March 26, 2001 -- After doctors diagnosed Richard Farrell with colon cancer in 1996, he underwent surgery and then chemotherapy. With the affected portion of his intestine removed, he thought he was on the road to recovery. But in 1999, more tumors were discovered. His surgeons said these were not operable and sent him back to his oncologist. She talked to Farrell about a regimen to make him comfortable but not cure him.
"'Palliative' is what she called it," recalls Farrell, a 67-year-old retiree who divides his time between Amsterdam, N.Y., where he worked 30 years as a senior food inspector for the state, and Florida, where he escapes the cold winters. The more his oncologist talked about making him comfortable, the more uncomfortable Farrell became. "I don't like the idea," he blurted out. Next thing he knew, he heard himself saying, "I want to go to Memorial Sloan Kettering."
Since Jeanne Erdmann's mother was diagnosed three years ago with dementia, she has taken on the daily responsibilities of bathing and dressing her mom, preparing her meals, making sure she takes her medicine, and managing her finances.
"It wears you down. I think it's the grind of having someone there every day who needs more and more attention," says Erdmann, a medical journalist in Wentzville, Mo. Although she says she's happy to be there for her mom, Erdmann acknowledges the toll caregiving ...
His oncologist knew physicians at the renowned New York City cancer center and referred Farrell, who ended up in a clinical trial to test a new chemotherapy regimen, which for him turned out to be fairly successful. During his last exam, doctors told him they found no evidence of new tumors. But scans indicate there is a now a spot on his lung, and whether that represents something to worry about remains to be determined.
Through it all, Farrell, who is still on chemotherapy, says he tries to stay positive, buoyed by the support of his wife and four children. What does remain constant, however, is his take-charge attitude, which began the day he decided he didn't want to go home and just die.
Taking an active role in your healthcare is good for you, research suggests. The more actively involved you are in your healthcare, the better your results tend to be -- and the more satisfied you feel, according to the federal Agency for Healthcare Research and Quality (AHRQ). But developing an assertive attitude is not always second nature, especially for seniors who grew up in the "Doctors are God" era.
Fortunately, help is at hand. Growing numbers of patient advocacy organizations are springing up, ready to guide consumers through complaint processes or refer them to other sources of help. Agencies such as the AHRQ, a part of the U.S. Public Health Service, are producing guides on becoming an active patient. And patients like Richard Farrell are sharing their stories, inspiring others to emulate them.