Patient Advocacy Someone in your corner

[Guest guest]

Someone in your corner by Judy Foreman

Advocates act as a go-between for patients and doctors. But a third

party can be costly and may not be welcomed by medical personnel.

http://www.latimes.com/features/health/la-he-

advocates15may15,1,7745023.column?coll=la-headlines-health

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.

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 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,

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, 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.

[Guest guest]

Too right Gretchen, and I like it!

EdM from NH