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
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.
Under this heading comes a set of ideas and reflections that are less open to empiric verification but which, by their nature, may be closer to the elusive, irrational attraction of unproven therapies.
In order for unproven therapies to work, they need to remain unproven. Often practitioners of unproven therapies resist definitive randomized controlled trials, not only so that their theories will not be disproven but also so that they will not be proven. Unproven and pseudorational therapies intuitively address the emotive, irrational fears related to cancer and ill health in general. A thing unproven avoids the finality of proof or the hard truth of reality, and in a circuitous way, enables and encourages denial and other coping mechanisms.
In Illness as Metaphor, Sontag describes the myth surrounding cancer and tuberculosis-that certain mental states cause specific diseases. Thus, excessive emotionality results in tuberculosis, and emotional depletion predisposes to cancer. Myths arise in lieu of science and enable us to believe that we can master and predict the unknown. Myths and magic help us cope with our fears.
The fundamental focus of unproven therapies is not concentrated on repairing the flesh but rather on restoring the psyche. Hence, in spite of lack of proof, many people continue to use disproven and unproven therapies because these treatments help them feel better. The comparison to a system of belief is compelling.
In the introduction to this article, I suggested that the diagnosis of cancer unleashes the fear of death with an ensuing psychological need to repress this fear. Users of unproven therapies employ many techniques to quash that fear. I will discuss three psychological mechanisms whose fundamental purpose is to avoid this terror of death: magic and magical thinking, the heroic individual, and a delusional pattern of thought.
• Magic and Magical Thinking-One way of explaining the popularity and need for unproven therapies is to reinterpret them as atavistically driven forms of traditional magic. As Ehrenwald notes, “Magic is still part of our potential mental equipment, however rudimentary that may be.” Magic can be interpreted from two vantage points-anthropology and psychiatry.
The major anthropologic views have been expressed by Malinowski and Frazer.[19,20] Malinowski defines magic as ritual acts and beliefs designed to bridge gaps in reason and knowledge in order to deal with the ignorance of the surrounding world. This enables man to function despite anxiety, disaster, and death. The practical nature of magic “is to ritualize man’s optimism, to enhance his faith in the victory of hope over fear . . . confidence over doubt.”
Magic employs a specific spell or rite to induce a specific effect. Frazer described magic as a pseudoscience, since both magic and science strive to understand, explain, and then control the world with theories and techniques. The differences are telling. Science is founded on the conviction that experience, effort, and reason are valid; magic, on the belief that hope cannot fail nor desire deceive. In other words, magic mistakes a wished-for connection for a real cause and effect.
In his monumental work, The Golden Bough, Frazer classified magic as being either homeopathic (based on similarity) or contagious (based on contact). Both assume some secret force or “invisible ether” to explain the transmission of the desired effect or impulse.
Homeopathic magic uses the principle of “like producing like,” so that the practitioner can produce any effect he wants merely by imitating it. In Papua New Guinea, a hunter will take a dead snake, burn it, and smear his legs with the ashes to protect himself from snake bites in the forest. In India, a treatment for jaundice involves painting the patient yellow with turmeric, tying three yellow birds to his limbs, and looking into the eyes of the birds-the jaundice is thought to be drawn out of the patient’s body. Many agrarian societies sent fertile women to plant crops to ensure a bountiful harvest.
The concept of contagious magic holds that things, once in contact, continue to influence each other at a distance, even after the contact has been severed. There does not have to be any similarity or likeness between cause and effect. In Germany, preserving the umbilical cord or placenta traditionally ensures prosperity. Another German belief predicts that driving a nail into the footprint of an enemy will cause him to fall limp, especially if the nail was from a coffin.
Freud suggested that the two forms of magic described by Frazer both involve contact-either literal or metaphoric. He coined the expression “omnipotence of thoughts” to describe magical thinking. This is strikingly similar to Piaget’s preoperational stage of childhood development (ages 2–7), when magical thinking predominates and a child believes that his thoughts, words, or actions can cause or prevent events. For example, a child might think his angry thoughts caused a parent to fall sick. This is called phenomenalistic causality. Animistic thinking vivifies physical events or objects with feelings, intentions, or significance. A characteristic of magical thinking is that events are not linked or limited by logic or fact.
Many unproven therapies exhibit thought patterns analogous to magic. Pseudotheories or unprovable explanations of unproven therapies, as in magic, are characteristic. For example, shark cartilage is used with the rationale that sharks do not get cancer because their cartilaginous skeleton stops blood vessel growth. Thus, by consuming shark cartilage, humans will be similarly protected. In much the same way, immunoaugmentative therapy uses blood products to influence the body’s natural immune system. Like influences like. Natural food diets, assumed to be healthy, will restore health. Many unproven therapies rely on unspecified, unmeasurable forces that, while not subject to empiric verification, can influence and repair physical illness. Examples include mind-body techniques, such as the Simontons’ guided imagery methods and the “energy field” manipulations associated with Therapeutic Touch.
Yalom gives another psychological view: The role of magic is to allow one to transcend the laws of nature, to transcend the ordinary, to deny one’s creaturely identity-an identity that condemns one to biological death. In this sense, magic might be used in a creative way, as are myths, fables, and paintings. Like magic, unproven therapies fulfill the function of resolving and accepting the inexplicable and painful. This returns us to our original premise that fear of death is a prime force driving the use of unproven therapies and magic, and that unproven therapies are designed, albeit unconsciously, to relieve the anxiety associated with cancer.
The concept of magic, however, does not explain everything.
• The Heroic Individual-Both Doan and Holland suggest the notion of heroism as a mechanism for resolving angst. Doan notes that the lay press is filled with stories about individuals beating or battling cancer in heroic against-the-odds ways. Furthermore, the metaphoric language used in treating cancer-battle, victory, fighting-spirit-is frequently that of war, emphasizing the myth of the war hero. In most societies, war heroes are offered the highest accolades and finest monuments. In this sense, we see the value of unproven therapies remaining unproven (success despite contrary advice and statistics) and emanating from the counterculture (making the victory all the more impressive).
Doan suggests that a heroic stance can foster a sense of control and provide positive meaning in life. Being a hero (in war, sport, or health) furnishes an awareness of uniqueness and differentiation-effective antidotes to the loneliness and helplessness that characterize the threat of death. Conversely, he points out that some patients are pushed into a heroic posture contrary to their character by family, friend, or even self, only to feel guilt or shame at not succeeding. The oncologist must be aware of such situations and intervene as appropriate.
Doctors themselves are prime candidates for adopting the heroic posture-with white-coat battlefield uniforms-in their own struggle against failure, personal terror of death, and sense of worthlessness. One reason oncologists react vehemently to patients suggesting the use of unproven therapies is the implication that they will not only be replaced but revoked, no longer the hero in white. An awareness of such issues will protect against irrational decision-making, including the compulsive counterphobic need to treat.
Yalom also notes the existence of a sense of personal specialness that permits us to tolerate isolation. The knowledge of death, like isolation, is alleviated by adopting a heroic posture and developing a resilient sense of uniqueness.
• Delusional Thinking-Does the use of unproven therapies constitute a delusional thought system? Are purveyors and purchasers deluded in thinking that unproven therapies, such as crystal balls and force fields, can alter the genetically driven function of malignant cells? Is prayer a delusion?
A delusion is a pattern of thinking that reflects a fixed, false belief based on incorrect inferences about external reality; such thinking is not consistent with cultural background and cannot be corrected by reasoning.[22,25] In this discussion, we exclude “organic” delusions due to schizophrenia, drugs, and medical disorders, such as delirium. The majority of conventional medical practitioners think patients are deluding themselves by believing that unproven therapies can alter the course of cancer. Although this lay use of the word “delude” does not necessarily translate into a psychiatric diagnosis, it nevertheless is highly suggestive of one.
The pathogenesis of delusional thinking is not clear.[25,26] Most authors acknowledge a mixture of genetic, cognitive, and psychological factors. The major postulated psychological influences are that delusions arise as “reaction formation, wish-fulfillment, denial, or projection.” Thus, delusions alleviate anxieties by altering the perception of reality. Yalom goes further: “if an astrological or shamanistic or a magical explanation enhances one’s sense of mastery and leads to inner personal change, then it is valid (keeping in mind the proviso that it must be consonant with one’s frame of reference).”
As Yalom emphasizes, cultural context is critical and definitions of what is and is not acceptable are relative. In other words, does the belief that consuming shark cartilage stops cancer cells from replicating, or that coffee enemas remove cancer-causing toxins from the body, constitute a cultural transgression? Does a cognitively intact person who uses an unproven therapy to the point of self-harm remain within the realm of cultural compliance?
Western society is generally tolerant of unproven therapies. Thus, consuming shark cartilage is sufficiently accepted or forgiven so that it is not perceived as a delusion. Similarly, prayer for health to an unseen god, although unprovable, is culturally acceptable. Furthermore, the practitioners and users of unproven therapies generally stay within the law, both legal and psychological. Hence, societal tolerance prevails, and the threshold for a diagnosis of psychopathologic delusion is mostly not breached.
Cancer’s very biology stems from a loss of control-rampant multiplication and uncontrolled growth, the body out of control and turning on itself. Control is life, loss of control is death. That is why we so fear cancer. Our psyches and souls shudder at losing control; hence, the tenacious fight to stay in control, to live. In trying to synthesize an overall psychological description explaining the popularity of unproven therapies, we could describe patients as seeking means and methods to regain an internal locus of control in their lives.
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 these therapies, to analyze our own behavior, and to conclude what, if anything, our response should be.
A paradox facing oncologists today is the emphasis on patient autonomy. Autonomy in cancer forces patients to make decisions of profound consequence in situations of significant uncertainty. Part of the truthfulness of informed consent is exposition of the physician’s ignorance. We do not know why this cancer developed. We do not know whether we can cure the disease. We do not know how long the patient will live, although we can provide statistics and probabilities.
Patients often interpret our honest percentages as loss of hope, and into this hiatus come practitioners of unproven therapies. They provide hope via pseudoscientific theories (analogous to traditional magic) that explain why the cancer occurred, thus making order out of existential chaos. Hope is an elixir of denial against the fear of death. It provides a matrix for mobilizing the fighting spirit. Analogously, the paternalistic approach has the distinct advantage of providing hope and security, albeit as a simplistic paradigm, against the darkness of death hovering.
In light of this, we may wonder why many oncologists become antagonistic at the mention of unproven therapies and their practitioners. There are several factors that may be involved:
• First, unproven therapies challenge the deeply valued belief system of the scientific world won at great expense against the forces of ignorance. There is something fearful and threatening about irrational beliefs.
• The second factor derives from the general instinct that anything different from “myself” is a potential threat.
• The third rationale relates to the issue of money and competition in the marketplace.
• Fourth, oncologists may become angry when they see people for whom they care and struggle being cheated and defrauded.
• Fifth, unproven therapies raise questions in the physician’s mind: Is there something wrong with my approach as a doctor? Am I failing my patient?
• Sixth, the oncologist is being rejected on a personal level, which always hurts, no matter how much rationalization is bandied about.
• Finally, the physician is dethroned from the status of medical hero.
In practical terms, it is critically important for oncologists to speak with their patients about the use of unproven therapies.[15,28-32] It is necessary to ask directly about it and to secure the patient’s confidence, since many patients are reticent to inform their oncologists that they use unproven therapies, for fear of rejection and reprobation. As noted earlier, studies vary greatly in their findings. However, between 30% and 72% of patients do not tell their oncologists that they are using unproven therapies. Patients must be asked in a nonjudgmental manner, or else trust and communication will swiftly dry up.
A recent study documented another reason for asking about the use of unproven therapy. Burstein and colleagues looked at how psychological and physical factors influenced the use of unproven therapies in early-stage breast cancer. They found that initiation of unproven therapy after surgery was associated with a worse quality of life characterized by depression, fear of recurrence, decreased sexual satisfaction, and more physical symptoms.
Downer and coworkers found in their survey that patients using unproven therapies scored a higher level of anxiety on the Hospital Anxiety and Depression Scale. It appears that many patients turn to unproven therapies for relief of distress, particularly psychological distress. Therefore, Holland noted, when patients reveal their use of unproven therapies, the follow-up question should address how they are coping with the illness, especially in terms of anxiety and depression. Referral to a psycho-oncology service might be considered next.
The popularity of unproven therapies can be viewed as “a biting criticism of mainstream medicine that ought to be taken seriously.” Many authors show concern about the lack of bedside manners among conventional physicians.[11,37] Ernst compared the bedside manner of general medical practitioners and unproven therapy practitioners and found patients favored the greater time spent and information given by unproven therapy practitioners. Other authors have noted the loss of bedside skills, the fragmentation due to specialization, and the importance of maintaining hope, as factors in patients preferring unproven therapy practitioners.
Moreover, it is critically important that oncologists do not irrevocably cut patients off from contact or follow-up even if they do elect unproven therapy. The door must always be left open for them to return with pride intact. Ours is to treat, not to judge.
Conversely, the oncologist must be informed about the various unproven therapies, particularly local trends, must be able to engage in informed discussions with the patient, and should even be prepared to assist patients in seeking information. Frequently, patients are simply curious, and it is often sufficient to inform them that these therapies are unproven, while outlining the risks and benefits.
It is also useful to explain why unproven therapy is popular and discuss the myths and proven failures. We should emphasize to patients that any medicine-whether “natural” or “drug”-should be understood in terms of its potential benefit and harm. At other times, patients themselves are not demanding the use of unproven therapies, but rather, a relative or friend is coercing them to do so.
Oncologists should be wary of a smug self-righteous attitude and acknowledge the use of unproven therapies in limited circumstances. Unproven therapies may be effective in maintaining a positive, fighting spirit, which has been shown to improve emotional well-being. Magical thinking and practice, in appropriate doses and circumstances, may be a creative and effective attempt to cope with and explain the world around us.
Furthermore, it is the right of the patient, if competent and fully informed, to freely choose a form of therapy. Just as Jehovah’s Witnesses may refuse blood-transfusion on the grounds of their beliefs (supported by law), even with fatal consequences, so may cancer patients chose unproven therapies, even at risk of self-harm.
On the other hand, to tolerate does not mean to encourage or to acknowledge as morally or scientifically equivalent. Hence, we are obligated to inform patients of our viewpoint, especially if there is evidence of psychological, physical, or financial harm. Clearly, we would like to believe that the skills and resources of a comprehensive cancer department replete with psychological, behavioral, and clerical support would be adequate to manage psychological distress and preclude the need to seek relief with unproven therapies.
Psycho-oncology has built up tremendous experience in recent decades, not only in controlling psychological symptoms, but also in guiding the patient to a deeper understanding of existential issues and encouraging personal growth. Practitioners of unproven therapies are generally neither skilled nor attuned to this potential.
Perspective, however, is important. Unproven therapies have been in use since the dawn of medical history, and the reasons for their use as outlined above are both straightforward and complex. The medical profession must research not just the scientific side of unproven therapies but also the psychological, sociological, ethical, and philosophical aspects. Use of unproven therapies will not disappear.
When treating patients with advanced cancer, physicians must communicate hope, care, and comfort within limited goals of care. Unproven therapy is popular in patients with cancer because it generates hope, however transient or false. Cassileth is correct when she notes that there are no unproven treatments for universally curable diseases. Awareness of death and its attendant fears is an incurable condition that is ripe for many kinds of unproven remedies.
Unproven therapies do not translate into better survival or improved quality of life. In fact, the opposite has been shown to be true. The challenge to oncologists is to understand and tolerate unproven therapies to the best of our patients’ interests. We are challenged not to exacerbate the dichotomy, but we must not compromise our belief in science and its culture.
Angell and Kassirer concluded in a New England Journal of Medicine editorial: “There cannot be two kinds of medicine-conventional and alternative. There is only medicine that has been adequately tested and medicine that has not, medicine that works and medicine that may or may not work. Once a treatment has been tested rigorously, it no longer matters whether it was considered alternative at the outset. If it is found to be reasonably safe and effective, it will be accepted.”
The oncologist’s practical response is not only at the bedside. The physician should aim to educate the family and society at large, to undertake research of unproven therapies, to uphold our scientific tradition, and to support government legislation protecting the unwary from the unscrupulous.
The complex fears and needs of cancer patients and their families with cancer demand a multidisciplinary approach. The oncologist pressed for time should involve psycho-oncologists and palliative-care experts as early as appropriate. Managing the patient as a whole, physically and psychologically, has always been a strong tradition in conventional medicine, from Hippocrates through Maimonides, to Lister and Osler.
Lister said there was only one good rule of medicine and that was to put yourself, the doctor, in the shoes of the patient. Osler taught, “it is not what sort of disease the patient has, but what sort of patient has the disease.” If physicians keep these guidelines in mind, unfulfilled needs might be addressed and the motivation to use unproven therapies might diminish.
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