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        New Message Board Archives >> Jul-Sep 2003 >> Ponder This...Love to hear you thoughts
        
(Message started by: hootchdom on Aug 19^th, 2003, 7:30pm)

Title: Ponder This...Love to hear you thoughts
Post by hootchdom on Aug 19^th, 2003, 7:30pm

Does a Doctor have an ethical, medical and or legal responsibility to inform you that they do not know how to treat CH’s?

Should they inform you that they have little or no experience or knowledge in the treatment of CH’s?

If they are treating you, what responsibility do they have to become knowledgeable of the disease?

Hope this generates some interesting discussion

Title: Re: Ponder This...Love to hear you thoughts
Post by Brian_Y on Aug 19^th, 2003, 7:34pm

I do not think so. They can treat you under tthe auspices of "pain mangement"?

discuss, proles...

Title: Re: Ponder This...Love to hear you thoughts
Post by cootie on Aug 19^th, 2003, 9:13pm

I fergot how to ponder.....it's been a while. Our doc suprised me how much he does know and is an internalist. I told him somea the new info I learned at the convention and here he already knew it. He seems to "want" to keep up on it all and be honest and help....I think that's the key !? Pam that's not quite sure she answer'd this rite ?

Title: Re: Ponder This...Love to hear you thoughts
Post by Hirvimaki on Aug 20^th, 2003, 8:41am

Most certainly a physician has an ethical responsibility to inform you if he has little or no knowledge of treating CH. There are specific principals of conduct that should govern every doctor's behavior:

The doctor should not harm the patient's health: the principle of "non-maleficence."
The doctor should do everything possible to benefit the patient's health: the principle of "benificence."
The doctor should respect the competent patient's freedom to make health care choices: the principle of "autonomy."
The doctor should treat all patients fairly: the principle of "justice."

Not informing you of his or her ignorance or lack of experience in treating CH violates several of those. It is true that many doctors believe that it is only the doctor's responsibility to make the medical choices for the patient, but top-most in any good doctor's mind should be the well-being and health of his or her patient. Therefore, a good doctor would inform you if he or she cannot give you the medical care you need as a CH sufferer.

I am fortunate in that I have a doctor who was not only aware of CH - he is the one that told me I was not suffering from migraines - but went out and did a load of research to learn more about CH so he could better provide me with care. He also has battled with my insurance company (something he certainly has no obligation to do) to get me the things I need (O2 for example) to treat my CH. Throughout it all, he let me know that seeking other opinions or seeking out a doctor with more specific knowledge of CH was my right.

Title: Re: Ponder This...Love to hear you thoughts
Post by Leesa on Aug 20^th, 2003, 4:27pm

IMHO I feel the docs should tell those who suffer that they know nothing about it and try and find someone who does. I feel its NOT my job to show them the ropes so to speak when it comes to CH and nor does Dave. If the docs want info fine give it but other wise forget it. We all know most of the docs dont really seem to care what CH is nor do they care about how to treat it. Those who are lucky nuff to find a doc that gives a damn are just that LUCKY! Too many docs told Dave he was suffering from other stuff, like drug abuse it was in his head yall know what I mean. If they are going to treat you then by all means they should know EXACTLEY what to do to help!
Leesa whos gettin off the soap box now ..........

Title: Re: Ponder This...Love to hear you thoughts
Post by hootchdom on Aug 22^nd, 2003, 10:09am

Just an update....

Finally got my GP to perscripe o2. After four days because she forgot to turn the order in The medical supply company should up at my house. Tech told me how to use the o2. Said it was set for 2ml per min and instructed me how to put on the nasal tube.

Of course at this point I knew this was useless. So the next morning I fax six pages of the correct treatment for CHs using o2 to my GP. (most of the pages from here and ouch). This is the fax I get back from her.

"Mark,
You can also make more of an effort to help yourself!

You can go through your provider handbook and call other neurologists in the city to be seen sooner!

Also, you can see pain management in the phone book.

Lastly, if you get nasty with me or my staff one more time, DO NOT come back!

Dr. P"

My thoughts.....Let take a baseball bat between your eyes and see if get nasty with someone.

Title: Re: Ponder This...Love to hear you thoughts
Post by don on Aug 22^nd, 2003, 10:19am

A quote from my neuro regarding ER treatment of CH.

"Someone has to teach those idiots to not treat CH as Migraine"

Ya gotta love this guy. Zero ego.

My take:

Quote:

The doctor should not harm the patient's health: the principle of "non-maleficence."

Treating cluster as Migraine harms the patients physical, mental and spiritual health.

Quote:

The doctor should do everything possible to benefit the patient's health: the principle of "benificence."

The doc shpould be aggressive with treatment and willing to take risks.

Quote:

The doctor should respect the competent patient's freedom to make health care choices: the principle of "autonomy."

The doc should be listening to the informed CH patient and not running his yap all the time, and consider the informed patients suggestions.

Title: Re: Ponder This...Love to hear you thoughts
Post by juvy on Aug 22^nd, 2003, 4:32pm

I guess it depends on the Drs ethics. If he really cares for his patients he'll admit his lack of knowledge and seek a consult with someone with knowledge. It took me over a year to get my Neuro to consult with the Medical University in Leiden for some help.

Title: Re: Ponder This...Love to hear you thoughts
Post by Big_Dan on Aug 22^nd, 2003, 5:36pm

... alot of doctors don't have ethics.

BMW payments on the other hand......

-Big Dan

Title: Re: Ponder This...Love to hear you thoughts
Post by Carl_D on Aug 22^nd, 2003, 5:41pm

It has been my experience that most Doc's will not tell you they don't know how to treat CH's, they will just prove they don't by thier course of actions.

Peace,
Carl D

Title: Re: Ponder This...Love to hear you thoughts
Post by Miss_Deleny on Aug 22^nd, 2003, 8:02pm

Hootchdom, the Doc REALLY sent you that message? Did you tell the doc to go get pumped?

~April~

Title: Re: Ponder This...Love to hear you thoughts
Post by Mark C on Aug 22^nd, 2003, 8:13pm

I am not sure how Doctors got to be so..."Godly". My Doctors provide me a service, just like my plumber or mechanic. If my pipes still leak, I find another plumber.

Mark, I believe I would just fire that bitch of a Doctor and let your fingers do the walking...and while you are at it foward the fax to your states medical review board....just for fun. Fucking quacks!

Onward through the fog! (Oat Willie)
Mark

Title: Re: Ponder This...Love to hear you thoughts
Post by jimbo on Aug 23^rd, 2003, 10:10am

I probably would have printed that email, rolled it up in a ball and went to the doc's office and shoved it into his/her eyesocket using a blunt stick to help push it in! Then say to the doc "Heres the phonebook, maybe you can find someone to help you manage your pain you egotistical arrogant ass-wipe"

What a bunch of bullshit! >:(

Jimbo

Title: Re: Ponder This...Love to hear you thoughts
Post by Prense on Aug 23^rd, 2003, 10:17am

I am an aircraft mechanic...I work on electronics systems to include flight controls, instrumentation and displays. Mechanics work on engines too...if I were to do so, I'd lose my job and probably go to jail. I personally believe that docs should follow the same guidelines. "pain management" is a joke concerning CH. At the first sign that the doc does not know what he/she is doing concerning CH, I am out of there. We do at least have that choice. Unfortunately, there are many other factors that play in to that choice...money, location to name a couple. Great topic though...I have been a bit upset about this same thing for a while now.

Chris

Title: Re: Ponder This...Love to hear you thoughts
Post by FrankF on Aug 23^rd, 2003, 2:56pm

I am lucky. After 14 years of CH (and having the same doctor for almost 20 years)... I go to see my doctor for CHs, he gets out his script pad, and asks what I need ;D Not that my insurance company will pay for it, but at least I get a prescription for the right stuff.

Title: Re: Ponder This...Love to hear you thoughts
Post by OneEyeBlind on Aug 23^rd, 2003, 8:45pm

Holy crap, that letter from your doc should definetly be sent to the medical board. No way, no how should a doc speak to you like that.

Nan who has a great doc and is thankfull !!!!!!!!!

Title: Re: Ponder This...Love to hear you thoughts
Post by cerebus on Aug 23^rd, 2003, 9:18pm

I still contend that the all time best question asked at a Dr's office is: "On a scale of one to ten one being mild pain and ten being intolerable where do you rate your pain?"

Funny how this question gets asked every single time and the reply gets totally ignored....Hell Yeah, your Dr. should be required to notify you of lack of experience would you want your surgeon being mal-informed on heart surgery when he/she is supposed to perform it on you in the morning?

Better yet your Dr. ,if competant, should WANT to know more about your condition if he/she is to continue treating you. Lets face it the age of the "family Dr." is coming to an end no matter what it says on his/her practice door.

As for the fax........Kill!

Ramon

Title: Re: Ponder This...Love to hear you thoughts
Post by Turts on Aug 23^rd, 2003, 9:58pm

I have had a "neuro" who has displayed vast knowledge about the physical pain/affects of CH, but informed me that

"Not to worry, CH does not have an effect on your health"

???? what the????

Doctors dont only need to be educated about the anotomical effects of Ch but also the physcological effects of depression and despair etc to be able to treat a patient effectively.

>:( :'(

Title: Re: Ponder This...Love to hear you thoughts
Post by Zonie on Aug 24^th, 2003, 10:40pm

All of the replys sound very typical. I have been referred to who knows how many doctors (including neurologists) who had no clue as to how to treat CH. I actually had 2 neuros tell me that they had no clue as to how to help me and referred me to a "headache specialist". She was much more knowledgable and helpful, but resigned her position with Barrow's Neurological Institute here in Phoenix and left me high and dry. I actually had one neuro tell me that he had "a" CH patient have a cluster in his office and he realized that cluster suffers require and are in need of more help than he could provide. He's the one who referred me to Barrow's.

I have also educated many, many docs by providing them with all kinds of literature about CH and then they just begin to ask me what I need and expect me to treat myself. Then they leave Phoenix and I have to train another. I am in the process of training another new one and am have a problem getting my O2. He asked me what I needed O2 for and he also asked me why I take prednisone. Those were 2 really big clues that I was dealing with another Dr. Dumb (when it comes to CH). He asked me if I had ever seen a neuro for this problem and this tells me how well he's (not)reviewed my chart in his hand.

I've just learned that if I get the care from a dr. that I require to continue to live and breath, I must take the lead and not be pushed aside by their ignorance or lack of compassion. It really does cause us to lose faith in our medical profession, but has anyone noticed that there are more employees in your doctors office taking care of the paperwork than taking care of patients. You can bet that they'll get their $$$$, but whether our health and well being improves isn't a top priority.

Boy, I feel so much better now (getting that off my chest). For what it's all worth, I've had some really good drs. and more really sorry ones in the 13 years of clusters. We just can't give up.....keep on plugging.