Under contract with the National Cancer Institute, Fred Hutch provides a service vital to people seeking communication and compassion.
The calls come in from anywhere and everywhere, landing in a quiet warren of cubicles inside a South Lake Union building. “I just found out I have Stage 4 cancer in my throat,” drawls a voice that drips Texas. “I need to get all my teeth removed.”
Callers dial 1.800.4CANCER (1.800.422.6237) by the hundreds every day, and likely don’t know they’re reaching a call center in Seattle. In January, the National Cancer Institute awarded a multiyear contract to the Fred Hutchinson Cancer Research Center to administer its Cancer Information Service (CIS) Contact Center. The program operates from the Fred Hutch campus (calls are answered every weekday from 5 a.m. to 5 p.m. Pacific time) and serves the United States, Puerto Rico, the U.S. Virgin Islands and the U.S.–associated Pacific territories.
Center manager Dawn Sittauer, who used to be one of the roughly 80 counselors answering the phones, describes the mixture of hope and fear that pervades these conversations. Often, she says, it’s not the cancer patient who calls. It’s a loved one. “They can ask a question of us that they can’t ask in front of the patient,” Sittauer explains. “For example: ‘Is my husband going to die?’” Last July alone, the service handled almost 6,000 calls, about 500 of them in Spanish. (CIS also provides live chat services at cancer.gov/livechat until 8 p.m. Pacific time, and responds to e-mail inquiries at firstname.lastname@example.org.)
The nonprofit American Cancer Society (cancer.org) runs a similar operation in Austin, Texas, and estimates that it gets 1 million calls per year. A third large program is Cancer Care (cancercare.org), with decades of experience supporting patients and families. A common denominator among all these callers is economic anxiety. According to a 2006 survey bythe Kaiser Family Foundation, 25 percent of American families with a cancer patient used up all of their savings to pay for treatment. So part of the mission of a federal program like CIS is to ensure that people know about government-funded research and clinical trials. CIS counselors can match callers to trials that may be seeking participants, who can take part in research programs at no cost. These trials touch on all aspects of cancer—from prevention and early detection to treatment and supportive care—and occur at institutions all around the country, including Fred Hutch. Counselors also can help identify pharmaceutical companies that may provide medicine free or at reduced cost.
Of course, CIS counselors don’t have all of the fiscal answers, nor can they make diagnoses. What they do have is time. In many cases, callers have already talked to doctors, but it takes a while for the complexity of a cancer diagnosis to sink in. Interacting with the CIS counselors, who are trained to explain medical information and do not have any time limits placed on the calls they answer, allows patients and families to process information thoughtfully, and to straighten out any confusion. “We have calls that last an hour,” says center director Nancy Zbaren.
Information specialists are not required to be nurses or therapists, although some have master’s degrees or public health experience. They receive five weeks of training in how to gently question callers and then find the appropriate information about diagnosis, treatment choices and factors regarding hundreds of cancers from a variety of medic