For the 10 million Americans who are living with cancer or have survived it, one factor may be most indispensable for keeping their spirits intact: communication. In recognition of this, the National Cancer Institute plans to issue a special report by November 1, co-authored by a University of Rochester physician, stating that effective communication is truly essential to good cancer care and deserves more research.
Without the ability to understand what is happening, how can patients make life-altering medical decisions, cope with and find meaning in their journey, or navigate a complex health care system"
“The public is really struggling with these issues,” said co-author Ronald M. Epstein, M.D., professor of Family Medicine, Psychiatry and Oncology at the University of Rochester, and Director of the Rochester Center to Improve Communication in Health Care. “You can have the best treatment in the world but if you don’t understand it, or have access to it, it does you no good.”
Traditional relationships with doctors dictated that patients followed orders and trusted the professionals to solve all problems. Modern society and modern medicine turned this upside down: Access to the Internet and treatment advances have changed what used to be a deficit of information into information overload. As a result, both patients and physicians must have the skills to communicate so they can filter, deliberate together and manage the uncertainty that comes with cancer.
“In short, communicating clinical evidence is more than just ‘stating the facts,’” according to the NCI report. “Communication is necessary during all phases of the cancer continuum from prevention through survival and end-of-life care.”
Epstein and co-author Richard L. Street, Jr., Ph.D., professor and head of the Department of Communications at Texas A&M University, were commissioned by the NCI Division of Cancer Control and Population Sciences. Their work, titled “Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering,” written in collaboration with NCI scientific staff, identifies priorities for research in cancer communication that could lead to better patient outcomes.
For example, the report addresses how doctors typically present survival data to patients. How should a doctor relay that Treatment A might result in a 70 percent chance of surviving for five years, with a 10 percent chance of harsh side effects, while Treatment B might result in a 60 percent chance of survival with minimal side effects" What is the best way to frame information to reduce patient anxiety and yet not be overly hopeful"
“All of this can be studied empirically,” Epstein said. “Ultimately, we need to structure our health care system so that it fosters excellent communication and improves access to information, particularly among those patients who are most disadvantaged.”
Epstein noted that other countries are ahead of the United States in some ways. Patients in the United Kingdom can write notes in their own medical records; Australians receive audio recordings of their doctor visits. The NCI report underscores a previous report by the Institute of Medicine (IOM) that identifies “patient-centeredness” as a cornerstone of improved health.
The report will be available online after November 1, 2007, at http://outcomes.cancer.gov/pcc/communication. A limited number of printed copies can also be obtained at that time by calling 1-800-4-CANCER.