Contemporary Unorthodox Treatments in Cancer Medicine
  

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By: Cassileth, Lusk, Strouse, Bodenheimer

In 1984 this paper was an eye opener for many in the therapeutic field. Not many had realized how often concerned patients looked to the unconventional or to alternatives in therapy. Also revealing was that those who sought the unor­thodox were not uneducated or terminally ill. Further, it was striking that often it was the trained physician who was willing to support the unorthodox. For some it was a relief to discover that the "establishment" had not straight-jacketed all physicians.

Because of this paper, there has been a willingness by others to pursue the problem of unorthodox therapies. The researchers made no effort to support the unconventional and in fact, have been quite dubious about some of the "unconventional" therapies.

From the Psychosocial Programs. University of Pennsylvania Cancer Center, Philadelphia, Pennsylvania. Annals of Internal Medicine. 1984;101:105-112.
Reprinted from ANNALS OF INTERNAL MEDICINE Vol. 101; No. 1 July 1984


Contemporary Unorthodox Treatments in Cancer Medicine: A Study of Patients, Treatments, and Practitioners

Public education, legislative action, and medical advances have failed to deter patients from seeking unorthodox treatments for cancer and other diseases. To study this phenomenon, we interviewed 304 cancer center inpatients and 356 patients under the care of unorthodox practitioners. A concomitant survey of unorthodox practitioners documented their backgrounds and practices. Eight percent of all patients studied never received any conventional therapy, and 54% of patients on conventional therapy also used unorthodox treatments. Forty percent of patients abandoned conventional care entirely after adopting alternative methods. Patients interviewed did not conform to the stereotype of poorly educated, end-stage patients who had exhausted conventional treatment. Practitioners also deviated from the traditional portrait: of 138 unorthodox practitioners studied, 60% were physicians(M.D.). Patients are attracted to therapeutic alternatives that reflect social emphasis on personal responsibility, pollution and nutrition, and that move away from perceived deficiencies in conventional medical care.

In the face of increasing biomedical proficiency in the conventional treatment of cancer and other diseases, new unorthodox therapies, bearing little resemblance to lae­trile, krebiozen, and other treatments (1-4), appear to be gaining popularity. Although lists compiled by the Amer­ican Cancer Society and other groups cite contemporary unproven treatments (5-8), little is known about their relative popularity, how and by whom they are dis­pensed, the scope and reasons for their acceptance, and the patients who seek them out. This study details the nature and specifics of unorthodox cancer treatments, practitioners, and clients. The study also is an inquiry into the reasons for the sustained and apparently growing appeal of anti-medicine, non-medicinal, lifestyle-oriented alternatives during a period of technologic advance in orthodox medical care.

One major difference between current and past uncon­ventional treatments is that today's treatments tend not to be directed toward a specific disease. Rather, they are promoted as techniques applicable to the cure and treat­ment of most chronic illnesses. Therefore, information on unorthodox cancer treatments presented here is relevant to other diseases as well.

Several terms (unproven, unorthodox, unconventional, alternative) are used here interchangeably, as they are by patients and practitioners, to refer to those treatments and methods deemed by established medicine to be un­proven (5), unorthodox or ineffective (6), fraudulent, and so on.

Methods
An early goal of this investigation, and one that was a prereq­uisite to meeting other objectives, was to identify popular alter­native therapies and to identify practitioners offering these ther­apies. Alternative or unorthodox therapies were defined for purposes of this study as treatments that are both used specifi­cally to cure cancer, and are not part of anti-cancer therapies used by the medical establishment. Unorthodox regimens were identified gradually as counterculture publications and initial discussions with cancer center patients produced information and contacts that led to additional sources of information and names of additional practitioners. All participants, patients and practitioners, were promised and granted anonymity. Patient data were derived from two sources. First, patients at our can­cer center were interviewed to document the prevalence of the use of unorthodox therapies in this population. Second, inter­views were conducted with patients under the care of alterna­tive practitioners.

Subjects and Procedures
Accrual of Cancer Center Patients: Adult inpatients under treatment at the University of Pennsylvania Cancer Center were identified from computer lists produced daily by the Hos­pital of the University of Pennsylvania. Physicians in the cancer center gave blanket permission to interview their patients for this study. Patients' charts and physicians were consulted to identify patients who had been diagnosed for a minimum of 2 months and were aware of their diagnosis. Inpatients who met study criteria were approached consecutively and invited to participate. Eight percent of patients declined participation; the total sample included 304 patients from the Cancer Center.

All patients signed consent forms and were interviewed in their hospital rooms. Interviews consisted primarily of open-ended questions and required approximately 1 hour to complete. Because the cancer center is a referral facility, patients are demographically heterogeneous and live in suburban and rural areas of surrounding counties and states as well as in urban Philadelphia.

Accrual of Unorthodox-Therapy Practitioners: During the same 2.5-year period, a total of 256 practitioners of unorthodox therapies and treatment clinics were identified from various na­tional sources, including counterculture newspapers, periodicals and other publications, advertisements, lists provided by alter­native-therapy resource centers and organizations, patients, and other practitioners. With preference given to those within geographic proximity, 229 individual practitioners and clinics were contacted by telephone or mail as they became known to us. The purpose of the study was explained and it was made clear to practitioners, as it was to patients, that this investigation would not attempt to evaluate nor discredit the efficacy of unor­thodox therapeutic regimens.

Seventy-two practitioners and clinics contacted claimed not to treat cancer patients or to have no patients with cancer among their clients at the time. The pool of 138 practitioners and 19 clinics (all of those contacted minus those who did not treat patients with cancer), constitute the sample of practition­ers in this study.

Table 1. Demographic Characteristics of 660 Patients by Type of Therapy Received

 

Accrual of Patients Receiving Unorthodox Therapy: The practitioners and clinics dispensing unorthodox therapy were also asked to have their patients participate in this study: 23 refused; 6 claimed inadequate staff or time; 15 had too few patients to make their pursuit worthwhile; 26 stated that they would ask their patients to participate, but we did not hear from them; 9 practitioners were associated with clinics that did refer patients; and negotiations are still underway with an addi­tional 33 practitioners. Repeated telephone contacts or personal visits over several months sometimes were required to overcome suspicion or reluctance and to gain cooperation. An eventual total of 34 practitioners and 11 clinics agreed to provide access to their patients through lists of names or other means. Partici­pating sources were similar to the larger potential group in terms of therapies applied, geographic location, and percentage of physicians.

A total of 515 patients receiving unorthodox treatment were accrued directly or contacted sequentially from lists identifying 695 patients at time of data analysis. Of these 515 patients, 38 (7.7%) refused participation, 47 had died, 17 said they were interested but too ill to talk, and 33 had been diagnosed for fewer than 2 months or were excluded because they claimed to use unorthodox treatment for psychological rather, than physical benefit.

Interviews were conducted with the remaining 380 patients. The possibility of bias introduced by type or source of unortho­dox therapy was tested for the 380 patients interviewed. Seven sources of patients were represented: inclusive lists of all pa­tients currently associated with clinics, organizations, or practi­tioners across the country (227 names); lists provided by prac­titioners who first obtained patients' consent for their names to be included (32 names); practitioner-generated lists that we could not be certain were unedited (40 names); direct accrual of patients who responded to their practitioners' requests that they contact us (20 names); a printed list, publicly available, of patients associated with a major national organization (17 names); referrals by other patients (20 names); and miscellane­ous referrals (17 names). Analyses of demographic, clinical, and attitudinal variables by these seven sources showed signifi­cant differences for one source only: the printed, publicly avail­able list of patients associated with a national organization. The 17 patients included on that list were deleted from the sample.

Seven additional patients were later deleted because they were diagnosed by iridology (9) or another unorthodox diag­nostic technique. All other patients, the total of 356 accrued outside of the cancer center, stated that their diagnosis was by a physician using tissue biopsy or they had been treated by physi­cians with chemotherapy, radiation therapy, surgery, or all of these.

Of these patients, 219 were interviewed in their homes and 137 were interviewed by telephone after signed or verbal con­sent was obtained. In each case, interviews were conducted af­ter initial arrangements with the patient for a convenient date and time. Interviews with these patients were identical in for­mat and content to those conducted with cancer center patients.

Table 2. Clinical Characteristics of 660 Patients by Type of Ther­apy Received

 

The study sample comprises patients from 26 states and the District of Columbia. Pennsylvania residents account for 42% of the sample not from the cancer center.

Content of Patient Interviews
Interview format and items were developed, tested, and re­fined for this study. Interviews addressed patients' experiences with both standard and unorthodox treatment for malignant disease. Specific topics included patients' knowledge of conven­tional therapies (chemotherapy, radiation therapy, surgery) and of unorthodox therapies that they had tried or with which they were otherwise familiar.

Demographic information included age, sex, race, religion, education, marital status, current members of household, num­ber of family members who had died of or been diagnosed with cancer, political preferences, and membership in groups or soci­eties. Clinical information included how, when, and by whom the specific diagnosis was made. Data on stage of disease at diagnosis and at initiation of unorthodox therapy were obtained when possible through hospital records or by close questioning of patients.

The interviews explored patients' reasons for using or reject­ing conventional and alternative treatments as well as patients' evaluations of each treatment and type of practitioner. The start and end dates of each therapy received were recorded to ascer­tain whether unorthodox treatments, if tried, were received be­fore, concurrent with, or after standard care. Other interview items elicited whether patients had informed the person provid­ing conventional or alternative care about their involvement with the other type of care; the response of conventional practi­tioners to the patients' use of unorthodox remedies and the reaction of unorthodox practitioners to patients' conventional care; and the bases on which patients evaluated the effectiveness of each treatment.

Patients were questioned about their opinions of government and medical establishment efforts with regard to cancer treat­ments; their attitudes toward responsibility for their own health, illness, and recovery; and their perceptions of whether and how their illness may have been prevented. Information about the costs of unorthodox therapies and about insurance coverage was solicited from the last 202 patients.

Responses to open-ended interview items were categorized for analysis. Data were analyzed by prediction analysis (10), tests of proportion, chi square, t-tests, or analysis of variance, as appropriate. Where lack of statistical significance is reported, the minimum detectable differences were computed using a two-tailed alpha and beta risk of 0.05 and 0.2. respectively. Data on practitioners and therapies are reported descriptively.

Results

Characteristics of Patients
Three sets of respondents emerged from the total sub­ject sample: patients treated with conventional therapy exclusively; patients who had used both conventional and unorthodox therapies; and a small group of patients who had received unorthodox treatment exclusively (Table 1). Specific diagnoses and other clinical characteristics are shown in Table 2.

Differences in performance status by the three treat­ment types represent an artifact of subject selection: Pa­tients on conventional therapy were inpatients under ac­tive treatment at the University of Pennsylvania Cancer Center; patients on unorthodox treatments were found primarily through practitioners who provide outpatient care.

Among demographic variables, only race and educa­tion were substantially related to the use of unorthodox therapies. Patients on unorthodox treatment exclusively or in addition to conventional therapy tended to be white (p < 0.00001) and better educated (p < 0.00001) than pa­tients on conventional treatment only. Forty-three per­cent of patients who used alternative therapies initiated this practice when their disease showed distant spread; 42% had localized tumors or no evidence of disease at that time (Table 2). Most patients (77%) were not re­ceiving chemotherapy or radiation therapy when they be­gan alternative treatments. Time since diagnosis did not substantively influence patients' views or behavior.

Among cancer center patients, 13% had used or were using an unorthodox regimen. Comparisons were made of cancer center patients who used conventional therapy exclusively versus cancer center patients who tried unor­thodox treatments as well. Analyses showed no signifi­cant differences between these two groups by diagnosis, sex, race, education, religion, marital status, history of cancer in the family, political preferences, or stage of dis­ease at diagnosis.

Table 3. Percent of Patients on Conventional and Unorthodox Therapies


Prevalent Unorthodox Therapies
From the group of treatments known to us and identi­fied by patients, six types of unorthodox treatments emerged as commonest among patients studied (Table 3). In descending order of frequency of use these includ­ed: metabolic therapy, diet therapies, megavitamins, mental imagery applied for anti-tumor effect, spiritual or faith healing, and "immune" therapy.

Metabolic therapy, received by 161 patients, is based on the principle that toxins and waste materials in the body interfere with metabolism and healing, and that cells lack the nutrients essential to health. Cancer and other chronic illnesses are viewed as the result of the degeneration of the liver and pancreas, and of the im­mune and "oxygenation" systems. Treatment is directed at cellular "detoxification and restoration" (11, 12). Metabolic regimens differ by practitioner, but they in­clude at least two of the following: detoxification, typical­ly through colonic cleansing; special diets; vitamins and minerals; enzymes; and, occasionally, laetrile. The most frequently used combination consisted of the first three components.

Sixty-five percent of patients received metabolic thera­py from M.D.s (Table 4). With the exception of 19 pa­tients, most of whom were treated in Mexico, patients received metabolic therapy in the United States. Most patients (61%) felt that metabolic therapy cured their disease, effected remission, augmented other therapy, or prevented spread; and 73% believed that metabolic ther­apy had a positive effect on their general health (data not shown).

Table 4. Type of Practitioner from Whom Patients Received Unorthodox Therapies

The second most commonly used treatment, diet thera­py, was tried by 134 patients. These therapies, which dif­fer from metabolic treatments in that they involve diet alone, are based on the "you are what you eat" principle, and consist exclusively of specified food products, pre­pared and consumed in a particular manner. Permitted foods differ by program or practitioner. The macrobiotic diet, selected by 85 persons (63% of those on diet treat­ments), is based on Eastern yin-yang philosophical prin­ciples and on a fully formulated alternative concept of physiology and disease (13, 14). A "mother red blood cell," housed in the intestine, is viewed as the progenitor of all body cells, tissues, and organs. Food intake must be carefully balanced to counteract bodily dysfunction. The notion of balance is perceived as vital to treatment as well: "yin" foods are prescribed for "yang" cancers, for example. The macrobiotic diet consists primarily of whole grains and an emphasis on miso, a product of soy­bean fermentation that is believed to have anti-cancer properties (14).

Self-care was practiced by 24% of patients on diet therapies, whereas over half were treated by naturopaths, homeopaths, nutritionalists, and lay affiliates of particu­lar dietary approaches ("other" category, Table 4). Al­though only 35% of patients on diet treatments felt that the diet had a positive impact on their cancer, 58% be­lieved that the therapy affected their general health in a positive fashion.

Megavitamins represented the third most commonly used unorthodox treatment, tried by 92 patients. This approach involves consumption of one or several vita­mins, with dosage level and specific vitamins differing by practitioner and regimen. Megavitamin therapy is based on the belief that high-dose vitamins strengthen the body's capacity to destroy malignant cells (15, 16). Me­gavitamin therapy was administered by physicians to 36% of patients, by chiropractors, 10%; and by patients themselves, 32%. Megavitamins were perceived to have worked against the cancer by 43% of patients, and to have had a positive effect on their general health by 53%.

A total of 89 patients used mental imagery as a means of treating their disease (patients who used mental imag­ery only for anticipated psychological or emotional bene­fit had been excluded from this study). Imagery requires the patient to visualize or imagine the destruction of ma­lignant cells in the body (17). Reversal of the malignant process is seen as the result of psychological influence on the body's capacity to counteract the malignant process. Patients able to judge the effect of imagery on the course of their illness were divided in believing that it was bene­ficial (42%) and that it had no effect (43%). No patient felt that this approach had exacerbated their disease.

Spiritual or faith healing attracted a total of 71 pa­tients. This method involves the use of prayer, incanta­tion, laying on of hands, and similar practices directed at cancer cure through divine intervention or exorcism of the evil represented by disease (18). Although 37% of patients evaluated spiritual therapy as having had no ef­fect on their disease, almost half assessed spiritual or faith healing as beneficial in this regard, and 79% believed that it had a positive effect on their general health.

"Immune" therapy, used by 57 patients, refers here to injections of "interferon," autogenous vaccines, fetal tis­sue, and other "immune supportive" agents applied for

therapeutic effect. Immune therapy here does not include the use of such agents in conventional clinical trials or in orthodox medical settings. This approach is based on the belief that cancer develops and thrives because of defec­tive immune mechanisms. Treatment, therefore, is geared to bolster the patient's deficient immune system. Slightly under half of these patients were treated in clinics or offices in the United States; most of the remaining pa­tients received immune therapy in the Bahamas. Over half of the patients were treated by M.D.s, and approxi­mately one third received immune treatment under the auspices of a practitioner who was neither a physician nor a osteopath. Patients' assessments of immune therapy were generally positive; 53% believed that it worked against their cancers and 63% felt that it had a positive effect on their general health.

No set of demographic characteristics characterized patients on one kind of treatment compared to those on other types. However, patients who selected imagery were somewhat better educated (79% had at least some college education) than were patients in other groups (54% to 60% had at least some college education). The cost of unorthodox regimens was relatively modest (Ta­ble 5), with most patients spending under $1000 for the first year of treatment. Immune therapies were more cost­ly, in part because of travel expenses. Insurance covered some costs of unorthodox therapies for 34% of patients (Table 5).

Table 5. Cost and Insurance Coverage by Percent Patients for Initial 12 Months of Unorthodox Therapy


In addition to these six major types of unorthodox treatment, some other therapy was used by 37% of pa­tients who had tried both conventional and unorthodox therapies, and by almost half of the patients who had used unorthodox therapy exclusively. Over 40 different additional therapies were each used by at least 1 patient. Most popular among these other therapies were botanical treatments (31 patients), wheatgrass therapy (25 patients), and detoxification alone (25 patients).

Botanical therapy (19) comes from folklore practices of many cultures around the world. These therapies in­clude, for example, various herbal poultices or teas such as chapparal (an American Indian remedy), Jason Win­ters' tea (a contemporary mixture), and Iscador (mistle­toe, a cure dating back to the Celtic Druids).

Wheatgrass therapy is based on the belief that rotting food in the intestine forms toxins that circulate in the bloodstream and cause cancer (20). Because heat is believed to destroy the enzymes essential to adequate diges­tion, only raw or "live" foods are prescribed. Sprouted foods, particularly wheatgrass, are consumed for their curative properties. This treatment also includes detoxifi­cation by colonic irrigation and liquified wheatgrass ene­mas.

Detoxification therapy is based on a similar premise, but most practitioners prescribe coffee instead of wheat-grass for colonic cleansing. The rationale here is that the caffeine in brewed coffee (never instant coffee) is ab­sorbed and carried to the liver, where it stimulates the production of bile. Bile in turn restores the normal alka­line condition of the small intestine, furthering the elimi­nation of toxins (21). Others believe that the coffee simply cleanses the liver by causing it to exude bile. How­ever, the drinking of coffee is strictly forbidden in these regimens.

Patients’ Adoption of Unorthodox Therapies
Most patients adopted an alternative treatment in the belief that it would control their disease: 41% expected the therapy to effect a cure or remission; 18% anticipated prevention or halt of metastatic growth. These expecta­tions were less than fully realized: 22% of patients on imagery, 43% on megavitamins, 53% on immune thera­pies, and 61% on metabolic regimens believed that these treatments were effective (in bringing about cure or re­mission, augmenting other treatments, or preventing spread). Chemotherapy was judged similarly efficacious by 56% of patients, radiation therapy by 59%, and sur­gery by 72%.

Asked what attracted them to unorthodox therapies, the most frequently given response (39% of patients) referred to the "natural, nontoxic" qualities of alternative regimens. Six percent of patients who adopted unortho­dox treatments did so because their physicians "said they were terminal."

Of the 378 patients who used alternative therapies, 53 rejected conventional treatment of any kind (Table 1). These patients received only unorthodox therapies after diagnosis based on tissue biopsy in a conventional medi­cal setting.

Of the 325 patients who used conventional as well as alternative therapies, 64% sought conventional treatment first, adding alternative treatment an average of 24 months later. An additional 18% began conventional and unorthodox therapies simultaneously, and 18% sought unorthodox therapy first, adding conventional treatment an average of 9 months later.

Of patients who used both treatment types, 40% dis­continued conventional care entirely in favor of alterna­tive regimens, after an average of 8 months on standard therapy. The remaining 60% of patients pursued both kinds of treatment simultaneously.

The use of unorthodox therapies was related to how patients first became aware of their illness. Self-identifica­tion (of a "probable cancer" or other symptom) oc­curred in 77% of patients who used conventional therapy exclusively and in 73% of patients who used both con­ventional and unorthodox treatments. In contrast, only 58% of patients who pursued alternative treatments ex­clusively had themselves identified an initial manifesta­tion of disease (p < 0.01). The remaining patients had had cancer diagnosed during a routine medical examina­tion or when seeing a physician for another problem.

Patients’ Views
Patients who had used unorthodox therapies differed substantively in their beliefs about illness and treatment from patients using only conventional therapy (Table 6). Most patients receiving alternative therapies, with or without conventional care, believed that their type of cancer could be prevented, primarily through diet (32% of patients), stress reduction (33%), and environmental changes (26%). These patients believed further that dis­ease in general is caused mainly by poor nutrition, stress, and worry (data not shown); that chemotherapy and ra­diation therapy are useless or more harmful than helpful; and that unorthodox cancer treatments are beneficial. Pa-held an opposite set of beliefs.

Although almost all patients who received alternative treatments believed that patients should take an active role in their own health care, 74% of patients on conven­tional therapy shared this view. Patients' reports of their experience with conventional and unorthodox practition­ers also were consistent with their choice of treatment. Patients receiving conventional therapy were more likely to have good relationships with physicians than were pa­tients under conventional as well as alternative care, and these patients in turn reported better experience with physicians than did patients who sought unorthodox treatment exclusively (p < 0.0001). The medical profes­sion as a whole was viewed in decreasingly positive terms according to whether patients had received standard care, both types, or unorthodox treatment only (p < 0.0001). Opinions of unorthodox therapists moved in the opposite direction according to the same criteria.

More than half of all patients studied, regardless of treatment, felt that the government and the medical es­tablishment attempt to deny freedom of choice in cancer treatment (Table 6). This view holds that the federal government, the medical establishment, the pharmaceuti­cal industry, and other major groups willfully mislead the American public and withhold curative therapies (22, 23). However, patients receiving conventional care were more likely to ascribe benevolent motives to this effort, such as the government's desire to protect the public or its maintenance of an overly conservative or cautious stance. Patients who used alternative therapies were more likely to interpret establishment efforts in terms of vested economic interests. Neither political beliefs nor organiza­tional membership distinguished among the three treat­ment groups.

Table 6. Patient’s Views of Cancer Prevention and Treatment by Type of Therapy Received


Most patients (75%) receiving unorthodox treatment with or without conventional care told their physicians about their use of alternative care, and 82% informed their unorthodox practitioners about receiving conven­tional treatment. Although 39% of conventional physi­cians reportedly reacted with disapproval, 30% were sup­portive and 12% were neutral. Four percent of patients said that their conventional physicians refused to contin­ue seeing them as a result of their involvement in unor­thodox practices. Twenty-two percent of unorthodox therapists were supportive of the patient's conventional care, 36% were neutral, and 21% disparaged convention­al therapy but agreed nonetheless to continue treating the patient.

Choice of therapy was associated also with patients' general dietary changes since diagnosis. Consistent with their differing beliefs, only 14% of patients on conven­tional care changed their diets after diagnosis, compared with 57% of patients on both conventional and unortho­dox treatment, and 66% of patients receiving alternative care only. Changes consisted primarily of an increase in fresh as opposed to processed foods, and of a decrease in the consumption of foods with preservatives.

Unorthodox Practitioners
Information was obtained on 138 practitioners and 19 alternative-therapy treatment clinics, including those that referred patients to this study. A total of 83 practitioners (60% of the practitioner sample) proved to have M.D. degrees. Medical degrees and licenses were verified for all but the 5 physicians in this sample who practice outside of the United States.

Three physicians were found to have had their licenses suspended for reasons related to their unorthodox prac­tices. Eighteen percent of physicians practicing unortho­dox therapy were verifiably board certified in internal medicine, family practice, surgery, neurosurgery, urolo­gy, or psychiatry, and 81% were trained in the United States. These physicians represent a wide age range, and maintain practices in general or family medicine (23%), internal medicine (14%), preventive medicine (8%), nu­trition (8%), and various other areas. These physicians practice in 20 states and the District of Columbia. Five physicians practice in four foreign countries. The 40% of unorthodox practitioners who are not physicians repre­sent the range of other backgrounds shown in Table 4.

Unorthodox therapy clinics, located in 11 states and two foreign countries, typically are staffed by several peo­ple representing various backgrounds. Eight clinics have physicians or osteopaths on staff. Most clinics maintain some kind of inpatient facility or provide meals and lodg­ing for clients and often for family members as well. Met­abolic therapies, diet treatments, and detoxification are most commonly practiced. These clinics reportedly treat thousands of patients annually.

Discussion
This study shows that patients who use unorthodox therapies are well educated, frequently asymptomatic, and are in the early stages of disease. Only 25% initiated alternative regimens while under active conventional treatment, and 40% of patients who had used both treatment types had discontinued conventional care after adopting an alternative therapy. Major factors associated with the use of unorthodox treatments included patients' belief that their cancer could have been prevented and therefore was now reversible by the same means, dissatis­faction with conventional practitioners and health care systems, and preferences for nontoxic regimens and for an active role in treatment.

Although the patients came from 26 states across the country, it is possible that regional preferences may have skewed the relative popularity of unorthodox treatments used by the patients studied. The most commonly used alternative treatments were metabolic, diet, and megavi­tamin therapies. These and other unorthodox therapies were adopted with the expectation that they would con­trol the disease. Most patients spent under $1000 for the first year of unorthodox care, and 50% spent under $500. Of 138 practitioners of unorthodox therapy studied, 60% were physicians and 18% were board certified.

Although unorthodox therapies differ by underlying concepts and treatment mechanisms, they share a com­mon perspective. Cancer and other chronic illnesses tend to be viewed not as disease entities, but as symptoms of underlying dysfunction, disorder, or toxicity (24). Thus, treatments are geared toward improving the patient's own biologic and psychic capacity to counteract illness. Most patients find the internal logic and global, mind-body emphasis of this perspective intuitively correct and fundamentally appealing.

Both the overall orientation and some of the specific practices associated with unorthodox therapies are con­sistent with the popular contemporary focus on physical fitness, proper nutrition, and improved mental attitude. The practices are also consistent at some level with con­ventional medicine's emphasis on environmental causes of cancer, with established conclusions that ". . . a num­ber of dietary variables may contribute to the develop­ment of human cancers" (25), and with media reports that "the Federal Government is putting new emphasis on research aimed at preventing cancer through dietary means . . ." (26). Further, similar to the contemporary experience in England (27), currently popular unortho­dox methods are not entirely repudiated by conventional­ly trained physicians: 60% of unorthodox practitioners in this sample are physicians; and 30% of patients' conven­tional physicians supported the use of alternative treat­ments.

Intrinsic to the belief in unorthodox therapies is that conventional cancer treatments weaken the body's re­serve, inhibit the capacity for cure, and misguidedly ad­dress the symptom (cancer) rather than the underlying systemic disorder. Nevertheless, only a small group of patients studied (8%) had refused to receive any conven­tional treatment, and 60% of patients who added unor­thodox regimens remained on conventional therapy as well. The notion of noncompliance, traditionally used to describe patients who fail to follow physicians' orders, does not accurately encompass the behavior of this pa­tient population. Most of these patients continue treat­ment as prescribed, and many physicians are supportive or neutral, if not actually involved, in today's alternative therapies.

Because most contemporary unorthodox practices seek to correct or prevent underlying systemic deficiencies, pa­tients with cancer represent only a segment of their clien­tele. Patients with diabetes, arthritis, neurologic degener­ative disorders, and other chronic illnesses, as well as healthy persons hoping to prevent disease, also use alter­native programs. Consequently, the health-care and eco­nomic implications of today's unorthodox therapies are vast.

This study shows that many patients receiving alterna­tive care do not conform to the traditional stereotype of poorly educated, terminally ill patients who have ex­hausted conventional treatment. Similarly, although some unorthodox practitioners may well fit the charac­teristic portrait of quacks and charlatans (3, 4, 28-30), many are well-trained, few charge high fees, and most, on the basis of patients' views and our own observations, sincerely believe in the efficacy and rationality of their work.

Contemporary alternatives, unlike the pills and potions of the past, are long-term, lifestyle-oriented options that exist within a broad view of health and personal responsibility. Patients welcome the self-care role and the con­comitant responsibility to attain health. However, it may be assumed that a burden of guilt is associated with the corollary responsibility for having caused their own dis­ease.

When patients move toward alternative treatments, they are simultaneously moving away from perceived de­ficiencies in conventional care. The quality of patients' relationships with their physicians was related inversely to their propensity to seek unorthodox care. Some of what unorthodox therapy has to offer is not available in the conventional context: simple explanations of the cause of disease based on common experience (eating, elimination, emotional and spiritual stress); remedies that are pleasant for the most part and that are usually free of physical side effects; and therapy based in the home rather than hospital.

Other features to which patients gravitate are avail­able, at least potentially, within the conventional treat­ment framework. These features include the opportunity for patients to participate actively in their own care; the inclusion of nutritional and dietary factors, which pa­tients read about in their daily newspapers; and the op­portunity for patients to develop a sustaining relationship with a primary physician whom they perceive to be caring and involved.

The emphasis of unorthodox therapy on nutrition, health as a personal responsibility, pollution, and purifi­cation has religious and moral overtones, but also repre­sents themes of great importance not only to patients, but to science and society as well. As such, unorthodox ther­apy is unlikely to be readily discarded.

ACKNOWLEDGMENTS: The authors thank the research assistants, primarily premedical and medical students, who conducted interviews with patients and who researched particular unorthodox therapies and groups: Stuart Berman. Lorraine Brown, Gene Caine, Glenn Currier, Dom Denigris, Marc Dickstein, Marci Epstein, Cindy Fader, Lon Fritz, Richard Flohr, Lynn Gildiner, Nancy Greces, Mark Hibberd, Jeffrey Isenberg, Marcia Mockler, Marion Michaels, David Miller, Carolyn Revercomb, David Sable, Sharon Silow, James Slater. Alan Tenaglia, Bruce Zangwill, and Lori Zuker­man, Clifford Miller and Juao Neves for computer programming; Susan Davis and Sheila Glover for manuscript preparation; and the many patients and practitioners of all persuasions who gave generously of their time and opinions.

Grant support: in part by grant CA31147 from the National Cancer Insti­tute, and by the W. W. Smith Charitable Trust.

4 Requests for reprints should be addressed to Barrie R. Cassileth, Ph.D.; Director, Psychosocial Programs. University of Pennsylvania Cancer Cen­ter. 7 Silverstein Pavilion, 3400 Spruce Street: Philadelphia, PA 19104.

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