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."
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.
Before his diagnosis, Farrell says, "I knew absolutely nothing about colon cancer." And, he admits, at first he behaved a bit like a sheep. His doctor said he needed surgery, and so he checked in as soon as possible. During the recovery period between surgery and his first appointment with the oncologist to discuss chemotherapy, he had a lot of time to think. He swung into research mode. "I got on my computer and began to find out quite a bit," he says. "By the time I went to my oncologist, I was very well informed."
It's important to note that not all information on the Internet is accurate -- and just because a treatment is available, it may not be right for you. But besides making efforts to educate yourself, Farrell says, it's important to let your doctor know you're doing it -- and that you don't want to be an uninformed, passive patient.
Play an active role
As an educated patient, you are an active part of the healthcare team, say advocates of this approach. That means asking questions about your condition, for starters.
Other suggestions on becoming an active patient, outlined in the AHRQ's new booklet, "Improving Health Care Quality: A Guide for Patients and Families" (available at http://www.ahrq.gov/consumer.qntlite, or by telephone, (800) 358-9295) include:
- Ask why a treatment is needed, how it can help, and the potential downsides.
- Don't assume a doctor will contact you about a test result or that "no news is good news." Ask when the result will be available and who to call to get it.
- Tell your physician about all medicines you take, even over-the-counter ones, especially if he or she plans to alter your treatment plan.
- If surgery is suggested, ask for details on what the operation involves, the expected results, any potential complications, and how you can best prepare.
Find advocates and support
Reaching out to others for information and support can help, whether your problem is minor or life threatening. When Don Pugh, 55, a computer consultant from Woodside, Calif., learned he had prostate cancer last year, he called his brother, who lives in Boston and recently had undergone the same surgery as Don's physician had just recommended: removal of the gland. Find the best surgeon you can, his brother stressed, one who is well versed in the so-called "nerve-sparing" surgery that won't make you impotent and incontinent -- two possible side effects -- assuming that technique won't compromise your cure (tumors that are not confined to the capsule of the prostate may not be completely removed with the nerve-sparing technique).
Pugh also found an ally on his HMO's patient relations staff, a person who truly was an advocate for patients, he says. When he asked for success rates of the HMO's doctors for the nerve-sparing procedure, she tried to find them. She helped in other ways, large and small.
Support also can come from those who aren't in the healthcare field, says John Metz, chairman of the California Consumer Health Care Council, a nonprofit patient advocacy organization. Talk about your problem and the proposed treatment with friends and family members, who can act as sounding boards, he suggests. Once you start talking about a condition with which you've recently been diagnosed, you might find a number of people with similar conditions among your circle of family and friends.
Your specific condition may have an organization devoted to helping those diagnosed with the disease. Farrell, for instance, found the Colon Cancer Alliance, a New York-based organization devoted to patient support, education, research, and advocacy. He now does volunteer work for the group.
Reports about the quality of healthcare plans, hospitals, and doctors are increasingly available from private and public organizations, allowing anyone to check out a doctor or hospital before undergoing surgery (and a health plan, when you are contemplating a change). The Agency for Healthcare Research and Quality, for instance, offers its Consumer Assessment of Health Plans, which can be accessed at its site. For quality reports on Medicare managed care plans, call (800) MEDICARE, or find them online at http://www.medicare.gov. Among other organizations that offer evaluations: the National Committee for Quality Assurance, http://www.ncqa.org, and the Joint Commission on Accreditation of Health Care Organizations, http://www.jcaho.org.
If you'd like to check out a surgeon before consenting to an operation, begin by determining if he or she is board certified by visiting the site of the American Board of Medical Specialties (http://www.abms.org), which verifies board certification for 24 specialties.
Don Pugh went much further than simply verifying that his surgeon was board certified. He wanted to know how many of the nerve-sparing prostate surgeries had been performed by the doctor his HMO had selected to do his prostate surgery. So he asked, straight out. "My urologist said he did one in the last month," says Pugh. He wanted a surgeon who performed two or so a week, reasoning that he or she would be the most skilled. "I'm not going to an amateur," he told his HMO.
Complain if it's warranted
Pugh's request to go to a more experienced surgeon was heard -- sort of. His HMO referred him to another clinic in San Francisco, but Pugh didn't care for that surgeon, either. So Pugh turned to the California Consumer Health Care Council for help. The nonprofit organization, like others across the country, helps consumers deal with healthcare problems, guiding them through such actions as filing complaints.
Pugh filed a grievance against his HMO, asking it to pay for an outside doctor, a surgeon at Stanford University who had studied under the pioneer of the nerve-sparing method, had performed more than 500 surgeries, and had assured Pugh that 69% of his patients remain potent and 95% are still continent. His request was denied.
So Pugh decided to go ahead with the surgery -- time was of the essence -- and pay the Stanford surgeon out of pocket. The bill would be $33,000. Pugh was prepared to pay, but at the 11th hour, his HMO agreed to pay for the out-of-plan specialist.
If Pugh has just one suggestion on how to be your own best advocate, it's to be persistent. "I was spending two or three hours a day on this," he says of his efforts to get the best possible surgeon.
Persistence not only paid off, it might have saved his health and lifestyle. Today, Pugh is healthy and has avoided the side effects of impotence and incontinence. Had he not taken such an active role, he's not so sure his story would have had such a happy ending.