Wednesday, November 6, 1997
"The Relevance of Optimal Communication - Effects and Strategies for Improvement": A

Summary:

The subject of communication was discussed at the November meeting of the Bay Area Breast Cancer Forum. It was agreed that it is very difficult for newly diagnosed breast cancer patients to have good communication with their doctors. Physicians, breast cancer survivors, researchers and patient advocates sat in a circle and had an open discussion about the problem. The proposals that were made to ameliorate communication included encouraging women to make a list of their questions and taping their conversations with their doctors, having more chat rooms designated for breast cancer patients on the Internet, having a referral system for newly diagnosed women to contact breast cancer survivors who are close in age, occupation, race, etc. to them, having an "interpreter" who is a breast cancer survivor attend meetings with patients and their doctors, making it standard policy that physicians give copies of pathology reports and medical records to their patients and having tumor boards that patients can attend. The next meeting will be held on December 4 and will discuss the impact of breast cancer on children, mothers and family.

Bay Area Breast Cancer Forum Minutes from November 6 meeting:

Debu Tripathy, M.D. posed the question, "What did you do to research your options once you were told you had breast cancer?" to the breast cancer survivors in the room. Almost all of the women bought books from bookstores, compiled a list of questions to ask their oncologists and brought tape recorders to tape their conversations with their doctors.

The problem of patients having varying levels of knowledge about breast cancer when they are diagnosed and the problem of hearing and comprehending different aspects of breast cancer differently was discussed. It was agreed that it is very difficult to have good communication between a patient and her physician.

Several ways of aiding communication between patients and their doctors were discussed. Debu proposed the idea of having an interactive video disc that patients would watch to determine all of their possible treatment options based on the particular characteristics of the breast cancer tumor and of the woman herself. Someone asked whether a patient would watch the disc in the clinician's office or in their own home since one's surroundings can bias how they hear and comprehend information.

Brian Mayall proposed starting chat rooms for breast cancer patients. This type of patient collaboration was compared to obtaining information through support groups. Debu was apprehensive about this as he felt that patients were often misinformed or told about treatments that were suitable for someone else but not suitable for that particular patient's cancer. Michael Small, MD disagreed. He felt that physicians usually only heard the negative stories that resulted from collaboration and that chat rooms have a lot of benefit. Michael explained that when patients ask him about treatments that aren't suitable to them, he explains why this treatment would be good for some patients and not others. Debu agreed that he was probably only hearing the bad stories.

Barbi Schwartz is working with H.L. Ittner to develop a "buddy program" at CPMC. This program would have 2 components. One would be a referral list that would match newly diagnosed women with breast cancer survivors based on common characteristics like age, parity, race, etc. The second component would be having a breast cancer survivor at the hospital to visit all patients as they got out of surgery. Laura Esserman, MD felt that having the survivors visit the patients before they made their treatment decisions was of even more value.

This idea expanded into the idea of having a "translator" or a buddy in the room with the patient when she sees her doctor. This person would be a breast cancer survivor who would make sure that all angles of treatment were covered. The women said that "Why Me" has a training program for buddies. Another issue of concern for all the survivors was the fact that pathology and medical records are not given to patients as a standard procedure. Although the information is available on request, the women felt that this information should be given as part of their visit to the oncologist.

One woman also has a big problem with having a discussion with her doctor when she is undressed. It was emphasized that it's important for patients to be dressed when they meet with their doctors and to meet in a professional setting. The survivors also shared their experiences with tumor boards. The women who had gone to their tumor board meetings had had good experiences. At one hospital, the patient and her family was met by a social worker or nurse who explained the procedure, reviewed the patients questions and guided them throughout the meeting. The case was presented in front of the patient and then she was excused while the physicians discussed her case. She came back to hear their recommendations. At another hospital, the patient stayed in the room throughout the entire tumor board meeting.