In search of the best -- why we wrote the story

Few people bat an eye when high-profile leaders such as Sen. Edward Kennedy travel far from home to seek medical care for a life-threatening condition. He has access, name recognition, resources -- of course he'd be able to identify, and get, the best possible treatment for his brain tumor.

The Health section could have done a story on the doctors involved or on Kennedy's condition. Either would have been relevant to some people and simply interesting to others. But what is most relevant to the most readers is how they too can get the best care possible. That's why we wrote this week's story, Patients go on a quest for the best medical care.

Not only can average Americans get such care for unusual or high-risk conditions, they routinely do so. First they have to gather information about their condition, compile treatment data, identify the  practitioners or institution that might be able to help, set up various consultations and then convince the insurers involved. None of this is easy.

That's not to say everyone should go off in search of experimental treatment and decide they want a specific therapy regardless of whether it's appropriate. Doctors play a crucial role. And, often, traditional care is most appropriate.

But at the end of the day, it's the patient's health, the patient's life, at stake. Tales of those who fought for what they thought was best -- and prevailed -- are legion.

So at those times when you're on your own, it's good to know you have the resources and the ability to take charge, to find out what's right for you and to push for it. We tell you how.

-- Tami Dennis

Photo: Josh Reynolds / Associated Press

Comments

[Winfield J. Abbe]

This is nothing but a propaganda article seeking to fool a gullible public. Every day thousands of victims are killed by the medical "profession", but the death certificate tells a lie that they died from "blood poisoning", when the blood poisoning was caused by the chemotherapy treatment. Does Ms. Brink think any medical doctor will admit they are negligent or that they would criticize the medical orthdoxy which has fraudulently approved dangerous and toxic drugs that can and often do kill a patient? By the way let's see how the SEnator is doing in 6 months or a year.
Ms. Brink read this article by Dr. Joseph Gold, M.D.: www.hydrazinesulfate.org.
Winfield J. Abbe, PH.D., Physics
AThens, GA

[Dan Walter]

"Not only can average Americans get such care for unusual or high-risk conditions, they routinely do so. "

Maybe, but many hospitals - especially teaching hospitals - priotize patients. Here is one such story: http://adventuresincardiology.wordpress.com/

[Lenore Howe]

Not many patients except the VERY wealthy were able to do this kind of work prior to the modern Internet. I started helping people find resources in 1994 when it was still very much blind postings in forums asking people to help. Now, anyone with the time and basic skills can track down new treatments and expert physicians. Sure, people still die, but lots of them are getting better treatment because of the Internet. We forget that it hasn't always existed. I am currently working on developing a database of very detailed information about expertise, rare conditions and new treatments that should help people find what they need, at least in the pelvic health area (www.sephiaschoice.com).

[DR]

I love the internet for expanding my own personal health care education. But, I have no doubt that patients who think they know better than their doctors about their potential treatments are not necessarily helping their own case.

A few hours on the web is not the same as years and years of medical education and practice.

Doctors are human. They will make mistakes. People will die. If it is someone in your family, you will be royally pissed off.

That's life.

There used to be a time not so long ago that most people put doctors up on a pedastel. Today, we seem to have swung the other way. If there is even the hint of a medical error, we are on the phone with our lawyers ready to sue anyone and everyone involved.

What kind of person would want to be an ER doc today?

Who would want the long hours, insane pressure, abuse from peole connected to the patient and the ever present threat of lawsuits?

Easier to become a plastic surgeon, put in some fake boobs and strike it rich