On a visit to her oncologist, breast cancer patient Vicki Tosher didn’t think to ask a key question about bone marrow transplantation: Might she interview other women who had undergone this procedure as a way to better gauge whether it was the right option for her?
Thanks to the guardian angel at her side — Tosher’s significant other, who did pose that question as her unofficial patient advocate — she later learned a bundle by speaking with three transplant recipients.
“When I went through the procedure, I was so well prepared I had an incredibly easy time of it,” says Tosher, co-founder and president of Sense of Security, Inc., an organization in Broomfield, Colorado, that provides financial and other support to patients battling breast cancer. “I firmly believe that was due in large part to the preparations I had made by talking with women who also had been through it.”
As Tosher and others with serious medical conditions have discovered, it pays to have an advocate looking out for your best interests, especially given this country’s fractured, maze-like health care system, the fleeting attention patients get from harried doctors and nurses, and the drive to slash medical costs — sometimes at the expense of treatment.
What exactly is a patient advocate? It’s a person who, either voluntarily or for a fee, helps someone navigate the health care system to make sure that patient receives proper care. And it’s a person who might save your life: according to the Institute of Medicine, drug-dosage and other medical errors at hospitals kill up to 98,000 inpatients a year. Some say that figure is too high — others say it is too low. Whatever the number, medical errors are a problem, and a new study suggests that this may be especially true when you are at your most vulnerable. The Agency for Healthcare Research and Quality studied patients admitted to two intensive care units and found that almost 10 percent of them suffered a preventable adverse event — usually due to being given the wrong dose of medication.
Even when health professionals are doing the best they can with the resources they have, a patient advocate can be a big asset, says Dr. Michael Potter, an attending physician at the University of California at San Francisco Medical Center.
“Primary care physicians often act as patient advocates when they can, but the reality is that most of us see too many patients to be able to do as good a job as we would like to,” Potter says. “So patient advocates are, I think, likely to be an important resource for people who need help getting medical information and making crucial decisions about their care.”
What advocates do
An advocate might speak out on the patient’s behalf when there are concerns, questions, or snags, such as denial of insurance coverage; gather information; record a doctor-patient session; make sure prescriptions are filled correctly; take charge of bills or paperwork; or ensure that caregivers follow up. He or she might also stay with a relative in the hospital recovering from an operation; many hospitals will provide extra chairs and fold-out beds for that purpose. “Years ago, my grandmother fell out of the hospital bed after an operation and lay on the floor for a hour with an IV in her arm,” reports a woman from Atlanta. “After that, day or night, someone in the family was always by her side.”
Close to home, an advocate could be a family member, a good friend, a support-group acquaintance, or someone who’s survived a similar ordeal and knows the ropes. At the hospital, it could be an advocate on staff, a compassionate clinician, a case manager, a social worker, even a chaplain.
Regardless, when it comes to quality of care for people with serious ailments, “another set of ears, another mouth, another set of eyes really can make a difference,” says Charles Inlander, president of the People’s Medical Society in Allentown, Pennsylvania, a nonprofit organization that educates consumers about their medical rights and health care.
Andre Pilevsky, a pharmaceutical industry consultant in Summit, New Jersey, learned the power of advocacy firsthand after doctors initially misdiagnosed his heart disease.
His sister, who was a medical resident at the time, urged him to see a specialist at the University of Pennsylvania (indeed, two of his coronary arteries were 100 percent and 90 percent blocked, tests revealed). She later made sure he got top-notch care there, which included angioplasty the day after the diagnosis.
“I think there’s a lot of truth to the squeaky wheel getting the grease,” says Pilevsky, who now takes three heart medications, follows a strict diet, and exercises regularly. Today, “I’ve probably never been healthier,” he adds.
Buying an advocate
No statistics are available on how many Americans have at some point served as patient advocate — or, as they variously call themselves, health advocate, personal medical advocate, or health facilitator.
But numerous regional or national volunteer groups, such as the Patient Advocate Foundation in Newport News, Virginia, as well as some hospitals, attorneys, and entrepreneurs, offer such services, predominantly in the cancer arena (see Resources below).
Dr. Vincent Riccardi, a licensed and board-certified internist in La Crescenta, California, has worked as an advocate since 1991. His firm, American Medical Consumers, charges a flat $50 to $200 to go to bat for patients who have trouble communicating with their primary care doctor, sorting through treatment choices, getting a recalcitrant health plan to pay for therapy, or addressing other concerns. (One of his tips: Carry your own medical records to a second-opinion visit rather than let a health care provider forward them, which could result in delays or incomplete or lost documentation.)
Riccardi likens his advocacy role to that of a tax accountant: Minimize health liabilities and maximize health returns. “It’s extremely frustrating trying to get the health care you need in the current setup,” he says. “It’s just so fragmented.”
A mother turned advocate
No one knows that better than Marilyn Azevedo, a registered nurse and rancher in Petaluma, California. Her son, Andy, died of clear cell sarcoma at 19, despite her three-year battle with an HMO to get him more comprehensive care.
Since then, Azevedo has written a book about her experience, spoken on the topic around the country, and advocated on behalf of cancer patients free of charge.
When doctors told a Midwest woman in her early 20s that a brain tumor would take her life within six weeks, her aunt in Florida phoned Azevedo for advice. On the Internet, Azevedo learned about brain-tumor clinical trials that were under way just 50 miles from the woman’s home and encouraged her to enroll.
The last Azevedo heard, the young woman was still alive.
“Andy and I came through a horrible experience for a reason,” Azevedo says. “We lost. But out of that came a certain strength that can’t be wasted when other people need help.”
Center for Medicare Advocacy
(860) 456-7790; (202) 216-0028
Citizen Advocacy Center
Patient Advocacy Coalition Inc.
Patient Advocate Foundation
People’s Medical Society
Society for Healthcare Consumer Advocacy
(800) 242-2626; (312) 422-3999
Interview with Vicki Tosher, co-founder and president, Sense of Security, Inc.
To Err is Human: Building a Safer Health System. November 1999 report by Institute of Medicine, National Academy of Sciences.
Interview with Charles Inlander, president, People’s Medical Society
Interview with Andre Pilevsky, heart disease patient
Interview with Dr. Vincent Riccardi, president, American Medical Consumers
Interview with Marilyn Azevedo, patient advocate
Interview with Michael Potter, MD, an attending physician and associate clinical professor at the University of California, San Francisco.
ICU Patients at Significant Risk for Adverse Events and Serious Errors. Press Release, August 8, 2005. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/press/pr2005/icuerrpr.htm