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Health Food Store Recommendations for Breast Cancer Patients
Carolyn Cook Gotay, PhD;
Daniella Dumitriu
Arch Fam Med. 2000;9:692-698.
ABSTRACT
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Context Despite cancer patients' widespread and growing use of complementary and alternative medicine, minimal attention has been paid to the role of health food stores in the "supply side" of this phenomenon.
Objective To gain a better understanding of health food store personnel's recommendations for breast cancer patient care.
Design Researcher posing as the daughter of a breast cancer patient and surveying health food store personnel on their product recommendations for cancer care.
Setting Oahu, Hawaii, summer 1998.
Participants All health food stores (N = 40) offering products for cancer patients.
Main Outcome Measures Recommended products and services, proposed mechanism of action, and costs.
Results Store personnel readily provided information and product recommendations, with shark cartilage being the most frequent. Suggested mechanisms of action drew on traditional healing, scientific, and pseudoscientific rationales. Costs for recommended dosages varied multifold across stores and brands.
Conclusions Retailers supplying supplements can play an important role in the network of "authorities" for patients with breast and other cancers, as they readily provide advice and recommend products. The reasons why patients seek health food store remedies are useful in developing approaches to patient education. Physicians and other providers are in a key position to assist cancer patients in making informed choices when considering health store products.
INTRODUCTION
SINCE 1990, the use of complementary and alternative medicine (CAM) in the United States has grown by 380%.1 The reasons for the recent surge in individual use of CAM are many and complex, including public distrust of medical establishments and government agencies and dissatisfaction with the amount of personal attention provided in cost-conscious health care organizations.2 The 1994 DSHEA (Dietary Supplement Health and Education Act: Public Law 103-417 S.784) relaxing labeling regulations on CAM products contributed to a boom in the "herbal" and "dietary supplement" industry. As public demand and the CAM industry balloons, investigations of CAM use abound in professional and lay journals. However, with the exception of a few reports and investigative journalism,3-10 minimal attention has been paid to an important aspect of the "supply side" of the CAM phenomenon.
Given increased interest in herbal products and supplements, health food retailers may be called on to serve not only as sales personnel, but also as health care educators and consultants. Federal law allows CAM advertisers to make structure/function claims about products—claims that a product may affect the structure or functioning of the body—but prohibits them from claiming a therapy can prevent or cure a disease. That is, a label may state that the product "promotes regularity," but not that it "alleviates constipation." Federal law also restricts people from diagnosing or prescribing without a license. Even so, commercial vendors who adhere to the legal guidelines may still be dispensing information and/or referring buyers to products with unspecified or potentially detrimental health effects.
This may be particularly true in the case of cancer patients. Cancer is a potentially fatal disease that is often not curable with currently available allopathic medical treatments, even though these treatments are highly morbid. Not surprisingly, oncology patients represent a large and receptive market for the sale of CAM therapies. Published reports of the prevalence of CAM use in cancer patients vary; a recent review of 26 surveys found reported use rates varied from 7% to 64%, with a mean across studies of 30%.11 Cancer patients look to CAM for cures, for treatment of adverse effects and other iatrogenic problems that may arise from allopathic/biomedical treatments, such as chemotherapy, radiation, and hospital stays, and generally to gain control over their health care and improve quality of life.
Complementary and alternative medicine use by cancer patients poses a number of serious concerns. For example, some CAM therapies have significant toxic adverse effects,12 while others may be contraindicated for use in conjunction with conventional cancer therapies.13-14 Furthermore, no quality control standards are in place for herbal supplements, allowing inconsistency in dosages and the potential for contamination.12 Contrary to the popular belief that CAM offers an inexpensive alternative to biomedicine, CAM can be costly. It is estimated that Americans spend in excess of $14 billion per annum on CAM treatments.15 Patients may delay or refuse potentially curative cancer treatments in favor of CAM. Awareness of these potential effects is essential if consumers and caregivers (in the broadest sense of the term) are to make responsible use of CAM.
The focus of this report is on health food store personnel's recommendations for breast cancer patient care. Our primary objectives are to identify CAM recommended for breast cancer, examine the retailers' proposed mechanisms of action for recommended CAM cancer therapies, and document the cost variation of suggested remedies.
MATERIALS AND METHODS
IDENTIFICATION OF STUDY SAMPLE
This study was conducted from April to August 1998. Health food stores were identified from the Oahu (Hawaii) Yellow Pages. Ninety-eight organizations were listed under the "health food stores" category. Twenty-nine were immediately excluded on the basis of being independent distributors rather than health food stores. Phone calls to the remaining 69 establishments resulted in the exclusion of 34 stores (eg, because of being independent distributors, out of business, specialty stores in areas of alternative medicine unrelated to cancer, such as allergies). The 35 remaining stores indicated that they carried supplements and/or herbal remedies. Five additional stores were identified from a booklet called The Natural Yellow Pages, a free, independently published resource that was available in one of the stores. These 40 stores constituted the sample for this study. This study was reviewed by the University of Hawaii's Committee on Human Studies and found exempt from Office for Protection from Research Risks regulations under section 46.101(b)(2).
PROCEDURES
Data were collected by an undergraduate research assistant with experience in psychosocial oncology research (D.D.) under supervision of the first author. She presented herself as the daughter of a breast cancer patient and told health store personnel that she was looking for cancer products for her mother. The researcher said that her mother had asked her to find out what was available because it was hard for her to talk about her cancer in public. She indicated that this was the first store she was visiting and that she was here to gather and record information for her mother and not to purchase any products at this time.
Great care was taken to create a highly plausible and accurate medical case study, which was reviewed by oncology professionals. The following case study was presented: during a routine checkup 2 months previously, the patient had been diagnosed as having advanced breast cancer with bone metastases. This occurred 5 years after initial diagnosis and treatment, which had consisted of surgical resection (lumpectomy) and 6 weeks of radiation therapy. The patient did not wish to take any further medications at that time. The patient was experiencing bone pain and taking tamoxifen, with chemotherapy planned if there was no response to the tamoxifen. The patient wanted to change her lifestyle because she had not been cured by conventional biomedical treatment. This scenario and case study were replicated exactly in each store that was visited for this study and did not vary.
The researcher rehearsed a script with questions and answers to enable conversation on topics ranging from describing the patient's cancer, illustrating symptoms, including physical and emotional pain, to answering any personal questions that might be encountered during conversation with store personnel. If a salesperson became uncomfortable with any questions that the researcher/customer posed (operationally defined as being unwilling or unable to answer the question), the customer stopped the line of questioning. To maintain plausibility, the specific dialogue between the researcher and the sales personnel varied from store to store. However, the initial scenario and case study did not vary, and in all cases, the researcher continued to ask questions until the retailer offered no additional suggestions. To maintain the anonymity of survey participants, no names of sales personnel were collected, and store names will not be identified in this or subsequent reports.
QUESTIONS ASKED
After the products to assist in metastatic breast cancer care were mentioned and/or shown, if store personnel did not provide any further information, the researcher asked the following questions: (1) How does the product work? (2) Do you recommend any particular brand (if more than one brand available)? (3) Could I write down some prices? (4) How much of the product does my mother need to take per day? (5) Can the product(s) be taken together with the medication my mother is receiving from her physician? and (6) Is there anything else you can recommend?
In all cases, specific details such as prices, names of remedies, how they were purported to work, and brand names were written down in the store. This strategy controlled for possible recall bias and was consistent with the study scenario that the researcher was gathering information for her mother. Full notes of any other information or observations were recorded in written form immediately after leaving the store. Follow-up telephone calls were made to 12 stores to obtain additional information and/or clarify missing data.
All data were transcribed according to the research questions listed above. Counts were made of various CAM modalities and costs and data were summarized by descriptive statistics. Proposed rationales for use were reviewed to identify common explanatory mechanisms, and each response was coded by 2 independent investigators. Any disagreements were resolved through discussion.
RESULTS
STORE RECOMMENDATIONS
A number of salespersons were reluctant to provide any information (ie, they did not answer the question at all or responded in an indirect manner). For example, some salespersons said that they were not knowledgeable about cancer, or they were concerned about the legality of giving advice. In the words of 1 person, "Even a verbal prescription can get you into trouble nowadays." Another health food store worker discouraged the customer from purchasing herbs or natural remedies for cancer. He explained that CAM may work for prevention and perhaps treatment of "small tumors," but cancer calls for "heavy duty medications." Others made a number of recommendations, providing direct advice or referring the customer to literature or Internet sources on cancer and CAM, to CAM practitioners, or suggesting lifestyle changes, such as diet, exercise, and prayer. Personnel at 4 stores did not make any product recommendations, whereas in 36 stores, 1 or more products were suggested.
Only 5 stores (13%) asked the customer questions about her mother, such as her age, more information about her cancer site, and time of diagnosis, before making recommendations. Eight stores suggested that the customer's mother participate in a structured program usually provided by the store, such as consultation with a store-employed specialist, a personalized program of products, or diagnostic tests. These tests included iridology (which uses a flashlight and power scope to examine the iris of the eyes for parasites in the glands and organs); muscle testing (in which individuals hold tubes of supplements, with the expectation that their muscles will "give way" when holding the tube of an agent in which the individual is deficient); and blood analysis (which involves testing the blood for "parasites and crystals"). Nine stores (23%) referred the customer to CAM practitioners, namely naturopathic practitioners and acupuncturists.
The most common form of advice was referral to information sources on cancer and/or CAM. Twenty-one stores (53%) directed the customer to books, articles, and brochures, including promotional material with ingredient lists, physician and/or patient testimonials about a product's effectiveness, and general health advice (eg, information about blood analysis, parasite treatment). The most popular in-store reference or suggested book purchase was Prescription for Nutritional Healing.16 Five stores kept this publication on hand (usually behind the counter) to be used as a reference by store personnel and customers. Ten stores (25%) provided the customer with a brochure on a specific product from the commercial distributor.
A number of store personnel (35%) made recommendations by stating which products were most popular for cancer among store clients. For instance, in one store the customer was told that the store was not allowed to recommend anything, but that most people bought shark cartilage and maitake mushrooms. Eight stores (20%) suggested a change of diet (eg, macrobiotic diet, eating brown rice, and minimizing animal proteins since they cause excess acidity), and 1 store suggested the patient exercise for better health. Seven stores (18%) directly or indirectly counseled against the use of orthodox cancer therapies. For instance, in 1 store, an employee explained that that sometimes it is better to "do your own thing," because natural remedies have no adverse effects. In another store, the customer was given a book section to read about ill effects from tamoxifen. Five store workers mentioned the importance of maintaining a positive attitude in treating cancer, and 3 commented on the value of prayer, religion, and spirituality.
CAM PRODUCTS RECOMMENDED
Thirty-eight different CAM products were recommended for breast cancer care by 36 health food stores (out of 40 surveyed), as shown in Table 1. The most popular single item was shark cartilage and oil (recommended by 17 stores). Plant-based products were frequent suggestions, particularly agents that could be taken in tea form, such as essiac and wheatgrass. Dietary supplements were also suggested by a number of stores, with coenzyme Q10 and vitamin C being the most frequent recommendations.
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Products Recommended for Metastatic Breast Cancer by Health Food Store Personnel*
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Some stores suggested specific brands. For example, 1 salesperson helped the researcher select the best value for shark cartilage, advising her to buy powder because it is cheaper than capsules, and to buy a particular brand with a fruit punch flavor instead of the "fishy-tasting" alternatives. He also explained the best program for ingesting antioxidants and suggested that the patient should take 5000 mg of beta carotene per day and buy vitamin C without the acid so as not to upset the stomach. One store clerk advised the researcher to select brands with particular essential ingredients, such as D-fraction in maitake mushroom supplements and GE 132 in germanium brands. The same salesperson recommended that essiac should be bought in liquid form for "convenience."
RATIONALES FOR SELECTION OF CANCER CAM PRODUCTS
In many cases, store personnel provided the researcher with a verbal explanation and/or written material on why a particular CAM product might benefit her mother. The comments below represent comments made by the salespersons. In some cases, store personnel read aloud from written materials they maintained in the store.
Personnel frequently stated that certain CAM products worked by being "cleansing," and others by bringing the body back into "balance." One store provided a pamphlet about the importance of the "cleansing principle," with a list of the "signs and symptoms of toxicity," such as "circulatory deficits," "high blood fats," and "fatigue." In one case, essiac herbal tea was recommended because it is "a gentle but deep cleanser." Similarly, 1 store manager explained that the red clover (Trifolium pratense) "cleansed the blood" and that cancer was "primarily a blood disease." A clerk stated that a chlorophyll product "cleanses" and "balances." As 1 salesperson explained, fresh-water algae chlorophyll balances the "acidic bodies" typical of cancer patients by making the body alkaline. It also cleanses the body by "stimulating bowel movement, aiding in the discharge of toxins from the liver and kidneys."
A number of products were said to be "immune-boosters" (eg, shark cartilage, maitake mushroom, coenzyme Q10, vitamins, Astragulus, chlorophyll, garlic, una de gato). Health food store salespersons also cited biologic and pharmacologic mechanisms for CAM recommendations. For example, inositol hexaphosphate, a derivative of the B-vitamin inositol and natural component of grains, "increases natural killer T-cell activity." Flax seed oil was said to contain "essential fatty acids that help protect the cell." The logic behind the use of most popular recom-mendation, shark cartilage, was that "sharks don't get cancer" (also the title of a 1992 book by biochemist/promoter William Lane that was available in the store).17 The premise of this theory is that sharks are cartilaginous, with avascular shark cartilage purported to contain an antiangiogenic protein that inhibits the growth of new blood vessels needed for the spread of cancer.
COST VARIATION
The costs of CAM products varied widely. Yearly costs were calculated according to the dosage recommended on the product label. The price of a 1-year course of shark cartilage treatment ranged from $499 to $1066, essiac preparations from $360 to $3433, and maitake from $300 to $1050.
COMMENT
This study provides some of the first evidence about the role of health food stores in cancer patient care. As in the case with any single study, particularly in a novel area, our study has a number of limitations. The consistency of data collection was strengthened by having a single individual collect all the data using a standardized and consistent approach; however, at the same time, the responses obtained may be been affected by characteristics of the researcher. It is possible that an older person, a man, or someone presenting herself as a cancer patient rather than a family member might have elicited different responses. In addition, we were limited to store personnel who were on duty; it is possible that other salespersons would have varied in their approaches. However, this situation is comparable with what a cancer patient or family member encounters when entering such a retail establishment. While this investigation was conducted in a single state, many of the stores surveyed are branches of national chains that are available to customers across the country. Health food store recommendations may reflect only the tip of the iceberg: as supplements and other CAM therapies have become increasingly part of the mainstream in recent years, such remedies are also available in many drugstores, supermarkets, and through the Internet. The phenomenon of cancer self-care, in consultation with retailers, has emerged from the underground and can be found at the mall and corner grocery. As our cost analysis indicates, costs of even a single CAM regimen are highly variable and far from trivial. We invite other researchers to replicate and refine research in this area.
This study provides information about why CAM—and health food store products in particular—may appeal to cancer patents. Many store personnel used the terms cleansing and balancing to describe their products. These terms are healing metaphors found in many traditional medical systems worldwide, including Chinese and Ayurvedic medicine. Many of the agents recommended in fact reinforce a customer's perception that they are "cleansing," since they are purgatives. For example, pau d'arco (Tabebuia) has the adverse effect of inducing vomiting at high doses,18 wheatgrass has an emetic effect, and Astragulus membranaceus is a diuretic. For patients who look for physical evidence that disease has exited the body via the expulsion of bodily fluids,19 these agents are likely to be seen as effective.
Complementary and alternative medicine marketers also appeal to consumers' desire for scientific confirmation of effectiveness by employing the language and look of the scientific medical establishment (ie, by having employees wear white lab coats, using advertising that includes charts, graphs, physician testimonials, and excerpts from scientific journals). In some cases, traditional medical and conceptual frameworks were translated into scientific, and sometimes pseudoscientific, terms. For example, the rainforest vine popularly known as una de gato or cat's claw (Uncaria tomentosa) is described as a powerful adaptogen, a scientific-sounding term coined by the CAM community to describe products that enhance the immune system and serve as a general "tonic" for good health.18
The most common rationale for CAM product selection cited by store personnel, immune-boosting, conceptually straddles the line between traditional and biomedical explanatory models. It is common in traditional cultures to identify certain agents as strengthening or fortifying,20-21 while biomedical scientists also refer to immunostimulant, meaning "an agent that will cause antibody formation."22 While the term immune-boosting might have significance for both CAM and biomedical practitioners, the therapeutic potential of an immune-booster, and its application in cancer, are only marginally understood, as knowledge of the complexities of the immune system is still incomplete.23
Another reason why patients may be attracted to health store products is that they are natural, and, by implication, less toxic than medications prescribed by the physician and, at a minimum, unlikely to do any harm.24 However, this perspective is belied by the philosophy behind cancer drug discovery and development in the United States, much of which has been based in derivatives of plant products.25 It follows that health food store products are likely to have properties that affect cancer itself and/or interact with therapies patients may be using. Although many health store personnel were conservative about giving advice (whether refusing altogether or making suggestions by proxy of other customers or store literature), others were not. It is difficult to measure an employee's knowledge of cancer and CAM in a brief interaction, and the quality of written materials presented varied tremendously. However, it can be safely stated that many suggestions made by store personnel pose potential health risks. For instance, no salesperson mentioned any potential adverse effects of using store products alone or in combination with conventional cancer treatments, although a few salespersons advised the customer/researcher to consult with a physician about how CAM products might affect their disease or interaction with cancer therapies.
Shark cartilage, the most popular recommendation, is an example of an agent where caution is warranted. There are reported cases of hepatotoxicity,26 as well as nausea, fever, dizziness, and hypercalcemia, among shark cartilage users.27 A growing body of research is also beginning to reveal potentially dangerous interactions between CAM and conventional cancer agents,12-13 a particular concern since there is evidence that many patients do not inform their oncologists about their CAM use.24, 28 For example, dietary supplements, such as ginger, garlic, and wheatgrass, can act as or interfere with anticoagulants, which can pose serious concerns in cancer patients.29 In general, the use of high doses of antioxidants during chemotherapy can counteract the effects of chemotherapeutic agents and prevent patients from receiving the full benefit of treatment.14
At the same time, CAM remedies may have beneficial effects in helping cancer patients tolerate adverse effects of cancer treatment, although few controlled trials have examined effectiveness of such agents with respect to specific cancer treatments; for example, valerian may lessen anxiety, St John's wort may help with depression, and peppermint tea may mitigate symptoms of diarrhea, indigestion, and nausea.30 A number of studies are ongoing to test the efficacy of CAM treatments on cancer survival. One such study, a recently published phase 1 and 2 trial of shark cartilage, demonstrated no clinical benefits for advanced cancer patients.31 Another, however, found significant increases in survival for patients with advanced cancer who had received a fish oil and vitamin E supplement.32 It is likely that there will be new results emerging in the near future from other trials in this active research area, and the interested reader is referred to a number of sources providing up-to-date information (including http://nccam.nih.gov [National Center for Complementary and Alternative Medicine]; http://www.cancernet.nci.nih.gov [National Cancer Institute]; http://www.cancer.org [American Cancer Society]; http://www.quackwatch.com [Quackwatch]; and http://www.herbalgram.org/ [American Botanical Council].
Retailers supplying supplements and their employees can play an important role in the network of "authorities" breast and other cancer patients consult for their care, because of their accessible locations, long hours of service, and friendly sales staff. This study confirms prior reports4-5 that found health food store employees readily diagnosed the etiology of cancer and related symptoms, and recommended complementary and alternative approaches to cancer therapy, including in-store products and out-of-store practitioners. Our study found that minimal cautionary information was provided by most retailers, despite the fact that many of the salespersons surveyed in this study had good interpersonal skills and were very enthusiastic about sharing information with their customers. Health care organizations might consider educational activities aimed at these individuals and the general public to increase knowledge and promote cooperation rather than antagonism. Such education could increase the probability that both consumers and sales personnel would consult providers about possible drug interactions and other concerns related to health product use in the future.
Understanding why people select health store products is essential to forging cooperation between the multiple experts and information sources that influence health decisions. This study documented multiple rationales that salespersons provided for their product recommendations, some of which drew on concepts from traditional medical systems. Providers may wish to consider this information and provide explanations of therapeutic options that are consistent with the patient's system of beliefs and values. For example, physicians could explain chemotherapy in terms of cleansing the body of cancer cells and explain the natural plant-based origin of many chemotherapeutic agents. The study also demonstrated that invoking scientific validity and the trappings of science is an important sales strategy used by health food stores. Assuming this is an effective sales technique, we can infer that, rather than being hostile to biomedical science, consumers who seek CAM therapies weigh scientifically based data heavily in their considerations. Researchers and clinicians have the training and insight to help their patients distinguish between scientific and pseudoscientific claims. At the same time, they can invoke appropriate cautions about the unfounded and possibly dangerous claims that health stores may make.
There are a number of factors to be considered in the judicious use of CAM, especially for oncology patients. Effectiveness, cost, possible toxicity, drug interactions, and bioavailabity of active ingredients and dosage variation should be evaluated carefully by cancer patients before selecting CAM products. Concerned providers must be willing to broach and maintain communication about this subject with their patients; Eisenberg33 has provided useful suggestions for how providers can discuss and monitor CAM use in their patients. Optimal use of CAM remedies now and in the future will only occur with knowledgeable and responsible participation by all parties—patients and families, physicians and allied health personnel, and retailers.
AUTHOR INFORMATION
Accepted for publication May 19, 2000.
We thank Lisa Gollin, MA, Joan Holup, MA, Brian Issell, MD, and Gertraud Maskarinec, MD, PhD, for their suggestions and input.
Corresponding author: Carolyn Cook Gotay, PhD, Cancer Research Center of Hawaii, 1236 Lauhala St, Honolulu, HI 96813 (e-mail: cgotay{at}crch.hawaii.edu).
From the Cancer Research Center of Hawaii, University of Hawaii, Honolulu.
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