The mean age of participants was 52.5 (standard deviation = 14.1; range = 43-92), 9 were women, and 6 were married. The participants were white (9); Asian or Pacific Islander (5); Chinese; Filipino; Japanese; or Native Hawaiian). Participants were well educated, with the majority having past or present professional, managerial, or technical occupations. Five were retired at the time of the interview. Eight of the participants had breast cancer, and the rest had gastrointestinal cancer (3), prostate cancer (2), or skin cancer (1). Most of the participants had localized disease. The stage of disease was unknown for 4 participants, because they had declined procedures (eg, lymph node excision; exploratory surgery) to determine stage. Six participants reported that they had refused all conventional treatment (3 localized disease and 3 unstaged). Five participants reported undergoing surgery for the cancer but rejected all further treatment. Three participants had surgery and chemotherapy or radiation but reported refusing further treatment (eg, second surgery) that their physician considered necessary.
Procedure
Three human subjects research committees approved the research protocol. One- to 2-hour tape-recorded interviews were conducted in person at the participant’s home or another location in late 1998 or early 1999. All participants were compensated with a $20 gift certificate, and all gave signed informed consent.
Outcome measures
The semistructured interviews covered (a) demographics, (b) satisfaction with health care providers, (c) conventional treatments received for cancer and satisfaction, (d) types of CAM used for cancer and satisfaction, and (e) perceptions about cancer and cancer treatments.
After reading all the interview transcripts, the research team engaged in an iterative process in which we coded the text according to the nature of information, developed hypotheses and then translated the coding into categories.21 Responses were coded using NUD*IST 4,22 a software package for qualitative analysis. We assigned coding for: (a) reasons for rejecting conventional treatments, (b) types of CAM used, (c) reasons for choosing CAM, (d) beliefs CAM’s effectiveness, and (e) communication with physician. We included quantitative data (ie, demographics, disease characteristics, and types of CAM used) from the survey and from the tumor registry as a triangulation technique21 and to aid in describing the sample.
Results
All 14 participants used 3 or more types of CAM (max=14; median=8; Table 1), and all took some herbal or botanical supplement; 11 reported diet changes, and 7 used meditation or relaxation. Two participants attended CAM cancer clinics for intravenous therapy. One participant worked with a native Hawaiian healer, with whom she learned to gather and prepare traditional herbal remedies.
Three broad categories of themes emerged in the analysis: (1) beliefs about conventional treatment, (2) interactions with treatment providers, and (3) beliefs about CAM as an alternative to conventional treatment. Participants’ supporting quotes are shown in (Table 2, Table 2a)
Beliefs About Conventional Treatment
Conventional Treatment Is Harmful.. When asked to describe their reasons for declining conventional cancer treatment, participants described many ways that chemotherapy and radiation were harmful, including damaging cells, weakening the immune system, or inhibiting recovery. In the extreme, participants believed that conventional treatment would be fatal for them. Those who declined either a first (n=6) or a second (n=2) surgery commonly expressed concerns about mutilation (being “cut”) and the debilitating effects of surgery. A number of participants mentioned concerns that conventional treatment would increase their risk of future cancer. Participants also mentioned being deterred from conventional treatment by possible side effects, previous negative experience with a treatment, or knowing someone who died from the treatment.
Conventional Treatment Will Not Improve Outcome. Several patients expressed that conventional treatment was not likely to make a difference in disease outcome, either because of limitations inherent in conventional treatment or because of the particular characteristics of their disease. Often, the participants cited their belief that conventional treatment offered no complete guarantee for a cure. Although none of the participants disputed the validity of their cancer diagnosis, a few participants believed that cancer treatment was unnecessary because the cancer had been eliminated by initial treatment. One participant proposed that fate, not treatment, would decide her disease outcome.
Interactions with Treatment Providers
Nearly all participants (12 out of 14) stated that they had informed at least one of their physicians about CAM, and 2 had not. Nine respondents reported that their physicians were either supportive or neutral about their use of CAM. In the context of participants’ decision making about conventional treatment, participants expressed that they felt physicians could not be trusted, that physcians did not listen to their needs, and that medical professionals were hostile or threatening about participants’ treatment choices. Participants’ responses also indicated possible missed chances for communication between patient and physician about both conventional treatment and CAM. A minority of participants described feeling alienated from the medical community.