While some researchers have been studying decisions for decades, the tools they have developed may be available only to patients in clinical trials. It's still rare for patients to get decision support as a routine part of care.
Even then, the help can go only so far.
Giving patients the education they need to fully understand their cancers, possible treatments, and themselves is unrealistic. "If we did this right, we could take a good six weeks just to help people make a decision, and it would be a seven-day-a-week" job, said Deborah Watkins Bruner, a University of Pennsylvania Health System nurse who studies decision-making.
Instead, decision experts provide questionnaires and reports that help patients evaluate priorities and treatments. Some include video of patients discussing their experiences.
They tend to focus on the early stages of diseases, such as breast cancer, that affect many people. Decisions in cancers that have spread, which tend to be more complex and individualized, are less amenable to this approach, experts said.
Tools from Health Dialog, a for-profit company that has found its primary market among insurers, including Independence Blue Cross, grew from work at Dartmouth University that found differences in medical care across the country.
Patients with newly diagnosed breast cancer at Dartmouth and Allegheny General Hospital in Pittsburgh all are offered a chance to use the Health Dialog decision aid.
Several advocacy groups use tools from competitor NexCura, which evolved from its founder's experience when his father was thought to have prostate cancer. Now part of Thomson Reuters, NexCura makes money by letting clinical trials and drug companies contact users who say that's OK.
In one of the most extensive efforts, Jeff Belkora, director of the Decision Services program at the University of California, San Francisco, pairs new college grads who plan to go to medical school with breast-cancer patients. The students help patients list questions for their doctors, then accompany them to doctor visits, take notes, and write a summary of what the doctor said.
Philadelphia's Wellness Community is testing a similar program for blood-cancer patients.
Fox Chase Cancer Center developed computer-based tools to educate patients with prostate and breast cancer and is working on similar aids for those with ovarian, gastrointestinal, and lung cancer.
The written information on prostate cancer and treatments is simple and clearly organized. There are filmed interviews with patients about their treatments. The program is now in testing.
Suzanne Miller, director of psychosocial and behavioral medicine at Fox Chase, plans to make such aids routinely available next year. Patients already can talk to cancer educators. She doesn't want to be one of the places that just keeps studying the problem. "We learn more and more," she said, "and we publish it in our journals and it doesn't get put into practice."
In the absence of such programs, patients can try hospital counseling services for decision-related anxiety. The National Cancer Institute's Cancer Information Service can answer questions about treatments by phone or online.
Thomas Jefferson University Hospital has an extensive "buddy" program that matches new cancer patients with people with the same cancer so they can hear about treatments firsthand.
Beyond that, patients, doctors, and decision experts alike recommend taking someone with you to doctors' appointments to at least get the information straight.
Rachel Fiol, a Lansdowne cancer patient, worries she will be too distracted or tired to understand everything herself. "I just can't hear some things, and that's why I bring my fiance," she said. "It's not that I don't want to hear it. Sometimes I just can't or I miss stuff."
Contact staff writer Stacey Burling
at 215-854-4944 or firstname.lastname@example.org.