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Working the System

by Kairol Rosenthal

Knowledge image

Doctors make mistakes. Computers err. People are lazy. The healthcare system is buckling. When I think about sparing my lungs from metastases, saving my vocal chords from unnecessary surgery, and getting the best treatment regimen possible, I approach the challenges of the system as if I’m on a personal vendetta. I crush the system like a superhero who has grown a hundred times my size. I sleep at night knowing I have done everything within my power to influence my outcomes. This is my definition of well-being. Here are some tips I have learned that may help you work the healthcare system to your advantage.

Second Opinions
Most Americans will spend more time comparison-shopping for flat screen TVs than searching for the best doctor possible. This is your life we are talking about, and cancer is not something to take lightly.

Many insurance companies will pay for you to get a second opinion. Why? Because if you are misdiagnosed, it will cost them more money. When you get your second opinion, visit a doctor who is more specialized or has greater expertise than the first and who practices out of a cancer center with a higher volume of patients.

Most Americans will spend more time comparison-shopping for flat screen TVs than searching for the best doctor possible.

Any good doctor expects that you will get a second opinion and will give you a referral to a doctor who is more specialized or more knowledgeable. If a doctor scoffs at your getting a second opinion, that is a huge warning sign. It is fair game to ask for a second opinion at any stage in your cancer – for example, a second opinion on your treatment regimen, a new drug, or if you have a recurrence.

Where to Find a Great Doctor
Take a three-pronged approach, and see whose name keeps popping up:

1. Get word-of-mouth referrals from doctors, nurses, and other people who have your disease type.
2. Visit the home page of a top-notch hospital to see whether it specializes in your kind of cancer, and read bios of its doctors.
3. Scan journal articles on your disease to see whether an author’s name appears frequently.

Beware of books and magazine articles that rank best doctors of the year or best doctors in your city. These sources are little more than popularity contests among doctors and should not serve as the sole source for finding a good doctor. Doctor referral and doctor scorecard websites run by for-profit companies are also unreliable sources.

When you receive any referral to a doctor, ask what criteria the referral is based on: Is the doctor on a referral list because he or she paid to be on the list? Is a doctor’s name at the top of a list in a hospital’s physical referral network simply because the computer rotates new names to the top of the list on a daily basis? If an acquaintance recommends a particular oncologist, do you know why he or she liked this doctor, and are his or her standards the same ones you would use to evaluate who is the best doctor for you?

Know Who to Talk To
Get to know your doctor’s nurse and office staff. Be really nice to them whenever possible because they are key to making your administrative life flow smoothly. Most hospitals have a patient representative’s office, a patient services office, or an ombudsman who can intervene on your behalf if you are not receiving timely or adequate service. Never hesitate to use them. If a patient representative or an ombudsman is not serving you satisfactorily, ask to speak to that person’s supervisor and work your way up the chain of command; do not hesitate to call the office of the hospital’s CEO because he or she is usually capable of making things happen swiftly.

If you need to, file a complaint or at least threaten to file a complaint with your State Medical Board. Visit the website of the Federation of State Medical Boards at www.fsmb.org, or call 817-868-400, search the directory of State Medical Boards and link to or call your state board to file a complaint. You can also send a complaint, or threaten to send a complaint, to the Joint Commission, a hospital accreditation organization. Call (800) 994-6610 or visit jointcommission.org.

Stop at nothing to get your questions answered, the care you deserve, and the administrative support you need to make it all happen, but try not to do anything that would land you in jail.

♦ ♦ ♦ ♦ ♦

Kairol Rosenthal is a thyroid cancer survivor, healthcare blogger, and patient advocate. Visit her website at www.everythingchangesbook.com.

Excerpted from Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s by Kairol Rosenthal, copyright © 2009 by Kairol Rosenthal. Reprinted with permission of John Wiley & Sons, Inc.

This article was published in Coping® with Cancer magazine, January/February 2011.

 

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