THE BLOG
07/30/2009 05:12 am ET Updated Nov 17, 2011

Small Good News: Get Up, Stand Up! Stand Up for Your Medical Rights

Here is the hard truth about health-care reform: No matter how good it is, it won't come soon enough and won't be profound enough to spare all of us from insurance companies that seem to cover only what we don't need done, from hospitals that rival the military in terms of inflated costs, from doctors whose solution to insurance bureaucracies is to opt out of provider networks entirely.

People in their twenties embrace the philosophy of the movie War Games - "The only winning move is not to play" - and opt out, which seems to fit whether the subject is health insurance or global thermonuclear war. Those of us who have seen twenty twice, or three times, don't have that option. A better model for us might be the guy in the movie Network, the one who got everybody chanting "I'm mad as hell and I'm not going to take it anymore."

Yes, one of the most valuable health-related services we can provide is a dose of attitude. A little righteous curiosity; a demand for attention, for answers, for information, on behalf of anyone we know who's navigating the system.

One-on-one advocacy. Dr. Susan Love, breast cancer researcher and activist, used to say that a woman's ears stop working the moment she receives a diagnosis of breast cancer, and anyone who's ever had a bit of bad medical news knows what she means. Patients say it's hard to process all the information that follows - the important stuff about treatment options, strategies, prognosis, next steps - right after mortality has asked you for a date.

Those of us who visit the doctor alone need to advocate for ourselves: Bring a tape recorder and fire any doctor who doesn't want you to use it. Bring a notebook and write down everything you're having trouble hearing. Come up with a list of questions and get an answer to each one, even if the answer is "We don't know yet." Be the kind of dogged, insistent, thorough person you might not want as a best friend; this isn't a popularity contest but a research project.

Those of us lucky enough to have a family member or friend as a companion on this journey can ask that person to do the same. It works:

A patient spent an entire year pressing her insurance company for reimbursement for an MRI. When she finally got it, the woman in the insurance billing office congratulated her. "Most people don't hang in as long as you did," she confessed. "That's what the company depends on. People give up before they have to pay."

The daughter of an elderly surgery patient with a heart problem asked to meet the anesthesiologist, who was approximately twelve years old and a new resident, so the daughter politely but firmly arranged for a full-fledged doctor to handle the case instead. Yes, a resident has to learn some time, but perhaps not on an already-frail patient, at least not until he has a bit more mileage.

An oncologist recommended an arduous course of chemotherapy to a patient, although other specialists involved in the case felt it was unnecessary. The patient's companion had the notes from those other conversations, and statistics he had found on-line about the negligible efficacy of chemotherapy in similar cases. Faced with the data and the conflicting opinions, the oncologist retreated to the land of gut feelings and instinct.

None of this guarantees a happy ending, or even a less scary one, but it makes us more educated consumers, and increases the odds we're going to find the caring and compassionate medical people who want reform as badly as we do. You compare mileage stats when you buy a new car, you bunch up the material in a skirt to see how badly it's going to wrinkle before you buy it, you ask the grower at the farmers' market if he uses chemical fertilizer; why would you do any less when the service is health care for yourself or a loved one?

Being a patient advocate can mean as little as getting a patient an extra pillow or a glass of juice, and as much as helping to improve the quality of care. As a self-employed person who spends the price of a beautiful vacation on health insurance - an annual beautiful vacation, thanks - I'm as eager as anyone for a system-wide overhaul. In the meantime, we can't be toddlers waiting for someone to tie our shoes.