Someone in your corner

THE most valuable asset for coping with today’s medical system may be an adult family member -- preferably one who is well-educated, tactful, feisty and unemployed.

This ideal relative would stay at your bedside in the hospital to make sure overworked nurses notice if your vital signs are going downhill or to ensure that the right medications are given at the right time. He or she would research your disease, take notes during doctor visits and even ask the questions you forget.

But because many of us don’t have this perfect family member handy, so-called patient advocates are leaping into the breach.

It’s so early in the life of this new profession that it’s not entirely clear what an advocate is or how to judge whether you’ve found a good one. Some have minimal medical training, others are nurses and doctors. Some charge nothing, others thousands of dollars. Some advocates might help save your life, but others may complicate patient-doctor communication.

No regulatory body oversees or licenses patient advocates, but some people, companies and colleges see a need.

Sarah Lawrence College in Bronxville, N.Y., now offers a master’s degree in patient advocacy. The University of Wisconsin-Madison has started the Center for Patient Partnerships to train doctors, nurses, lawyers and others to help patients research their diseases, find doctors for second opinions and obtain insurance coverage. And the University of North Carolina at Chapel Hill is creating a set of courses to teach patient advocacy as a career.

The idea that patients would need an outsider to lobby for them inside a hospital is anathema to many doctors and nurses, who feel passionately that they are already advocates for patients, doing their best to get patients the care they need.

Moreover, most hospitals have staff members who are patient advocates -- folks who try to straighten out miscommunications between families and doctors and field complaints about bad food, parking and the like. Massachusetts General Hospital, for instance, has three such advocates who address everything from complaints about the food to disagreements between patients and doctors.

Still, in some situations, there is a need for another layer of patient advocacy. If you’re in the hospital, for instance, and want more constant monitoring than staff nurses can readily provide, you might consider hiring a private duty nurse, said Diana Mason, editor in chief of the American Journal of Nursing. She hired one recently for the first 24 hours after her sister-in-law had surgery.

The nurse acted as a “surveillance system,” Mason said, frequently checking blood pressure and watching for bleeding.

Hospitals often have registries of private-duty nurses, and some staff nurses are grateful for an extra pair of eyes and ears, Mason said. Insurers won’t pay, but if you can afford it, the cost -- $250 a day in Mason’s case -- may be worth the peace of mind.

If a fully trained nurse is more than you need, you can hire a “sitter” to keep an eye on a patient who might be in danger of pulling out tubes or falling.

In other situations, what you may need is a doctor willing to dig into the research your regular doctor may not know about. There aren’t many of these folks around -- yet -- but one of the pioneers is Dr. Gwendolyn Stritter, who runs a telephone-based advocacy practice in the San Francisco Bay area.

Stritter, an anesthesiologist who got fed up with her fast-paced practice, branched out five years ago into clinical advocacy. She charges $300 for an initial two-hour appointment, then a sliding scale after that.

Most of her clients are cancer patients. She reviews their medical records, combs six to eight online physician databases to find the latest research, then talks to the researchers who’ve done the studies. She also attends major cancer conferences.

Carolyn Greenspon, 37, a Newton, Mass., social worker and mother of two, used a patient advocate when her 4-year old son became sick last summer.

After an earlier colonoscopy under general anesthesia, her son had awakened hysterical (agitation is common in children when anesthesia wears off). And when he needed a second procedure, Greenspon had begged the doctors and nurses to sedate him better after anesthesia. “I am a pretty good advocate myself,” she says, but she felt her efforts failed when her son became hysterical again.

She then turned to PinnacleCare, a service based in Baltimore, that charges as much as $15,000 for an initiation fee plus a $10,000 annual fee for a range of services. Pinnacle’s advocate, Teresa Lepore, said she got the chief of pediatric anesthesiology to make sure “everyone at the hospital knew this was important.”

From Greenspon’s point of view, it worked -- the nurses carefully managed her son’s medication and he did not become hysterical after the third colonoscopy.

But the boy’s physician, Jeffrey Biller, a pediatric gastroenterologist at Massachusetts General Hospital, was less thrilled. The multiple calls from PinnacleCare personnel put an extra burden on his office staff, he said. “Putting a third party in who is not directly involved in patient care actually complicated the situation and made it more difficult.”

So if you’ve got a Wonder Woman, or Wonder Man, available to help you get what you need from the medical system, count your blessings. If not, consider hiring a private patient advocate. There’s a chance that adding yet another person to the mix may complicate your communication with nurses and doctors.

But it could also help get you the care you need.