Trust issues

[MooseMom]

I can't sleep because my mind is too busy trying to make sense of something that happened today, something that makes me dread becoming a vulnerable dialysis patient who has to trust other people to place some value on my life over and above the value they place on financial gain.

My father died 9 years ago; my mother died last year after being on dialysis 5 years.  My father had left everything to my mother, which is how it should be.  My mother, knowing how expensive dialysis and all that goes with it can be, left me the bulk of her estate.  She had named her husband (she had remarried) as executor, but he declined (he is elderly and fell ill).  She named me second, but I declined because I live on the other side of the country.  She named our family attorney as third executor, and he accepted the role.

This attorney has known my parents since the 1990s and has handled all of their affairs.  He was very conscientious about documenting all activity regarding my mother's estate and forwarding same to me.  He knows about my medical situation and knows why my mother left me her estate.  He has been easy to work with, and I trusted him.

I got a letter from him today outlining his fee/hourly rate/numbers of hours worked along with documentation supporting these figures.  Attorneys are not cheap!  But I felt it was fair.  However, as his letter continued, he proceeded to enumerate all that he had done for my family (along with what he had charged for these services) and then to opine that this warranted a "good results" fee that is about 130% ABOVE his total hourly charges.  He furthermore wants to discuss a payment plan that would be "beneficial to me", ie, he wants this extra fee to come from me directly, not from the estate.

Now, my husband happens to be an attorney, and he says that he has never heard of anything like a "good results" fee.  He knows many attorneys in private practice (my husband is a city attorney and does not deal with private estates), and he intends to make inquiries to see if this is somehow normal or customary practice among estate attorneys.

Have any of you ever heard of such a thing?

So, why do I bring this up on IHD?  Because it strikes me that if I cannot trust my family's own attorney, how am I going to trust those people who are supposed to make sure I get good dialysis?  I heartily resent being put in such a vulnerable situation, and my rage at having to deal with kidney disease just increased exponentially.  Like the rest of you, I read the Propublica reports and the blogs and the message boards filled with stories of low staffing, low morale, low wages, low regard and the resulting low survival rates.  In the space of one day, I have become distrustful of the motives of everyone on planet Earth.

This attorney KNOWS that the money left to me is for my health first and then for my autistic son's future; he and I discussed this at length.  But he has treated this with such vast disregard that I am truly baffled.  Maybe I am naive in my bafflement; maybe this is the way of the world.  It certainly appears to be the way of dialysis, where money is more valued than patients.  And I am going to be just another walking, talking money-making opportunity for yet another clinic.

When you go into your clinic for your dialysis treatment, do you trust the small army of people who are dictating the terms of your care?  Do you trust them with your life?

[Rerun]

Hi MM, Rerun here. 

Pay what you owe and tell your Attorney his services have been SO Good that you no longer need him.      Things should be pretty much settled with your parents estate.  Your husband can take care of the rest.  You don't need to be taken advantage of.  Don't argue because that takes his time which he charges for.

If you do home dialysis you will be safer than in the clinic.  But, I have to go in center and no I don't trust them.  That is why I watch every move they make.

You should "say" that you are going to do home dialysis just so you get the classes and then you will know more.  You can always back out of going home.

Yeah, fire the Attorney and take your life into your own hands.  You can only trust you.   

[texasstyle]

I would have to think that anything entrusted to your attorney would automaticlly come with expected "good results" right?  I'm sorry you're going through this. PLease don't give up on trust comlpetely yet. There are STILL go people in this world.

[willowtreewren]

MM, I agree with Texas. There ARE greedy people in this world, but that does not mean that there are not many others who are trustworthy!

Unfortunately, the ones who hurt us make it hard to open our hearts to others. 

Discontinue use of this money pit and move on. 

Aleta

[Stoday]

He's asking for a tip. And telling you how big the tip should be. 

Whaat would you say to a waiter who asked for a 130% tip?

[tyefly]

Unfortunately  that life ...  All People are greedy,,, and then compete all the time....  I think that is human nature...  well maybe that is for all living things... my dogs are greedy and they compete all the time...  You should be done with the Attorney....   

Now on with the main subject.....  trust and Dialysis....  I think there are those people who trust  most everyone and go thru life on the side lines..... just take what comes at you.... while there are others who question.. I am one of those who question.... I have always question most everything in life....sometimes that is good and other times I drive people nuts....  we have to trust our medical people to a certain point... when you start Dialysis you will have to trust that they will get you thru the first few days which can be very nerving... and you hope you get people that at least try to do their best...some are better than others..  I was lucky to have the same person cannualate me everytime when I started D.... many do not... she establish buttonholes and then I took over...  I think we need to trust but be very informed..... You are very inform on Dialysis.... you will do fine.... its the unknown that drives a person crazy.. you are going into this with more knowledge than most.... I admire you for learning..  after you start D you will find that its not fun but its not as bad as you may have anticipated... that's pretty normal...  Dont worry....  trust is often earned...   I have learned to trust myself first and other second...   You are going to do fine....   I understand the anxiety that you are experiencing....  I was there before I started.... Now   I have been on D for 1.5 years and its pretty simple and boring for the most part....  Now I have replace my Dialysis anxiety with the transplant issues....  and I know I will get a transplant soon  and then I will me pretty free from all of this and it will be one of those past memories.... you will do the same... dont worry..... you are going to do better than most.... your just that type of person....

[Ang]

when you go to clinic for dialysis treatment you will quickly become aware as to you feel comfortable dealing with.

the easiest way for you to be content with your treatment is to undrstand  why and how things are done.

ask questions WHY WHY WHY is this that and the other being done

[jeannea]

Remember trust but verify? I trust my nephrologist a lot after 20 years so that helps. But I always stay educated about what my treatments are. When I did hemo I would make sure that I got my potassium bath since it was prescribed. I always knew my lab results. Etc. You will learn at the center who you can trust best. Of course centers need to make money but many of the workers are just out to do their best. Hang in there. Hemo won't be as scary as you think.

[MooseMom]

I'm just very disappointed in this man.  I'm not sure that what he is proposing is even LEGAL, nevermind just ethical.

There is a little bit more to this story that makes it even more galling, but I don't want anyone to get hurt falling out of their chairs from disbelief should they hear the rest of it, so for your own protection, I won't go into it.   Suffice to say that this is not the first person who was in a position of trust that has come around sniffing for money, ignoring my precarious hold on health.   

As for dialysis, it is just in my nature to be as informed as possible, so I have no problem with self-advocacy and verification.  But no one dialysis patient can know EVERYTHING or DO everything.  I know I will have to trust someone sometime; I've never really had "trust issues" before.  I've been on this road for 7 years now, and while I've always kept an eagle eye out in a bid to protect myself, I don't recall ever mistrusting individual health care workers I've been in contact with.  I am well aware of the unethical behaviour of LDOs and pharma, of the Mr. Thiry's of the world, but I never thought to be wary of my neph or his nurse or the myriad of others I have to deal with on a regular basis.

Anyway, I'm just still in shocked mode at the moment, but I'll gradually find my equilibrium just as we always have to do.  I'm just very disappointed.  Not much surprises me anymore, but this did.  This isn't as catastrophic as kidney failure or autism, so in the grand scheme of things, it's just one more bump.  But it's a particularly bumpy bump...

Thank you for all of your replies.  I appreciate it.

[jbeany]

Okay - information to think about for the lawyer.  The American Bar Association has Model Rules for Professional Conduct.  Attys who violate these rules will be disciplined by their state bar, and, if the violation is severe enough, can be disbarred and unable to practice law ever again.  Some states have adopted these rules by making them law.  I can log onto Westlaw and tell you if the state he is in has done so if you provide me with the state.

 Here are the ethical rules regarding fees:

Client-Lawyer Relationship
Rule 1.5 Fees

(a) A lawyer shall not make an agreement for, charge, or collect an unreasonable fee or an unreasonable amount for expenses. The factors to be considered in determining the reasonableness of a fee include the following:

(1) the time and labor required, the novelty and difficulty of the questions involved, and the skill requisite to perform the legal service properly;

(2) the likelihood, if apparent to the client, that the acceptance of the particular employment will preclude other employment by the lawyer;

(3) the fee customarily charged in the locality for similar legal services;

(4) the amount involved and the results obtained;

(5) the time limitations imposed by the client or by the circumstances;

(6) the nature and length of the professional relationship with the client;

(7) the experience, reputation, and ability of the lawyer or lawyers performing the services; and

( whether the fee is fixed or contingent.

(b) The scope of the representation and the basis or rate of the fee and expenses for which the client will be responsible shall be communicated to the client, preferably in writing, before or within a reasonable time after commencing the representation, except when the lawyer will charge a regularly represented client on the same basis or rate. Any changes in the basis or rate of the fee or expenses shall also be communicated to the client.

(I skipped the last section, but the rest isn't really relevant - it's about contingent fees that are only collected when a case is won - what they do for injury lawsuits.)

So, given the factors listed, is it a reasonable fee?  Did he notify you in writing of this "results fee" in a reasonable time?  Was anything he was required to do novel or difficult?  Can you ask any family or friends in the area if they have ever heard of such a thing to find out if it is "the fee customarily charged" there?

Lastly, I searched "good results fee" on Westlaw and came up with zippy, so he's making the term up on his own.  I've been studying paralegal courses for a year now, and NO ONE has ever mentioned such a thing, and we've discussed billing a lot, given that paralegals are frequently the ones in charge of billing.
Again, as a paralegal, I can't tell you any legal advice - just information about your options.  What you do with it is up to you, but writing a refusal to pay above and beyond, using the language straight from the ethical rules he's supposed to be following, is certainly one of your options!  You could also counter offer by agreeing that you are willing to tip him, but name your own percentage. 

     "Dear Greedy SOB, I think you are worth the same 15% tip I gave my helpful waitress this morning.  130% is freakin' insane."

Plus, he's just given you a bill for the real amounts of services rendered - so it's too late to pad it now if you refuse to pay a tip!

As for trusting the medical staff - well, finding a good doctor takes time.  You may have to fire a few.  Find one you can communicate with, even if that particular doc isn't the one your GP sent you to.  Trust your own instincts!  And yes, learn, learn, learn and then learn some more.  Every patient needs an advocate, and if you are capable, become your own.  Check out the results available online for each clinic.  Google your doctor's names.  You have a right to refuse treatment from any staff member at the clinic.  Face it, there are idiots in every profession.

But, do what you can and then let it go.  Don't drive yourself crazy.  Is every medical professional out there capable of making a mistake - yup.  They are human.  If you can find a center where they are all doing the best they can, then at some point, you just have to trust.   Really, we trust other people with our lives every day.  (When was the last time you got in a car and drove past a couple hundred strangers?)

[MooseMom]

Jbeany, thanks for that.  I understand exactly what you are saying (about both the attorney and dialysis) and have reached the same conclusions myself after having spent a sleepless night plotting my course of action.  My husband is going to contact the relevant state Bar Association; I think my attorney has forgotten that my husband is a lawyer, too.  But really, isn't this guy's behavior unbelievable?  I am in awe.

Re dialysis, now that I am over this initial shock, I am on a more even keel and will work hard to form good relationships with my health care team when the time comes.  And now I'll let it go.  (I never thought I'd ever be able to say, "And now I'll let it go."  See, I do have some modicum of sanity left!)

Thank you.

[jbeany]

I wasn't sure if your hubby was still practicing - if he was retired, he may no longer have access to Westlaw - it's awfully expensive!  I figured the ethics rules would be helpful for a fast reference.  You have to wonder what the guy was thinking - that you were sick and just going to go along with it because you didn't have the energy?
Honestly, the nerve!

[monrein]

My husband is a lawyer also, although retired, and we talked about the situation you presented MM.  We live in Canada so things might be a bit different but the bottom line is that we agreed that contacting the relevant state's professional association and outlining the situation to them is what needs to happen.

As for the trust issues with medical professionals, it is difficult but I know that you will be an informed and active partner in your own care and as such I hope that you will eventually feel an acceptable level of trust in your "helpers".  I ask millions of questions, mostly to understand things myself but also to keep people on their toes and to "assess" just how much they understand the processes at hand.  I apologize at the very outset for having the bizarre personality of needing to know everything that's being done to me but I've found that secure medical people are more than happy to explain as they go and they generally welcome an informed "customer".  The hardest part is when you find someone that you decide makes you nervous and you then have to ask for another person to assist.  I then again apologize for being a nervous Nellie but hold my ground and that usually works.  The last resort is to throw a tantrum but that really is a very last position.  As you know, I also think that taking the maximum responsibility for as much as possible including self-needling, helps to ensure some peace of mind but of course for some people that would ensure nothing but panic.
 

[rsudock]

Moosemama holding out my arms and hugging you!! 

Great advice JBeany!!

xo,
R

[lmunchkin]

Bottom line, MM, I believe he is just greedy and taking advantage!  PERIOD!

In regards to Dialysis, you know enough about this disease that you will definately be doing it at home. You will go In-Center for awhile, but I believe that you will not like the In-center experience!  You are too independent and very much Hands On!

Yes, Dialysis is not fun, but is very doeable and will become your life line.  Seriously, it's not so bad! But then again, I am the one dialysising, but hubby is the one that receives it!  He seems to be okay with it or so it seems!

lmunchkin       

[MooseMom]

Just a quick update, followed by a general dialysis question (if this isn't dialysis-y enough, please feel free to move this whole thread somewhere else more appropriate!)...

My husband took a copy of the attorney's letter to show several of of lawerly colleagues, and they all are desperate for a copy of it so that they can share it with their own colleagues; everyone is quite astounded, and this letter is the talk of the local legal community.

My husband had a chat with the Bar Association of the relevant state, and the attorney he spoke to used the word "bizarre" no less than 2 times.  There are parts of the letter that I have not spoken about here on IHD that are obvious ethics violations.  The guy at the Bar Association asked if I wanted to file a complaint, which I just may do if my attorney doesn't close my mother's estate immediately (he wants to keep it open for another 8 years!!).

So, I know what to do and how I will do it; thanks again, jbeany, for the lesson in Ethics in Law...it put me on the right track.

This attorney has handed me the fate of his career on a silver platter.  His bogus and unethical requests are right there in writing, and I could have his license suspended in no time.  I don't understand why he took such an outrageous risk, and the only explanation I can think of is that he must think I am so sick, befuddled and distracted by my kidney disease that it won't occur to me to question him, much less call the authorities in on his butt.

So my question to you all is this...have any of you ever felt, or have in fact been, taken advantage of because of your chronic illness?  It never occurred to me that someone might take such horrible advantage of my health situation, and I am not prone to playing the victim in any scenario, but my gut instinct is that this guy believes that my illness has turned me into some sort of vulnerable blob.  Have any of you faced a predator who has you in his cross-hairs because of your kidney disease?

[monrein]

What a greedy (and stupid) nimnod is that attorney.

In answer to the second part of your post, no I've never felt taken advantage of because of esrd and hope to always be able to say that.  Truth is though that I trust people overall but am always cautious and on guard for signs that this might be misplaced.  So trust but check is how I proceed.  In the same way I try to expect the best outcome always but prepare for the worst.
 

[MooseMom]

I certainly understand the need to always be vigilant so as not to be harmed by someone else's mistake.  I know that dialysis is complicated on so many levels, and it is easy for people to make mistakes.  Maybe they're not paying attention or misread something or don't fully understand your particular situation, and it is important for us to be educated and aware so that we can protect ourselves.  We trust that people are trying to do their best for us but can, and do, occasionally make errors.  But that's completely different from someone actively trying to harm you or steal from you.  I don't trust people to always be perfect, but up to now, I've also not expected to be purposely harmed.  This thing with the attorney is not really all that terribly important because he can't harm me, but someone involved in my health care CAN.  There are many dialysis patients out there who are much more vulnerable than me, and there are people on IHD who are more vulnerable than me right now, too, and I have to wonder how many of our members have been preyed upon.  I'm glad, monrein, that you are not one of them.

I don't know how to prepare to be actively and purposely harmed.

[silverhead]

While Sharon and I never felt we were treated "bad" by the legal community, we were reminded quite often that there were plenty of people in our world that thought very much like your Attorney.
We so often came upon people when we were out in public, when Sharon needed to use the wheelchair,  because she just didn't have the energy to walk any distance, but was otherwise in full use of her faculties (did not look sick in any way), it drove her absolutely nuts when people assumed that if she was in a wheelchair she MUST be hard of hearing, so raised there voices when addressing her.  Or if they had a question for her they addressed me, not her ,with it. The times she was run into by a shopping cart were to too many to count because they just did not see her.....
I could go on and on, but you get the drift......
Tom

[lmunchkin]

The thing is, MM, and correct me if Iam wrong, this guy has been the family attorney for years?  Him being the family's attorney and the family trusted him all this time.  Shoot, I'd go back and see if there wasn't any "GOOD RESULT FEES" in times when family called on him for legal matters. What a Jerk!

No to being taken advantage of because of hubby's ESRD, but I do believe if I were not here (only because of his nature) someone would!  I really do believe that, especially in this day and time!

I say GO GET EM.  Who knows how many unsuspecting clients he has done this to. You can make sure that you are his last!

lmunchkin   

[MooseMom]

lmunchkin, I have in fact wondered if he requested any "good results fee" from either one of my parents, but they have both now passed away, so I have no way of knowing.  It is entirely possible that he made a grab after my dad died; who better to prey upon than a grieving widow (I guess maybe a renal patient!).

Returning to a more dialysis based conversation, this experience makes me wonder if I should rethink my strategy re support.  All this time, I have kind of kept my husband out of all this.  He hasn't been to any of my neph appointments for the past 7 years, although he did accompany me to my pre-transplant evaluation appts, mainly because I don't know my way around Chicago.  I just don't want to burden anyone, and I also don't want to have to rely on anyone.  But now I am wondering if it might be smarter to start educating my husband about ESRD/CKD/dialysis so he can work to protect me if I get really sick.  So my next question to you all is...how involved is your spouse in your illness/treatment (especially if you are still pre-dialysis)?

[jbeany]

Mine did home hemo with me - so pretty involved with the machinery and supplies, etc, then.  But in terms of figuring out labs and diet restrictions, I left him out of it.  Come to think of it - do you want him knowing exactly what you should and shouldn't eat?  Does he nag?     If he ever has to shop and cook for you though, at least a few basics would be good, like no canned soup, low salt, no potatoes....

Make sure he knows the biggies - like no bp or blood draws on the fistula arm.  Otherwise, maybe you chould just ask him how much he's willing to be involved?  Have you done a living will?  Had that big discussion about what you do and don't want?

[lmunchkin]

Well certainly after what just happened, it may be wise to do just that!  In my situation, it is different!  But if he is willing, why not get him involved.  Absolutely!!  We just never know what tomorrow will bring! Better to be safe than sorry! As your husband, it really is his dutie to protect you, MM.  Now that being said, I know there are times that we "Ladies" tend to want to do things ourselves, but in reality, yea, we do need our Men to stand up for us every now and then!  Agree?

lmunchkin   

[MooseMom]

Oh, I've whined so much about potassium and phosphorus and other related issues that he probably knows more than I realize.  He's lived with me long enough to know that a big steak accompanied by cheesy potatoes with chocolate covered bananas for dessert is not a good idea...

Haven't had the big discussion yet because I don't know what I want or don't want.  But I do need to redo my will; I'll let my husband help me find a good probate/estate attorney, though!  THAT's something he can get involved with!   

[lmunchkin]

Well, that "Discussion" has not reared its ugly head here either!  Im certainly not going to bring it up! But yea, I think he probably knows more and pays attention more than you think!   Eeeeew that is scary! lol

lmunchkin