Selecting a Patient Advocate

[MDemisay]

  ???My wife said I should select a Patient Advocate to help select treatment options, and do research?

My question is what experience has anyone had regarding this?

Mike

[Jim Scott]

???My wife said I should select a Patient Advocate to help select treatment options, and do research?

My question is what experience has anyone had regarding this?

Hi, Mike ~

Although patient advocacy is a relatively new field, it is a growing one.  You can find Patient Advocates (that work for a for a fee) through your insurer, a medical group (RNs are often used as Patient Advocates), or even the internet.

For most of us, our spouse, a family member or close friend acted as our patient advocate.  They are usually willing and even anxious to help.  A 'non-professional' has to have a flexible schedule and not mind spending time in doctor's waiting rooms, labs and hospitals, as well as keeping you calm and positive as you proceed through the necessary appointments and testing that lead up to your treatment (surgery or radiation).  They take notes and make phone calls, keep track of your medications and make sure that all your questions are answered (by your doctor) and that you're not neglected while in the hospital or radiation facility.  However, for selecting treatment options and doing research, I would conduct my own (internet) research and trust my instincts when it came time to choosing a treatment approach because you'll have to live with the outcome.
   
Although I did my own research, my wife acted as my advocate (including staying in the hospital near my bedside for 48 hours during and after my AN surgery).  Her help during that time (2006) was invaluable and I'm very grateful to her for being there for me.  However, if a friend or family member cannot perform these functions, a paid Patient Advocate may be able to help you.  It's your choice. 

Jim

[leapyrtwins]

Personally, my take on this is you are your own best advocate.

You don't want someone else to make your treatment decision for you.  It's your tumor and your decision.

You don't want to second-guess the decision - especially if someone else makes it for you.

Jan

[MDemisay]

Jan and others,

Of course, I would be making this decision on my own!

I am an adult (54) and I do realize that I would be making the best most informed decisions on my own (as the patient).

In 2004, after an exhaustive summer doing research. I postponed the decision about eliminating the entire tumor and had the Doctor convince me about preserving my smile, subtotally resecting it. Now, unfortunately, the tumor has regrown and I have to reconsider my options.

 I have a lot to consider here, if I make the wrong decision, it could affect the lives of my family for a long time to come. I would only be asking for someone to collect voluminous information for me.

Because ,you see I have no one on whom I can depend, my wife thinks that this is a simple procedure, my parents are aged, my brother and sister live in far away states, my daughter is set to graduate college. My wife has reluctantly agreed to come with me but thinks I am wimping out.

True, I maybe, but since there is so much to risk (my very awareness) shouldn't I be fully informed?

Thanks for your concern though,

Mike

Ps.I will make clear that the final decision will be mine.

[Silver Sonnet]

Hi, Mike.  You're right, I think, that someone to help you find and "digest" information is helpful.  I'm lucky that my sister is the head charge nurse of a big (well, big for our area) cardiac and neurosurgical intensive care unit, and she served as my advocate, heavily assisted by my kids, all of whom are in or have been in the medical profession.  Even with Judi doing the research for me, I was overwhelmed by the sheer number of options available to me and the wildly varying professional opinions of those options.  One very popular doctor told me something that I knew from my own research was not true; I quickly concluded that numbers were more important to some doctors than were patients.  I was frozen:  I literally could not make a decision, and every doctor I talked to told me something different.

Luckily, while researching, my sister discovered the NF2 study at the National Institutes of Health.  I applied and later called with questions.  The co-head and main surgeon got on the phone and chatted with me for over an hour.  While I'd had extended discussion with other top surgeons (seems to be par for the course with NF2), I had an excellent feeling about NiH and Dr. Asthagiri.   I can't explain how thankful I am to have found them; there's no question but that they saved my life (and my smile and they did it all for free.

My point is that, without an advocate, I'd never have found this place, and I seriously doubt my outcome would have been so great anywhere else.  If you do choose to go with a paid advocate, be sure to get references and to actually check the references.  Anyone can take your money and make a show of protecting your interests.  With something as serious as NF2, you need to be sure you have someone who will really fight for you. 

Good luck!

[leapyrtwins]

Mike -

you are right, you should be fully informed.

But, IMO, you are overlooking one very important person you can count on - yourself.  In other words, the research is out there and as you say, you are a grownup, so go for it.  Sorry if you think this is too harsh - I don't mince a lot of words, but I'm not trying to offend you.  Truly.

I was 45 1/2 y/o when I was diagnosed, recently divorced with two children who were 10 years old.  Yes, I have parents (aged, like yours) and siblings, but I too had no one I could depend on.  Except myself.

I'm the one who educated myself - it was my tumor, my head, and I felt I was the best one to do the research.

Maybe you don't think you can do this because you mention "voluminous information".  I took an easier approach - by starting with a neurotologist who I trusted and believed in 100%.

After my surgery I found out about the ANA and realized that they publish some excellent material on ANs; it's a great place to start - and not too voluminous.

I'm not trying to simply the whole decision-making process or suggest you take it lightly, but you could research this to death (for lack of a better expression).  Maybe you should consider a simpler approach.

Best,

Jan

[MDemisay]

Jan,

Operating in good faith here as always! I promised to keep you appraised of my progress since I work full time. I have selected a Patient Advocate who is an RN. Hopefully she will guide me in the right direction on which methods I should choose and who has the top ratings as far as docs go.Don't worry about me as I shall check first with those of you who have invested so much of yourselves into my "Irv" saga! I go into this with both eyes wide open as well as my heart! Thank you for caring so much about me. I will keep everyone appraised of my choices and progress on "Long and Winding Road" that we all seem to be on!

Mike

[MDemisay]

Dear AN Family,

Please consider using a Patient Advocate! It eases your research and mind when you do and it helps settle and make your mind up. Of course, you HAVE to decide yourself but it helps immensely when you have someone doing the research along with you. I chose to go this route and of course used the adequate and plentiful advice from all of you before making my decision.

Some factors to consider:

1. Is the surgeon/hospital close by?

2. Does the selection follow up?

3. Will it be inconvenient if I should require further treatment?

4. Will the doctor I saw last time not want to see me again?

All these were considerations I had to take into account before I chose my original surgeon Dr. Sisti. The results were superb and goes to show me that I should have followed my gut all along!

You maybe wondering why I am commenting so much time later, actually, I didn't recall this post, until now, and I wanted to be helpful to the newbies or those of you who are just going through this for the 1st time!

Once you get the frightening news that you have a brain tumor all other things seem less important! At least they did for me. When I had the opportunity to slow down, things seemed to gravitate towards alright what are you going to do now?

This is a treatable condition! It is operable! Believe me, there are brain tumors that are inoperable, as I quickly found out by going on the wrong website!

There is hope however, if you have found this website, you are among friends here!

Ask our advice we are only too glad to help!

I used a Patient Advocate only because I work full time and I didn't want to take up more time than was really necessary.

In 2004 I left my job, took a 3 month hiatus, and looked by myself and procrastinated. I couldn't afford to do that again in 2012! I researched 14 docs!

I centered in on 3 physicians this time all top picks from 2004. Dr. Sisti, Dr. Kondziulka, and Dr. Golfinos.


Good luck,

Mike

[leapyrtwins]

I used a Patient Advocate only because I work full time and I didn't want to take up more time than was really necessary.

Wanted to note that at the time I was diagnosed I also worked - and still work - full time outside of the house.  That's in addition to my other full-time job of being a single parent 24/7 to two (now) teenagers - they were 11 at the time of my diagnosis.

I guess my point is, that patient advocates are great - but don't lose your self-reliance.  You have to be your own advocate - even if you work full-time (like lots of us do).

I also found that as I went through the process of advocating for myself that I became more confident in my decision and more determined not to let my AN take control of my life.  In the end I discovered that I was stronger than I realized and that I went from being very frightened by my diagnosis to being sure I could deal with it.  And I think that helped immensely in my post op recovery.  Sometimes you just have to "own" something.

Just saying . . .

Jan

[MDemisay]

Dear Jan,


What you are saying rings true for me as well ! It is precisely because I didn't want to exhaust myself again (as I had done in 2004) that I chose a Patient Advocate this time.

In 2004, I had opted to do the leg work (interview process on my own with my wife taking notes) all in all I interviewed 14 Docs in multiple locations..

In 2012, after a scary time and much conversation with my partner/wife, I chose the 3 previous top contenders and asked my P.A. (patient advocate) to do the research. I almost chose Dr. Kondzuilka but he was too far away!  He came up to NYU in October, my procedure was scheduled for June!


However, a number of other considerations came into play that influenced my choice, mostly the outpatient treatment center at NY Presbyterian and the fine care I had received in my two previous stays with them.

It is important to me to encourage calmness and thoughtfulness. Of course, I realize that one's choice is one's own to make and I wasn't encouraging having the decision made for one but instead choosing from the top in the field (from at least 3) and deciding with one's own sense of judgement!

If it can be made simpler (the research) why shouldn't it?

Mike

[leapyrtwins]

Mike -

totally understand your point; just wanted to offer the flip side.

It's like when life you gives you lemons.  You can either a) make the lemonade yourself, or b) have someone do it for you. 

Guess it's just the self-sufficient control freak in me that leads me to make my own lemonade 

Jan

[MDemisay]

Dear Jan,

Perhaps, I could retitle my post "When to select a Patient Advocate" would that help?

I don't want to belabor or water your point down.....I only want to help others come to a better understanding of their options!

In 2004, I spent a great deal of time and effort in choosing 14 docs who had a decent reputation including travel time to interview each one (except 2, Dr. House and Dr.Kondziulka)  who could consult with me about what to do regarding my large AN. I made a decision (and documented my interviews in a Big Red Binder) in 2004 to have my tumor debulked by Dr. Sisti. The operation was a huge success however the recovery period was not it took me 6 months of  intensive therapy and out patient visits to Kessler Rehabilitation.

Seven years later, Dr. Sisti informed me that I had had a regrowth..........I panicked.......Not wanting to put my family through this extensive research again I decided that I would choose from the 3 top doctors Dr. Kondzuilka Dr. Sisti and Dr. Golfinos based on the research that I had done 7 years ago. However, I wasn't entirely convinced.......hmm....what to do?

It was my wife who suggested that I hire a Patient Advocate. Once I contacted her and asked her to send me the information I felt I could make my decision. I still needed to reinterview the the other two doctors (Dr. Golfinos and Dr. Kondzuilka) though.

In the end, I made my decision, I had gone the distance I needed to for my own satisfaction. I only used the information that she was able to get, most of it was duplicative and repetitive.


I want to stress here that a Patient Advocate is not for everybody. The Patient  Advocate will not make the choice for you.....you still have to do that yourself!

Initially, the final choice rests in the patient's hands, I was only trying to seek the best possible outcome (as I urge all of you to do). For me, in addition to the ANA forum the Patient Advocate provided information only.

I want to tell you, Jan, that I counted on your opinion as well as many of the other AN friends I have made along the way, by discussing this issue openly I feel that we as a group can assist one another. I most appreciate that. I

Jan, I understand your point that Self Reliance is key,but  there was no one to tell me when the time was right to act on the first go round(2004) when I had had the surgery in the first place, I was alone as a patient I had meager outlets (family) available then (that I was aware of).

 In 2012 it was different,I had all of you to calm me down and center me......I will always be appreciative of that!

Your friend,

Mike

[MDemisay]

Correction to all,

I made a mistake there is no Dr. House (exept for the fictional one on tv)
What I meant was Dr. Friedman at the House Ear Institute in LA, sorry everybody!

Mike