for AN related discussion only! Medical Ethics/What should doctors say

[ppearl214]

http://anausa.org/forum/index.php?topic=3121.msg35214;boardseen#new

As not to hijack another thread, this one is now started to discuss Medical Ethics and What should/shouldn't dr's say as it pertains SOLELY to AN's and treatment/treament facilities of AN's.

I urge you to keep focus and no personal digs.

As any discussion of ethics can be very sensitive, I URGE you all to keep all personal digs out of this thread.  If this thread goes off-topic or goes against site posting rules (http://anausa.org/forum/index.php?topic=4.0), it will be deleted.

thanks.
Phyl

gawd, I hope I don't shoot myself in the foot for this one....

[Evan]

Since I believe I opened my big mouth in another topic, I will simply state for all of those who read this that I think we should use our doctors or those with whom we consult for as much information that we can.  This includes, in my opinion their opinions or thoughts of other doctors and facilities and the reason why they have those thoughts.  In many cases, it may simply be that they know certain doctors (like we know certain people).  In other cases, perhaps they have some personal knowledge of the facility or doctor which is important for us to know.  If we trust the docs that we are consulting with, we should also trust them enough to at least listen to what they have to say about other docs.  From their we can accept or reject their opinions and move on.

Evan

[ppearl214]

In follow up to my big mouth commentary as well... for a dr to say "don't bother with so and so" (ie: to not send your MRI's there, etc), to me, is self serving of the dr.  It is my understanding that all physicians that treat AN's should be able to provide unbiased dialog in noting "if you want an opinion from so and so, it's a good idea", thus, making me more knowledgeable in what is available to me. 

For a dr to say "don't bother" does not (to me) demonstrate that he truly has my best interest in mind.  Regardless if they agree or disagree with another practioner or AN treatment option (unless a crime is involved, such as phony creditials, etc), it is the patient's ultimate decision on who they want to approach for an opinion and not for a physicain to say "don't bother with so and so".

*sits back with bag of popcorn to watch thread fly....*

Phyl

[Jim Scott]

I feel that a doctor dealing with an AN patient should, first, be knowledgeable enough to discuss all possible treatments and their pros and cons, with honesty, not bias.  Unfortunately, that kind of unbiased honesty is hard to find as a medical education does not confer sainthood on people.  Any doctor denigrating another would turn me off as I find that kind of back-stabbing unethical and unnecessary.  I believe that a doctor doing that is simply demonstrating his own immaturity, a lack of self-confidence and a negative attitude that I don't want in someone who is cutting into my skull.  But that's just me.

Second: I would like to see doctors dealing with AN patients fully explain the ramifications of surgery and/or radiation, without bias and without scare stories or pie-in-the-sky recovery scenarios.   

I was fortunate enough to have a neurosurgeon who was both compassionate and knowledgeable.  When I inquired about the House Ear Clinic, he immediately stated that they had a great reputation and seemed to be impressed with the facility.  I also inquired about the relatively new endoscopic procedure for removing acoustic neuroma tumors.  He seemed interested but stated that he had no knowledge of this procedure - had not even heard of it - and was certainly not qualified to perform it, inferring that if I wanted to go this route, I would have to find another surgeon.  However, he didn't appear to be annoyed or flustered by my asking about this procedure.  If anything, he was curious about it.  Because I needed almost immediate surgery due to my tumor's size and placement, I went ahead with my planned 'retro approach' microsurgery followed by FSR, which went very well.  My surgeon warned me that recovery would take months, but it really took weeks.  He was elated with my rapid progress and said that he was being conservative when he talked about a months-long recovery and didn't want to set unrealistic expectations.  I appreciated that attitude.  Basically, both my neurosurgeon and radiologist gave me plenty of time and responded openly to all my questions, as they should have.  I was very satisfied with their answers and their skills.  I only wish all AN patients had the same positive experience.

Jim

[Mary 117]

Doctors should be willing to discuss all treatment options including treatment by other doctors and clinics. At my first visit to the Neurologist after the revealing MRI, he has very candid and stated right up front that because I was a musician and saving my hearing was very important, he wouldn't want to perform this type surgery. He was willing and had performed AN surgery many times but had no issues with finding another doctor to provide appropriate care for my specific needs. Unfortunately, I have heard of another woman, in my city, who's doctor wanted to "practice". He failed to clearly inform her of the options and risks,and told her that the care she would receive in Billings, Montana would be the same as anywhere else. Well, it's stating the obvious that she has had a terrible ordeal with surgery and recovery.

I believe that doctors should be willing to discuss all options without feeling threatened as to their own competance. I, of course, think that House is wonderful but realize that there are many, many outstanding medical clinics in this country.

I am very thankful for the many wonderful, kind and caring physcians that we have in this country.
Mary
2cm Middle Fossa Dr Brackman  05/24/05

[ppearl214]

As many here that have been following my AN journey know... I consulted with HEI.... sent my films and all.  I met with my reputable neurosurgeon (who does cut for a living) as well.  She did her internship in GK.  I told her about my research into CK... and we even discussed FSR offered at her facility (a teaching, acute care facility).  She was open to what I had to share about CK and (sorry for the pun) we picked each other's brains about my discussions with HEI, her thoughts on GK, my info on CK and FSR at her hospital.  She is the one that actually said to me "instead of cutting, based on size and location, go have radiosurgery done".  I had CK done and she remains on my AN case and BI copies her on all follow ups and films.

That, to me, is how medical ethics in this AN journey is done.  Regardless of how many physicians are consulted and remain on the case, even if they are associated with other facilities, they should work in unison and not bad mouth or belittle others that also treat AN's.  I guess only in a perfect world, eh?

Phyl

[jerseygirl]

I have a recurrence, so a couple of doctors I talked to spoke very negatively of their colleagues that I might be visiting for my problem by saying " By the way, so and so had a few recurrences I operated on. He was leaving tumor pieces on/in ____" You fill the blank. I absolutely hate that! It makes me doubt this person's surgical skills because if he resorts to such low tactics to get patients then he must be not very good! Every surgeon has good outcomes and bad ones. Unfortunately, the patient does not know upfront which side he/she will end up on.

                Eve

[ppearl214]

Eve, good post   By using those scare tactics, it makes me immediately think of surgeons that use the scare tactics of "if you do radio-surgery, your chance of getting cancer is high"... as we know, AN radio-surgery treatment options have a very/extremely low risk of cancer (if I get hit by lightening first, then I'll worry if my CK treatment will give me cancer) and to me, unless a treating physician is well knowledgable of the radio-treatments, to me, it is unethical for them to note this in order to maintain the patient.

Working on my coffee... I'll think better shortly

Phyl

[Evan]

But at the same time, if that particular surgeon has specific knowledge of why, perhaps the previous surgeon was not as adept at removing the entire tumor, does not he, as a physician need to share that information with you as the patient.  Sometimes it may be the way that the doctor mentions other doctors.  But I still firmly believe that I would want my doctor to be completely honest with me if he knows something about other doctors with who i may be consulting.  We may not want to hear it, especially if we may have made some of our own preliminary opinions, but its better to h ear it then not, and suffer the consequences.  I agree its a fine line, but I would much rather knowing as much about the "other doctor" than not, especially if the doctor who is talking about him/her knows something that I don't.

Evan

[jtd71465]

Good luck trying to get information out of these guys regarding their peers, not to say it's a bad thing...it happens everywhere just look at lawyers.

Joe-

[Evan]

Joe: 

I think you would be surprised what doctors, when speaking to you personally will say about other doctors.  I am an attorney myself, and I have no problem "if I know something about another attorney" to let a potential client or a former client or anyone else about that situation.  I do think it is my obligation to do that.  Think about it in another way.  Lets say a doctor knows something about another doctor (about statistics, method of operating, etc etc) and lets say that he says nothing to you.  I would want that doc to tell me what he knows.  Remember, I am not saying that docs should bad mouth other docs just because he doesn't like him, or know him, etc. What I am saying that if he/she does know something, I think he should tell us and let us use the information the way we want to use it.

[ppearl214]

*sits back in lounge chair with popcorn, watching carefully.....*

[matti]

Maybe it's because I've been dealing with the medical system for so long that I have begun to question the doctors that say things about other doctors and facilities in a negative light. In a few instances and my own investigative work it turned out to be a personal issue between some of these doctors that stemmed from sometime ago (in one case, a personality clash in med school). So it was obvious these doctors did not have my best interest at heart.  Just like with any other profession, people bad mouth one another and we the unfortunate victims are caught in the middle. When I do hear a doctor tell me he/she would not recommend referring me to someone, I don't leave his/her office until I get a full answer siting reasons and statistics. I feel if you are going to make comments like that, you better have something to back it up with.

Evan - Not sure what your doctors feelings are, but Stanford is a wonderful facility and has phenominal doctors/surgeons. People come from all over the world to have AN surgery and cyberknife treatments. There are several forum members that are "post-op grads" of Stanford in both areas of treatment and have very successful outcomes. I am almost 9 years post op and doing great!!!! We have some newbies here that are scheduled for surgery there this month.

Cheryl

[Shrnwldr]

I guess I am one of those that have had nothing but good experiences.  My otologist, Dr. Robinson when I first spoke to him told he all the options available.  I felt gave me unbiased pros and cons to each procedure.  He even encouraged me to seek other opinions and I have no doubt would have given me names of any other "experts" in whatever field I wanted to investigate.  He has always been there for me even when I have called his office with some pretty outlandish questions.  He answer everything to the best of his ability and if he doesnt' know the answer he tells me.  I really appreciate his candor and honesty.

When I met with Dr. Hitselberger, my neurosurgeon, on Monday he was the exact same.  He answered every question and when he didn't know he told me he didn't know.  I asked him jokingly how good Dr. Robinson was and he said very very very good.  He himself has performed the translab procedure over 6,000 times in his career. 

I feel that both doctors have been candid upfront and honest with me.  I am lucky in that while I am not going to HEI they are very close and the hospital I will be at is linked to them.  As a matter of fact Dr. Freidman has an office in Orange, CA and knows my niece who works at the hospital  as c lerk in the surgical area.

I even have to say my ENT was upfront with me and gave me the name of the tumor immediately..... I went online and started investigating BEFORE I even met with Dr. Robinson.  Nevertheless I just feel really really really comfortable with these doctors.

[jtd71465]

Evan, I know your a lawyer(if you want to know how just ask), so that part of the post was intended just for you just as a joke.  But in consulting with four Dr.'s none, and I repeat none wanted to say anything (good or bad) about the other.  The most they said is they respect the others work.  Or they praised the others...

Joe-