Thanks so much for your replies. I appreciate it. I will write this letter but perhaps give myself sometime to grieve then talk my letter through with a few people to get advice on how best to proceed. I need to have a clear head so i will write but hold on to it until i am ready to proceed with it. Thanku very much xx
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21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
cassandra
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When all else fails run in circles, shout loudly

« Reply #8 on: December 12, 2016, 02:45:35 AM »

Good plan. We're thinking of you.

Lots of love and strength, Cas

      :cuddle;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
smartcookie
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« Reply #9 on: December 12, 2016, 06:54:20 AM »

I agree that you need time to grieve, however the doctors and hospital made decisions that should have been your mom's and the family's to make.  For instance, if you wanted aggressive care over conservative, you should have been able to get it.  I think it is ridiculous to have your mom wait for PD surgery because there were cases more pressing.  Your mom's case seems pretty pressing.  When you have taken the time to grieve, I would definitely write a letter.
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
myporkchop
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« Reply #10 on: December 12, 2016, 02:14:39 PM »

Thank you all. I will xx
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21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
Charlie B53
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« Reply #11 on: December 13, 2016, 05:22:50 PM »


I don't know about the hospital there.  I've been so fortunate that the VA Hospital and the University Hospital work well together.  When the VA couldn't get me in an OR they sent me to the Uni and had me done the next day.

Gentleman moved into my room day before I got out was tx from a 3rd hosp to the Univ overnight then into VA.  So there must be some program of making sure these people are cared for in a timely manner.
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CW
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Yeah .............That's me!

« Reply #12 on: December 13, 2016, 08:00:28 PM »

First and foremost I want to offer my heartfelt condolances for your loss, losing Mom hurts no matter the circumstances.

Short answer to your question is yes. My reason is that I have been an ESRD patient for a long time and I have seen health professionals behave in this way before. The only way to get comprehensive care when it is not provided is to demand it, fight for it, yell and scream till you get it. Sometimes you get lucky and you get health professionals that provide wonderful, sensible, compassionate care; but when they don't we must call them on it so they either change their behavior or at least we start to generate a paper trail to establish a pattern of behavior.

I know this does not help Mom out now but it helps protect patients in the future or it can help hold lazy, ignorant, evil medical staff responsible for their actions. Simply if it is not documented than it does not exist.

Before you submit your complaint find out the official complaints process and if you feel like it find out the licensing or regulating agency for the medical facility your Mom was in and also the licensing board for doctor's in your area. Follow the official complaints process and escalate it anytime you can. You can also write complaints to the other authorities I mentioned while it is probably not part of the official complaints process but you never know whos attention you may get. Make sure your official complaint has times and dates and any supporting paperwork you can get (discharge documents, email reminders for appointments, test results etc.). Communicate via email or written letter to document your contact a person can always deny a phone conversation and it can be illegal to record phone conversations without consent.

Be certain to keep copies of all of your complaints along with records of when, where and who you submitted them to. This may seem like a bit much but believe me it can come in handy down the line.

We all need how to know how to protect ourselves, loved ones and friends and sadly this is necessary in healthcare sometimes. I wish you peace and healing for your heart be well and good luck!
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20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
myporkchop
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« Reply #13 on: December 14, 2016, 03:04:06 AM »

First and foremost I want to offer my heartfelt condolences for your loss, losing Mom hurts no matter the circumstances.

Short answer to your question is yes.
I know this does not help Mom out now but it helps protect patients in the future


Thank you CW. I spent tonight writing letters to complement some of the staff who have been excellent, and also complemented the nurses from home dialysis training as they too were wonderful. It made me feel good to do that as I wanted them to know how much we appreciated them.

I will take my time to write my letter of complaint as I want to make it as clear as possible and accurate. It may not be complete until the new year but at least I will have time to think.

I agree with paper trail and will keep copies of everything.

Thank you for your condolences.
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21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
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