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

[Evan]

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

[jtd71465]

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-

[tony]

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

[matti]

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

[Windsong]

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.

[matti]

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

[Shrnwldr]

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.

[Windsong]

(((((((((((((HUGS)))))))))))))))))))))))))))


to all newbies and ALL of the rest of us too!

W.

[ppearl214]

*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

[Evan]

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

[ppearl214]

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

[macintosh]

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

[Evan]

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

[Jim Scott]

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. 

[Evan]

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