ANA Discussion Forum
General Category => AN Issues => Topic started by: ppearl214 on March 20, 2007, 02:41:48 pm
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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....
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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
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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
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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
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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
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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
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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
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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
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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
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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-
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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.
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*sits back in lounge chair with popcorn, watching carefully.....* 8)
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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
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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.
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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-
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I am not quite sure why some people do not understand what I am saying. Let me start by saying what I am not saying.
I am not saying that we should listen to our docs bad mouth others without any evidence.
I am not saying we should simply accept what our docs say without further inquiry or investigation.
What I am saying is that there MAY be a reason why the doctor is not recommending someone that we may have heard about and if there is a good reason for it, then thats important.
Also, my docs never said "not to go somewhere". They were attempting to prevent overload. They felt that I would have been in as good of hands getting radiation at U of Pitt under Lundsford as I would at Stanford or Hopkins or anywhere else. They never bad mouth Adler or Chang or Medberry. They simply said...."You can go where you want, but I would have no problem recommending you strongly to Lundsford at Pitt, and he is as good as they are".
I do not think there is anything wrong with what my doc said, and I would expect him to make such comments if he has my best health in mind, which I believed that he did.
I hope this clarifies everything.
Evan
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So we should use the ANA forum members as the resource to discuss doctors and not use doctors as the resource to discuss doctors.
Or are you saying to use both as resources and share all the information, good or bad?
I'm only in third grade and advanced concepts are difficult.
Joe-
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I sense this is getting a bit contra.... errrmmm... difficult..
The goldlen rule here surely is never to take a single viewpoint
- if you hear the same neg from 2-3 (unrelated) sources
then maybe its true
- but there are vested interests out there
and sadley money talks...
Best regards
Tony
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Evan - I totally understand what you are saying and my post reflected my own experiences. I would just like to say that I did not find it helpful that you included in a recent post "my doctor said don't bother sending your films to Hopkins or Stanford". While this is not a personal view of yours, it is of your physcians and now leaves some inquiring minds here as to why. There are alot of newbies contemplating treatment options/facilities and I have already heard from one who is having surgery at Stanford and is very worried about the statement you posted.
Cheryl
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I've been following much of the other thread and now this one......
Truly, as a person who has dealt with words in writing novels and sitting and discussing each and every noun and verb with an editor for all the various connotations and denotations etc, I'd like to say right now that Evan's innocent comment in the quote "don't bother" is precisely that... innocent....
and it shows her docs simply expressing their confidence in where she was referred, along with a care about not overloading her more.....it's all innocent care.... and a reminder that good docs and good treatment do take place around this wonderful n american continent at least to me....
I can't for the life of me see anything more in that....
Also, I think it's good (prudent) that people stay on target with the purpose of the thread Phyl began.
Commetns about other docs by docs happen evry single day and that has nothing to do with Evan's quote ...... please do keep that one in context as you add other thoughts in a general sort of way..
Cheers,
W.
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Windsong - I agree with you, I know it was an innocent comment, but I am not the terrifed and very nervous newbie having surgery next week at a hospital that was mentioned. I understand where they are coming from too,
and I was just trying to help.
Cheryl
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I agree with you also Windsong AND I don't feel that any newbie would become any more or any less terrified of that statement if taken in its full content...................................
I think most doctors are ethical and are open to patients going elsewhere for opinions and/or treatment. I also think that they appreciate that patients are taking more responsibility for their care than before. But then I have a very Pollyanna view. :)
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(((((((((((((HUGS)))))))))))))))))))))))))))
to all newbies and ALL of the rest of us too!
W.
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*perks up a the recent posts on page 2.........* :-\
to keep this on track based on my original intention in starting this thread (and allowing it.....)
the question being...
Is it ethical for another dr to either discredit another AN treating physician or AN treatment facility and if a dr does elaborate on a negative comment, how should we, as patients take it? Or, do we take it at all?
I continue to watch this VERY carefully. NO personal digs will be allowed... understood?
As there have been many recent, new members to this website, let's keep sensitivity in our posts to those that are newly diagnosed that may be reading this thread, ok?
Phyl
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Thank you folks for the last few posts. Words are wonderful, but they can sometimes be taken out of context. We should all obtain as much information from our doctors as we can. We would all love to hear that the doctors with whom we have already consulted are great, wonderful, etc. We do not want to hear the opposite, especially since we are entrusting our lives to them. However, we should keep an open ear when we do hear something negative, so that we can explore it further and see whether there is any truth to it.
In terms of my doc saying not to bother sending my MRIs to Stanford or Hopkins, I will try to repeat what I have been trying to say. My doc did not say that out of negativity. Quite frankly he believes those places are good. He also felt strongly, based upon personal experience that U of Pitt was just as good as those two other facilities. So his comment was not intended to put the other places down, but instead simply to say that "there is no need". In other words, if he knows a place, and there are two three or 15 other places that are as good (but possibly no better) then he was simply trying to take some of the leg work out of it for me.
So, for those of you who may be going to Stanford or Hopkins, I am absolutely certain you will be in the best of care, the best of hands.
Evan
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I appreciate the fact if a dr wants to help off-load some of the legwork, but in the long run, it's my body and I am the one that will have to live with the end result day after day, not them. For me, IMO, if I want to send my MRI's somewhere, research a protocol, etc. I will. I had a highly reputable AN treating physcian (who will remain unnamed here) give me the cold shoulder, stating in a rather rude way, "well, good luck..." when I told them my final decision.
For me... I feel that I have the intelligence to listen to all and make my summary from all input and base my treatment decision on that (as I believe many here will agree as that is what we tell everyone here... take all the info and make the best decision for you).....if a treatment dr is going to talk negative about another treatment physician/protocol/hospital, for me... I'd rather find out via patient references (I always ask for patient references prior to deciding on a treatment specialist or procedure) if the negative is true. Physicians can say what they want, but it's us that live with the long term end result and if there is going to be negative comments about a dr/treatment/hospital to be made, for me, I'd much rather listen to those that deal with it 24/7/365 than someone that collects my insurance money.
Thus... when I was diagnosed, I tried to reach out to others in my shoes.... you all here :)
oy.
Phyl
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I find this a really interesting topic. My experience is that I was misled (IMHO) by an ENT who strongly insisted that I absolutely had to have surgery for a small AN, and that I would be at great risk for "cognitive problems" if I had radiosurgery. From my reading on this board, it seems that my experience is similar to that of a lot of others. I've been wondering if this sort of bad advice is the result of doctors being unwilling to give up a lucrative operation (as another thread said, worth about $150k), or if the doctors giving the bad advice just don't keep up on the medical literature at all. In my case, my ENT is the senior, most heavily certified and published member of the main ENT group in a city of 200,000 people, so if he knows absolutely nothing about ANs, this means that no one in this city knows anything useful about them. So even if my ENT wasn't acting out of a financial motive, I guess the ethical question becomes--are ENTs behaving ethically when they give advice on treatment for ANs without keeping current on the research in this area? And is it kind of shocking that a senior ENT in a mid-size city is so ignorant about ANs?
This board has been hugely important to me in pointing me towards useful, reliable information, and I am enormously grateful to all of you who keep this thing going and who provide the rest of us with objective, helpful info. Thank you so much.
Mac
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Mac:
I have read your post with interest. Although I am also fairly new here, the research I have done indicates that there are only about 2500 to 3000 AN's diagnosed per year in this country. That is an extremely small number and I think your experience also shows that while someone may be a highly experienced ENT, there are a relatively small number that have any extensive experience in treating AN's. That is why, as many others have said, you have to ask lots of questions, beginning with how many An's have you diagnosed, how many have you peformed operations on, success rate, how many in the past year, etc etc etc. If in your city, you do not seem to be able to obtain someone with experience, then you may have to travel someplace else. But as you also have seen there are many qualified docs on the East Coast, West Coast, South, Midwest, Florida, etc, so if you continue to explore on here and listen to others suggestions, comments experiences, you should be able to get to someone that has a subspeciality in AN's.
On another note (unrelated to this post), I am not quite sure why I have stirred up such a controversy in terms of doctors suggesting, advising us, etc. No matter how much I know as a lay person, no matter how much I know as a result of research on AN's, it is MY FEELING that I will never know as much as my doctor. Therefore I am going to rely on him as a guide, and listen to all he has to say, whether it be positive or negative about anything or anyone.
I also read Phyl's last post about doctors being beholden (excuse my paraphrasing Phyl) to the Insurance Money. All professionals have to earn a living. However in my experience, professionals such as doctors or lawyers, or engineers, or accountants, are well down the line of income, as compared with businesspeople, investment bankers etc. Doctors also work extremely hard, and I find it hard to believe that most of them (especially those surgeons dealing with AN's or other brain tumors) have, as their main focus, an operative procedure, rather than a patient. I think most of the doctors we have all been discussing here, are caring and have our best interests at heart. As my own surgeon said last week...."I am doing my job if I am able to tell a patient that he does not need surgery". While I am sure there are ones out there that do not feel this way, I do believe that in our small community there is that same general feeling.
One more thing: While it is easy to be skeptical, if we become too skeptical in our analyses of our doctors, treatments, etc, we will simply continue to go round and round and round, and eventually be stuck in the same cycle.
Evan
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Is it ethical for another dr to either discredit another AN treating physician or AN treatment facility and if a dr does elaborate on a negative comment, how should we, as patients take it? Or, do we take it at all?
Phyl
Phyl, I would like to add a 'second opinion' - my own - that directly address this question, as opposed to my more general response in an earlier post.
Yes, I believe it's ethical if the doctor can substantiate his (or her) negative opinion with facts and/or statistics, and demonstrate that its not based on some vague, unsubstantiated animus toward another doctor and/or a facility. If he (or she) can do so, I would consider that as being in my best interests. If not, that doctor would quickly lose credibility with me.
As to 'how we take it', that is an individual decision that I don't believe can be answered as an absolute. Many factors are involved, including our relationship with this particular physician. Is he (or she) new to us or one with whom we have a long-standing relationship? Again, a lot would depend on his (or her) reasons for the negative opinion toward another doctor and/or facility.
Finally, with the research power of the internet, it isn't all that difficult to glean information on a doctor and/or a hospital. My radiologist told me, in passing, that he found most AN patients to be very well informed, which, he commented, "makes my job easier" (as he explained the mechanics - and positive statistics - of the FSR treatments he was in the process of mapping) . Obviously, he wasn't afraid of questions or challenges to his opinions. By the way, neither my radiologist or my neurosurgeon ever said a negative word about another doctor or a facility.
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Jim:
You have said it best, and probably the way I had intended my previous posts. The key to all of these issues is "us". What we do with the information, the questions we ask, the information that we have been able to obtain.
Today, I went to Dr. Sisti (also a well known neurosurgeon at Columbia who does both radiation (GK) and regular neurosurgery. I did not tell him what my other docs had said about my diagnosis or lack of it.
First, he said that the doctors I had consulted with are top notch, as are many others in the city and in some major cities. He did make a point by saying that the docs who do alot of AN's are a "small" group as there are so few diagnosed each year, but you can't go wrong with any of the names that have been discussed on here.
He agreed with everything that my previous docs had said, which is....."I do not think it is an AN", I don't know what it is, it may be nothing, it may be something, and lets do another MRI in about 6 to 8 weeks". Well, that was reassuring in one way, and also left me hanging in another, but I should not complain based upon what people have gone through, are going through or will be going through.
I wanted to relate what else he said in terms of both radiation and regular surgery since he does both. He clearly feels that with smaller tumors, and with little symptoms, radiation is the way to go. It is his opinion that since it is relatively new, as compared to regular surgery, it is sometimes difficult for neurosurgeons, trained in cutting, to suggest anything different. He does say that things are turning around, because the studies do confirm that with smaller tumors that have little symptoms, the results are comparable to cutting, and of course, do not carry the same risks as surgery.
He did tell me something I did not know about radiation. He said that even with GK, there is a 1 in 4 chance (based upon his experiences) that ones hearing will be affected, even if there was minimal hearing loss to begin with. He explained it this way....He said that when we are talking about hearing loss, it is really not an "auditory nerve" per se. He said that which carries hearing to the brain, although technically a nerve, is an extension of the brain, and therefore that is why it is difficult to preserve hearing when doing surgery. Nerves, as he explained are resilient, and thats why when there is damage to facial nerves, they regenerate and/or are able to be transplanted. Not so with the "nerves" that carry the sound to the brain. Hence the difficulties.
So, although this is a bit off topic, I wanted to include it with the rest of my post.
Thanks.
Evan