Newsletter #27–December 1994
What Breast Cancer Survivors Want
by Ferris Crane
Most women fighting breast cancer turn to their friends first rather than doctors when they have health care questions, according to women who participated in recent focus groups conducted by The Women’s Health Advisory Committee, a committee which advises the San Francisco Department of Health.
The groups were organized to learn how satisfied women are with current health care services. Over 18 groups were convened in all, one of which included cancer survivors. Many of the women were troubled by physician insensitivity, lack of empathy, and inability to address their anxiety. One was told that she had breast cancer not by her doctor, but by a resident. Another said a strange physician told her she was going to lose her breast, then asked her to sit in the hall, alone. Many complained that test results were not given to them immediately.
Women also stated that they were not informed about the details of their disease, all the treatment options, or the effects of drugs. None was aware that the law requires a woman to be fully informed of standard treatment options by brochure. One woman was given an experimental protocol without being told it was experimental. Another complained about the side effects of chemotherapy to her physician who said, “it's just stress.” No woman was informed about clinical trials.
Case coordination also seemed to be practically non-existent, and explanations of treatment were minimal. Said one woman, “You’ve been catapulted to this other planet with terms, words and drugs you've never heard of…and you are just out there.” A group leader said she was taken to a tumor board by a physician in nuclear medicine only because he was interested in the case. If women got second opinions, they were selfinitiated.
Physicians routinely isolated symptoms and disease rather than seeing cancer in the context of women’s lives. Not one woman was asked about stress and nutrition. Not one health care provider asked about physical environment, care of children, availability of care takers, financial wellbeing during and after treatment, or quality of emotional support. Physicians continued to use the disease model with women even after extended periods of wellness.
Despite the importance of obtaining information and making one’s needs known, the majority of women in the group said that they can’t be honest with their health care provider. After going through the current provider system, the women said they turned to friends first with health care questions or relied on self-diagnosis. “I try to take care of problems at home,” one woman stated. Most agreed that since they have had breast cancer, they tend to go less to physicians if they have a problem but think they are generally healthy.
This is all the more disturbing since research has shown that the type of support a woman receives and where she goes for initial treatment may be pivotal in determining her survival.
Here are some of the group's suggestions for change.
- Put a patient advocate in every hospital, including persons of specific cultures.
- Have a computer program available to patients at all hospitals that gives current information on treatment options, trials, entry criteria, trial protocols, and descriptions of available drugs and their side effects.
- Develop a computerized list of survivors so that newly diagnosed patients can be quickly matched with survivors.
- Hold support groups for physicians.
- Make test results for cancer immediately available to patients.
- Reorient the medical model from one of disease to one of wellness.
- Put financial counselors in every hospital.
- Require insurance to cover wigs, breast forms, reconstruction, and psychological help as part of treatment.
- Develop a multi-disciplinary approach to treatment and health promotion including but not limited to herbalists, nutritionists, and spiritual leaders such as medicine men.
- Develop one-stop health care centers which offer all pertinent information under one roof and coordinated treatment plans in which patients participate.
In short, the focus groups said they want a new model of health care in which all women receive basic care regardless of employment, insurance, marital status or health status. They also want a broader range of coordinated services, and they want the services to be of high quality, sensitive, and culturally appropriate.
The Committee agreed that we must develop a new model of health care delivery because currently, when a woman is diagnosed with breast cancer, she may find herself fighting one of her toughest fights by herself—that of saving her own life.