ABSTRACT: Commonly used by cancer patients, unproven therapies are treatments that the practitioner claims can alter the disease process although there is no proof to support the claim. The reasons for the popularity of uproven therapies fall into two categories—practical considerations and fundamental mechanisms. Research has implicated the following practical factors: a pragmatic search for relief of symptoms, expression of a philosophical view, a need to reestablish a sense of control in life, and dissatisfaction with conventional medicine. Fundamental mechanisms include traditional magic, the heroic individual, and a delusional pattern of thinking. Underpinning and generating these factors is the fear of death. Particularly in patients with cancer, this is not only a fear of nonexistence, but of loneliness, the unknown, pain, loss of control, and emptiness. The popularity of unproven therapies poses a challenge to the medical system at large, and oncologists, psycho-oncologists, and palliative-care physicians, in particular. The essence of the challenge is to understand the reasons for the use of unproven therapies, to analyze our own behavior, and conclude what if anything our response should be. Unproven therapies (as with magic, a sense of heroism, and delusional thinking) fulfill the function of resolving the inexplicable and the psychologically painful—ie, relieving the anxiety associated with cancer. [ONCOLOGY 14(9):1345-1350, 2000]
Credulity, as a mental and moral phenomenon, manifests itself in widely different ways, according as it chances to be—the daughter of fancy or terror.
—James Russell Lowell, Witchcraft, 1871
Fear of death is a primary human emotion. It is nowhere more evident than in patients with cancer. This encompasses not only the fear of nonexistence, but of loneliness, the unknown, pain, loss of control, and emptiness. These sound like vague concepts until one is challenged by a patient, or is oneself in such a predicament. Becker minces no words: “The idea of death, or the fear of it, haunts the human animal like nothing else; it is the mainspring of human activity—activity designed largely to avoid the fatality of death.”
The word cancer generates such fears, like the words plague and tuberculosis once did. As Becker implies, we repress our awareness of death most of the time. With the diagnosis of cancer, however, the fear of death resurfaces in many, if not, most patients. The human psyche responds with a variety of defense and coping mechanisms to resuppress and psychologically “avoid the fatality of death.”
A popular social movement sweeping the world today is a poorly categorized set of behaviors and beliefs that fall under the rubric of complementary, or alternative, medicine. I, however, shall employ the utilitarian title of unproven therapies. It is my contention that the use of unproven therapies is a mechanism to deal with the fear of death—in particular, where associated with cancer.
Is the burgeoning use of unproven therapies a problem? Are there broader societal implications in the retreat from objective, rational thought in favor of irrational unproven therapies? Why do patients choose unproven therapies against the evidence? How should the patient and the practitioner of unproven therapies be approached? Is there something that we in the medical community are doing wrong? What is the impact on the oncology community?
In seeking to understand this phenomenon, it is instructive to put the use of these therapies into historical context. There have always been nostrums and folk remedies to heal the sick. Happle suggests that “alternative medicine represents the most ancient form of medicine and will continue to exist [and] meet the need of many people seeking some metaphysical bonds and a simple explanation of complex or inexplicable matters.”
Numerous authors note that changes in the form and format of folk medicine are inextricably linked to the ambient culture, social charter, and current scientific trend.[3,4] Balms, potions, and lotions prescribed by witch doctors, magicians, and shamans were de rigueur before the advent of science and have been reinvented by like-minded folk to fit contemporary theories. Motivation, though, has remained unaltered.
There has been an attempt to bring order to a complex taxonomic problem by incorporating unproven therapies under the umbrella term “complementary-alternative medicine.” This is not helpful.
Promoters of this terminology draw a distinction between alternative and complementary. Complementary is defined as therapies used in addition to conventional treatment. The aim of complementary therapy is to help patients cope with having cancer rather than influence the cancer process itself. Alternative therapy, on the other hand, refers to treatments that are purported to have an impact on cancer physiology, and even effect a cure.
This distinction is ambiguous, cumbersome, and taxonomically bewildering, largely because of significant overlap between the treatments in each group. The classic example is that some unproven therapy practitioners use meditation or mental imagery with the aim of reversing the disease process (unproven, alternative), whereas others might claim the same treatment as an aid to relaxation (proven, complementary).
Another grey area is that of life-style practices that include systems of belief. For example, how should we categorize massage, music therapy, tai chi, yoga, or prayer? All these practices help maintain a “good” feeling through complex cognitive-behavioral mechanisms. To classify these life-style choices as complementary-alternative medicine seems to be inexpedient and taxonomically nihilistic.
In my view, the definition of unproven therapies in cancer should be based on two essential criteria: First, the practitioner claims that the treatment can alter the disease process. Second, this claim has not been verified by accredited government organizations or evaluated by a peer-reviewed medical journal. Other possible features include an unwillingness to submit to randomized controlled clinical trials, an irrational theoretical basis, and the placebo effect as the sole pathogenic mechanism. Unproven therapies would also include disproven treatments, that is, treatments that have been subjected to peer-reviewed controlled studies and have been found to be ineffective.
Some authors prefer not to use the phrase unproven therapies since there are treatments in conventional medicine that have not been confirmed by evidenced-based studies. Be that as it may, there is a willingness to investigate such treatments in the spirit of rational science and to discard them if inappropriate. Evidence-based medicine is littered with such corpses. The American Cancer Society calls unproven therapies questionable methods and defines them as life-style practices, clinical tests, or therapeutic modalities that are promoted for the prevention, diagnosis, or treatment of cancer, and that are, on the basis of careful review by scientists and/or clinicians, deemed to have no real value.
In order to appropriately respond to the phenomenon of unproven therapies, it is important to understand the motives and rationale for their use. A number of important studies have been conducted in recent years exploring practical reasons. However, fewer articles have looked at the more fundamental motives driving patients to seek unproven and irrational treatment.
Several studies have tried to dissect the reasons that people use unproven therapies. Astin surveyed the general population (not just cancer patients) and found that users were more likely (1) to hold a holistic philosophy of life, ie, a belief in the importance of the body-mind-spirit interrelationship in health; (2) to suffer from anxiety and chronic pain; and (3) to belong to a cultural group that identified with environmentalism, feminism, spirituality, and personal-growth psychology. However, he found that dissatisfaction with conventional medicine was not a factor.
Burstein’s study of early-stage breast cancer patients identified a strong association between the use of unproven therapies and anxiety, depression, and physical symptoms. Downer’s group studied unselected oncology patients and found dissatisfaction with conventional treatment to be the result of side effects, loss of hope, and greater anxiety. A German group looking at oncology outpatients found that most patients used unproven therapies to “build up resistance,” in conjunction with a philosophical bent to greater religious belief and concern about ecology. Less than 5% of users did so because of lack of confidence in, or failure of, conventional medicine.
Risberg studied 630 cancer patients and found that users of unproven therapies had received a less hopeful prognosis than nonusers. Most employed unproven therapies in order to increase strength, relieve symptoms, and fight the adverse effects of treatment, with less than 10% using them for cure alone. Oneschuk surveyed 143 advanced cancer patients and found that the primary reasons for their use of unproven therapies were well-being (35%) and anticancer effect (50%). Danielson and Cassileth described the prevalent attitude as being “nothing to lose.” Cancer patients are desperate, and practitioners of unproven therapies promise natural, side-effect–free treatment with better survival results.
In summary, most researchers found that the practical reasons that patients use unproven therapies are that they seek hope, want to be treated as a “whole person,” need to express a philosophical view, are conducting a pragmatic search for relief of symptoms (both physical and psychological), and desire a sense of reestablishing control in their lives. To a lesser extent, dissatisfaction with conventional treatment was noted to be a factor.
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