Keeping doctors in the dark: why women don't discuss using alternative treatments for breast cancer

By Rebecca Sladek Nowlis

An increasing number of people are taking a duel approach to curing their ills
by testing the waters of alternative medicine while simultaneously
collaborating with their MDs.  Although recent findings indicate that patients
frequently don’t tell their medical physicians what kinds of alternative
therapies they’re using, the reasons for remaining silent have been unclear. 
Now, a UCSF researcher offers insight into why many women with breast cancer
choose to keep their forays into alternative therapies, such as traditional
Chinese medicine and nutritional supplements, to themselves.

Data from an ongoing five-year UCSF study indicate that only a third of women
with breast cancer disclosed using alternative treatment to their medical
doctors while almost all women discussed their biomedical treatment with their
alternative practitioners.

The findings will be presented as part of a symposium on women’s self care at
the 11th International Congress on Women’s Health Issues held in San Francisco
on Thursday, January 27, 2000.  The Congress is sponsored by the University of
California, San Francisco’s School of Nursing in affiliation with the
International Council on Women’s Health Issues and other co-sponsoring

“Understanding why women are hesitant to talk to doctors about their
alternative forms of medicine is critical to improving communication and
patient care,” said Shelley Adler, PhD, UCSF professor of medical anthropology
and principal investigator of the study.  “Some alternative therapies are
beneficial, some can be harmful, and others may interact with pharmacologic
therapies in significant ways.  It’s important for everyone involved to share
information openly.”

The three main reasons why women failed to discuss their alternative therapies
revolved around their attitudes toward physicians.  Impressions of physician
disinterest, anticipation of a negative response, and the belief that their
physician had inadequate training in or a bias toward alternative medicine
deterred women from discussing their use of alternative medicine.  Other
reasons included the perception that disclosing complementary and alternative
medicine use to physicians was not relevant or within the realm of the
doctor-patient relationship.

“Patients are very cautious about revealing their alternative medicine
practices to their doctors,” said Adler.  “Women seem to discuss their
alternative therapies when they perceive their physician to be respectful,
open-minded, and willing to listen.”

The study included 86 English-, Spanish-, or Chinese-speaking women diagnosed
with breast cancer who lived in San Francisco.  The women were divided into two
groups (between the ages of 35 and 49 or 60 and 74) in order to test for any
differences in age.

During a 30-month period, which began two to four months after an initial
diagnosis of cancer, the investigators conducted four, in-depth interviews
designed to encourage women to articulate their beliefs and practices regarding
health and illness.  The open-ended questions touched upon the patients’
experiences with and attitudes toward physicians and alternative practitioners
as well as any interactions regarding alternative medicine and biomedical
treatment.  The most common forms of alternative therapies used to treat breast
cancer were traditional Chinese medicine (such as acupuncture or herbs),
mind/body healing methods (such as prayer or meditation), and nutritional

The most frequently cited reason for lack of disclosure was the feeling that
the physician was not interested in the patient’s use of alternative medicine. 
Even in instances where patients attempted to initiate discussion, their
efforts were often not reciprocated, and unresponsiveness was taken as a sign
that the physician did not want to hear more about the patient’s practices,
said Adler.

The second most cited reason for lack of disclosure was an anticipation of a
negative physician response.  “Patients are aware of the persistent ambivalence
and occasional hostility of some biomedical practitioners toward alternative
medicine,” said Adler.

The study also dispelled two stereotypes surrounding alternative medicine.  The
researchers found that the use of alternative medicine is substantially higher
than what is reported in the biomedical literature—nearly 70 percent of the
study participants had used at least one type of alternative medicine before
the diagnosis of breast cancer.  The study also found that women between 35 and
49 consistently used alternative therapies more often than women between 60 and
74, both before and after their diagnosis.

“Our findings challenge the persistent stereotype that women who use
alternative therapies are desperate, older patients who are willing to try
anything,” said Adler.  “It is critical not to make judgments about who uses
alternative therapies on the basis of assumptions regarding age, socioeconomic
status, or ethnicity.  All patients have the potential to be interested in or
to use a variety of alternative treatments.”

The symposium on women’s self care will also include research on self care
actions of Myanmar domestic workers in Thailand, health beliefs and self care
in Appalachian women, and the influence of perceived workplace support in a
woman’s ability to resume employment following breast cancer surgery.