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."
When Nancy Levitt's mother was first diagnosed with dementia 14 years ago at age 78, the doctor told her she could safely drive to familiar places. But Levitt, 61, who volunteers at UCLA's Center on Aging in Los Angeles, was still nervous. Unexplained nicks and dents started appearing on her mother's car. She forgot where she parked. Levitt tried to discuss driving safety with her mother, but she angrily denied there was a problem. Then, she would forget their talks about driving altogether.
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.