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Truth and Truth Telling in Integrative Oncology

ANTONELLA SURBONE

KEY POINTS

The patient–doctor relationship is a therapeutic alliance in which the two partners are bound by justice and trust in a mutual, goal-oriented relationship of help between one partner who is in need of expertise and care and another who can provide these.

The patient–doctor relationship has an intrinsic asymmetry, which is increased by the vulnerability that the illness induces in the patient and by the power imbalance between the two partners. As a consequence, the relationship cannot be simply described in contractual terms, as it involves the dimensions of care and trust.

The notion of individual autonomy is now replaced by that of relational autonomy, which takes into account our being embedded in a relational context that sustains us through our life, while creating reciprocal responsibilities.

The patient–doctor relationship extends to the family, the community, the medical institutions, and society and it is made possible by effective communication among all partners involved.

Truth telling is an essential step in the patient–doctor–society relationship and information should ideally be ongoing, accurate, and complete. Communication, however, goes beyond information and is an open-ended multidirectional process that takes place in specific cultural contexts.

Style, setting, content, and supportive aspects of communication of truth to patients influence each other reciprocally and need to be properly balanced, according to the patients’ individual and cultural preferences and contexts.

Cancer patients increasingly look for alternative ways to control their cancer and contribute to their own well-being for different reasons. These include dissatisfaction with the quality of the patient–doctor relationship and of the traditional communication process.

Cancer patients and their oncologists should share in searching for the truth of the illness in a binding relation that is especially strong when the two parties engage in the project of integrated oncology.

The patient–doctor relationship is a therapeutic alliance in which the two partners are bound by justice and trust in a goal-oriented, mutual, yet asymmetric, relationship of help between one partner who is in need of expertise and care and another who can provide these. The essence of the partnership between patient and doctor lies in this asymmetry of help, which is increased by the vulnerability induced in the patient by her illness (Surbone & Lowenstein, 2003a). The vulnerability of the ill person enhances her dependence on other persons, and especially on the physician. The patient–doctor relationship was traditionally centered on charismatic physicians who made what they considered to be the best medical choices in their patients’ interests and provided or withheld information at their discretion. In contemporary Western societies, physicians are now considered equal partners with their patients and they tell the truth to their patients to enable them to exercise autonomy in making decisions about health matters. The patient–doctor relationship, however, is a special type of partnership, where the rules of reciprocity suited for voluntarily bargaining between nonintimate equals are not sufficient. This special connection of reciprocity cannot be described in simple contractual terms. It is, rather, a covenant marked by the qualities of care, trust, and sensitivity (Pellegrino & Thomasma, 1988). Asymmetry and vulnerability are magnified in the relationship between cancer patients and their oncologists because of the serious nature of cancer with its medical, psychological, and social ramifications, the complexity and potential risks of cancer treatments, and the fragmentation of care for patients who need to be followed by multiple specialists (Surbone, 2006a).

The person experiencing symptoms and signs of an illness consults a fellow human being as a professional expert to help her in decoding and interpreting her suffering (Galeazzi, 1997; Surbone, 2000). Each patients’ suffering is always qualitatively and quantitatively unique and physicians interpret it through the application and instantiation of their knowledge and practical wisdom in the context of compassion and empathy. The physician establishes the diagnosis, formulates the prognosis, and prescribes the appropriate treatment measures in view of a therapeutic goal that must be common to the patient and the physician and, in industrialized societies, must be agreed on by both. In the patient–doctor relationship, the cognitive and caring dimensions of the physicians’ work are equally important (Clifton-Soderstrom, 2003; Surbone, 2000). Style, setting, content, and supportive aspects of communication of truth to patients influence each other reciprocally and need to be properly balanced, according to the patients’ individual and cultural preferences and contexts (Surbone, 2006b). Whether content and facilitation of the communication process are as important to patients as the supportive dimension of communication likely depends on individual and cultural factors, including gender, age, and education. Oncologists and institutions have greatly improved in their sensitivity and adapt their manner and style, and sometimes even the care setting to enhance effective communication.

Today, for example, patients and relatives are no longer spoken to in a hallway or during medical rounds with no privacy, representing a major improvement in communication. On the contrary, patients are now asked to comment on the quality of the communication process, and the literature shows that they are more satisfied when their oncologists provide accurate and complete information in a clear understandable language and when they show genuine understanding of their feelings. Basic empathic skills for meaningful communication in the clinical setting involve physicians’ recognition of patients’ emotions, even when they do not verbalize them, and inviting patients to explore and share unexpressed feelings. Only when patients feel understood does the communication process reach its full effectiveness (Maguire, Faulkner, Booth, Elliott, & Hillier, 1996; Matthews, Suchman, & Branch, 1993).

Cancer patients wish to be provided not only with information about diagnosis but also about therapies and their possible benefits and side effects, about ongoing research and new experimental treatments and, to a lesser degree, about prognosis and expected outcomes. Patients and physicians must reconcile their needs for accurate detailed information with the medical uncertainty that still surrounds the clinical practice of oncology. Uncertainty in medicine makes everyone uncomfortable (Schapira, 2006). It is hard for patients to accept that the doctors they entrust their bodies and lives to may, in fact, provide treatment to them under conditions of high uncertainty. Physicians highly value the objectivity and certainty of medical knowledge and they fear that admitting uncertainty may undermine their authority and power. Some oncologists overwhelm their patients with information expressed in numerical terms, perhaps as a way to underline known elements of certainty while avoiding those aspects of their patients’ cancer that involve uncertainty (Surbone, 2006a). Some oncologists feel especially uncomfortable providing prognostic information to their patients, as being truthful and admitting uncertainty may seem to conflict with maintaining hope in their patients (DelVecchio Good, Good, Schaffer, & Lind, 1990; Kodish & Post, 1995). While it is possible for oncologists to be frank and at the same time to inspire hope, the issue of whether, to what extent, and how to disclose prognosis and to deliver “bad news” is still highly debated, even in those countries with a long tradition of truth (Baile, Lenzi, Parker, Buckman, & Cohen, 2002; Butow, Maclean, Dunn, Tatterstall, & Boyer, 1997; Hagerty, Butow, Ellis, Dimitry, & Tattersall, 2005; Husebo, 1997; Parker, Baile, deMoor, Lenzi, Kudelka, & Cohen, 2001; Weeks, et al., 1998).

Many cancer patients, confronted by high degrees of uncertainty regarding the cancer prognosis and the outcome and potential side effects of both standard and experimental cancer therapies, choose to go beyond traditional medical care and look for alternative ways to control their cancer and contribute to their own well-being. Those patients who use alternative therapies generally do so in addition to conventional treatment, but some rely on non-traditional treatment alone (Balneaves, Truant, Kelly, Verhoef, & Davidson, 2007; Cassileth, 2001; Eisenberg, et al., 1993; Ernst & Cassileth, 1998; Goldstein, et al., 2005; Harvey, Bauer-Wu, Ria, Laizner, & Post-White, 2005; Kelly, 2007; Kessler, et al., 2001; Molassiotis, et al., 2005; Shumay, Maskarinec, Karm, Kakai, & Gotay, 2003). It has now become essential for all oncologists to understand the motivations of those patients who continue active treatment or follow-up, while also using complementary therapies, and to be able to communicate with them in a spirit of honesty and truthfulness. Oncologists should be sensitive to mind and body interactions, as well as to all physical, emotional, and spiritual aspects involved in cancer care, and acquire sufficient knowledge of integrative medicine to “sort out all the evidence about healing systems and to try to extract those ideas and practices that are useful, safe, and cost-effective” (Weil, 2000).

We tell the truth to respect our patients’ capability to comprehend elaborate information about their illness and to make autonomous decisions in healthcare matters. We also tell the truth, in medicine and in life, because by doing so, we create valid long-lasting interpersonal relationships. Finally, truth has an intrinsic spiritual value in helping us make sense of what happens in our lives.

Truth Telling in Integrative Oncology

The motivations for the growing interest of cancer patients in integrative strategies are mainly related to the patients’ desire to assist their body’s healing by improving their physical and psychological well-being, and to maintain their hope by increasing control over their illness (Balneaves, Truant, Kelly, Verhoef, & Davidson, 2007; Ernst, Pittler, Wider, & Boddy, 2007; Maizes, Schneider, Bell, & Weil, 2002; Molassiotis, et al., 2005). Cancer patients also wish to be empowered in their interactions with oncology professionals who, in addition to their expertise in cancer treatment, should be aware of the importance of lifestyle factors, including nutrition, exercise, sleep and relaxation, as well as of the many spiritual dimensions of healing (Rees & Weil, 2001). Cancer patients and their families and care givers in Western countries are generally aware of the current limitations of traditional cancer therapies, and they are mostly dissatisfied with the quality of their patient–doctor relationships, too often permeated by medical arrogance.

Dissatisfaction with the communication skills of physicians and a sense of not being given adequate or useful information is an additional factor that draws cancer patients toward alternative treatments (Ernst, 2002). The traditional Western method of communicating bad news can be either too blunt or too paternalistic, and both attitudes can be perceived as arrogant and dogmatic by cancer patients, who may turn to alternative treatments that are more uncertain and yet seem to empower them with a greater sense of control and hope (Abrams, 2007; Balneaves, Kristjanosn, & Tatryn, 1999). It has also been hypothesized that patients who make use of complementary interventions may be more pessimistic about their prognosis or more emotionally and psychologically distressed than those who do not seek alternative ways to help themselves (Hlubocky, Ratain, & Daugherty, 2007). Other data indicate that the use of complementary medicine is higher in younger, well-educated female patients and may correlate with a preference for patient-centered, rather than shared, decision making about health matters (Cassileth, et al., 1991; Eisenberg, et al., 1993; Hlubocky, et al., 2007; Paltiel, et al., 2001). Multiple factors thus contribute to the individual cancer patients’ choice to investigate and pursue different forms of interventions to improve her chances of survival and her quality of life (Lawsin, et al., 2007; Lis, Cambron, Grutsch, Granick, & Gutpa, 2006; Molassiotis, et al., 2005). Integrative oncology was born in response to the need to understand, respect, and foster a more wholistic approach to cancer patients (Abrams, 2007; Cassileth, et al., 1991; Kessler, et al., 2001; Maizes, Schneider, Bell, & Weil, 2002; Ruggie, 2004; Yates, et al., 1993).

Integrative oncology aims at the thoughtful and rational combination of conventional and complementary therapies for cancer. Integrative oncology involves combining the use of different evidence-based treatments with attention to other dimensions of health and healing for the whole person (Abrams, 2007; Ernst, 2002; Ernst, et al., 1995; Meyers & Jacobsen, 2005; Rees & Weil, 2001). To deliver sensitive and effective care, all oncologists determined to work within the integrative oncology perspective must acquire and communicate knowledge about a holistic approach to cancer that goes beyond traditional standard or experimental oncology. The questions of what the truth is and how we tell it can be even more challenging in integrative oncology than in tra ditional clinical oncology (Lazar & O’Connor, 1997). Traditional medicine adopts a biomedical approach toward illness based on an analytical view that focuses on the objective aspects of the disease. By contrast, the integrative approach considers the individual person’s health in the interconnectedness of his or her body, mind, and spirit. In the integrative perspective, the physician addresses the patients’ many concerns and many “truths,” not all easily quantifiable, to strengthen the ill person as a whole. The integrative perspective requires the physicians’ understanding of the place of the conventional therapies as part of a larger treatment strategy that involves physical and spiritual changes in the patients’ life and lifestyle (Abrams, 2007; Hamilton, 1998; Tatsumura, Maskarinec, Shumay, & Kakai, 2003; Weil, 2000). At the same time, the patient and the doctor realize that the holistic approach of integrative medicine does not exclude the more analytic approach of conventional treatments.

In the integrative perspective, most patients assume direct responsibility for their well-being and involve themselves very actively in their care. Some physicians may see this as destabilizing their role and undermining their authority. Oncologists may feel challenged by patients who explore or choose complementary treatments with which physicians are generally unfamiliar (American Society of Clinical Oncology, 1998; Kemper, Gardiner, Gobble, & Woods, 2006). Being asked about the use of interventions that are still considered unproven and that are not the subject of formal teaching during medical school and specialty training can make physicians feel uncomfortable and unwilling to share information with their patients. Many oncologists do not ask patients about whether they use or would like to use complementary interventions, and many patients do not raise the issue in order not to upset, or even lose, their doctors (Hann, Baker, & Denniston, 2003; Roberts, et al., 2005). In some cases, physicians inquire about complementary interventions because they worry about possible direct harm or interactions with standard or experimental cancer treatments (Bardia, Barton, Propork, Bauer, & Moynihan, 2006; Crocetti, et al., 1998; Hlubocky, et al., 2007; Institute of Medicine at National Academy of Sciences, 2005). While this is a legitimate concern, clinical experience shows that it is not uncommon for oncologists to approach their patients hesitantly or in a more or less subtle judgmental way, and it is equally not uncommon for patients to lie to their oncologists. Studies suggest that patients with preferences for shared decision making are more likely to tell their doctors that they are using complementary interventions, yet not all oncologists encourage shared decision making in their clinics (Hlubocky, et al., 2007; Paltiel, et al., 2001; Roberts, et al., 2005). Integrative oncology first and foremost requires reciprocal honesty and sincerity between cancer patients and their oncologists (Hann, et al., 2003; Jankovic, et al., 2004; Roberts, et al., 2005).

Integrative oncology is the thoughtful and rational combination of conventional and complementary therapies for cancer with attention to other dimensions of health and healing for the whole person. Integrative oncology acknowledges the connections between mind and body, and between health and life styles, as well as the spiritual dimensions of healing. A holistic approach to cancer patients also requires to consider them within their relational and social context.

Telling Truth to Cancer Patients: Cross-Cultural Similarities and Differences

In most countries, the public, physicians, and ethicists agree that an appropriate level of information is necessary to foster cancer patients’ understanding of their illness and their involvement in the decision-making process (Beauchamp & Childress, 1994). Information enhances patients’ cooperation with standard oncologic treatments and experimental therapies and leads to higher quality of care and better quality of life (Fallowfield & Jenkins, 2004). Furthermore, according to recent empirical research, cancer patients’ needs and preferences regarding communication of bad news are similar across cultures (Baile, et al., 2002; Chiu, et al., 2006; Surbone, 2006b). Modern attitudes and practices of truth telling to cancer patients, however, have evolved over long periods of time and are still uncommon in many nonindustrialized countries. The international literature confirms that cultural barriers to open communication still exist and need to be acknowledged (Kagawa-Singer & Blackhall, 2001; Koenig & Gates-Williams, 1995; Mystadikou, Parpa, Tsilika, Katsouda & Lambros, 2004; Surbone, 2006c).

Under the influence of many intertwined medical, legal, and societal factors, a drastic evolution of truth-telling attitudes and practices in oncology took place between the early 1960s and the late 1970s (Annas, 1994; Novack, et al., 1979; Oken, 1961). In the 1980s and early 1990s, the first reports of different truth-telling attitudes and practices worldwide were published in the international medical and bioethics literature, and major cross-cultural differences were described. These could be explained in view of the delicate balance between autonomy and beneficence in clinical medicine (Gostin, 1995; Pellegrino, 1992; Surbone, 1992; Tuckett, 2004). Unlike Anglo-American societies that privileged the notion of individual autonomy and the consequent right to self-determination of any patient with respect to health-care matters, many countries with strong traditions of family- and community-centered values held a more paternalistic view of the patient–doctor relationship and assigned to families and physicians a protective role toward the ill (Gordon & Paci, 1997). The word “autonomy,” rather than being synonymous with “freedom,” was synonymous with “isolation” in these countries (Surbone, 1992). Cancer patients were deemed unable to endure the psychological stress of knowing their diagnosis and prognosis and painful medical truths were withheld or strongly mitigated. While patients were kept in the dark, physicians gave information to and discussed treatment options and prognosis with family members. As a consequence, patients were caught in a web of half-truths that silenced their voices and, rather than protecting and sustaining them, in most cases subjected them to further isolation and suffering (Surbone, 1993).

A pattern of evolution similar to the one seen in the United States could be identified in several non-Western countries at the end of the 1980s. Since the mid-1990s there has been a remarkable shift in truth-telling attitudes and practices worldwide, and empirical and theoretical studies on truth telling to cancer patients and on delivering bad news have been published in the oncology, nursing, and psycho-oncology international literature (Dalla Vorgia, et al., 1992; Espinosa, Gonzales Baron, Poveda, Ordonez, & Zamora, 1993; Hamadeh & Abid, 1998; Harrison, et al., 1997; Holland, 1987; Mystadikou, 2005; Ozdogan, et al., 2004, Surbone, 2004a; Surbone & Zwitter, 1997; Tanida, 1994; Weil, Smith, & Khayat, 1994; Williams & Zwitter, 1994). Despite this international trend toward disclosure of information to cancer patients, however, partial or non-disclosure is still common practice in many cultures centered on family and community values (Surbone, Ritossa, & Spagnolo, 2004b). For example, while Italian medical deontology and the law on informed consent have evolved dramatically in the past 10 years, the general level of a patients’ awareness of diagnosis and prognosis is still limited. A 2000 survey of 675 northern Italian physicians that asked whether, and to what extent, patients were informed of a cancer diagnosis revealed a major discrepancy between physicians’ reported views on truth telling and what they had actually done in their practices. One-third of Italian physicians believed that patients never want to know the truth. Forty-five of the physicians indicated that patients should always be informed of a cancer diagnosis, while only 25% said they always disclosed the diagnosis in practice (Grassi, et al., 2000). In Japan, 46% of the general population in 2000 asserted that family should have a protective role in shielding the patient from a painful diagnosis, and several studies report that most Japanese physicians still consult with the family before disclosing a cancer diagnosis to the patient (Elwyn, Fetters, Gorenflo, & Tsuda, 1998; Seo, et al., 2000). Studies show variability in truth-telling practices among younger and older physicians (the latter being less inclined to reveal a cancer diagnosis), as well as differences in physicians’ disclosure practices toward younger versus older patients (the latter being less likely to receive full disclosure).

Individual differences in communication preferences related to gender, age and education go beyond cross cultural boundaries (Blackhall, Murphy, Frank, Michel, & Azen, 1995; Kagawa-Singer & Blackhall, 2001; Surbone, 2006c). Studies suggest specific gender-related differences in patterns and styles of communication. Women tend to appreciate more detailed information and to value especially the supportive elements of communication (Baider, Cooper, & De-Nour, 2000; D’ Agincourt-Canning, 2001; Surbone, 2003b). Research consistently indicates that cancer patients worldwide who are treated at large specialized institutions are especially likely to request full disclosure of their diagnosis, treatment options, and prognosis from their physicians (Chiu, et al., 2006; Fujimori, et al., 2005; Mystadikou, et al., 2004; Surbone, 2004b, 2006b). Patients who receive care at teaching hospitals or specialized oncology units are also exposed to more information than those who receive care in nonspecialized or rural centers, or in general wards or outpatient clinics. At present, we lack empirical data on the information needs and preferences of those latter cancer patients, and this should caution us regarding possible generalizations with respect to truth telling and full disclosure.

Information and truth do not coincide.

Information is only a step in the process of communication.

Communication is a bidirectional iterative open-ended process between patients and physicians over the entire course of their relationship.

Communication takes place in specific individual and sociocultural contexts.

Truth Telling and Cultural Competence in Integrative Oncology

To understand persisting cross-cultural differences in truth telling to cancer patients, several societal factors need to be taken into account (Anderlik, Pentz, & Hess, 2000; Novack, et al., 1971; Surbone, et al., 2004b). It is possible that in multiethnic societies such as the United States or the United Kingdom, the law represents a unifying element that places a strong emphasis on individual decisions, while in societies with more uniform national values, the appeal to tradition over the law remains a valid one, and physicians and families may still decide to withhold unfavorable news to protect cancer patients (Surbone, et al., 2004b). In multiethnic societies, cultural differences between patients and health-care professionals are often at the origin of misunderstandings and disagreements between health-care workers, patients, and families, and may escalate to bedside conflicts with respect to truth telling, end-of-life choices, prevention and screening, and involvement in clinical trials (Anderlik, et al., 2000; Betancourt, 2003, 2006; Dhruva, Cheng, Kwon, Luce, & Abrams, 2006; Kagawa-Singer & Balckhall, 2001). The growing literature on cultural competence in the United States shows that skilled cross-cultural negotiation is needed when health-care professionals are asked to withhold the truth from the patient about the diagnosis or with regard to end-of-life matters. The notion of “offering the truth” to cancer patients based on allowing individual patients to choose their own paths and rhythms was proposed as an effective way of showing respect for patients’ autonomy in accord with their own cultural norms and has been elaborated and applied successfully in oncology (Freeman & Offering T, 1993).

Anthropological and medical research have shown that words do not have the same meaning and resonance in all contexts. Uttering a “bad word” such as cancer is considered to negatively affect patients and their illness outcome in certain cultures, and in certain languages, words such as cancer or depression do not exist. (Carrese & Rhodes, 1995; Levy, 1997; Tanaka-Matsumi & Marsella, 1976). A 2007 Italian survey showed that many southern Italian patients still refuse to write down the word cancer, even after having been informed of their diagnosis, because cancer is still a metaphor for intense suffering or death or social stigma to them (Bracci, et al., 2008; Sontag, 1978). By contrast, those same patients appeared to be highly knowledgeable of their cancer treatments, suggesting a persisting culture of partial disclosure (Bracci, et al., 2008). It is possible that less well-informed patients hold on to unrealistic hopes for a cure and thus they selectively hear and retain only information that concerns cancer treatments. On the other hand, it is also possible that their oncologists focus almost exclusively on treatment recommendations as a way to avoid discussing the true meaning of the cancer diagnosis and prognosis with patients and families who are not yet accustomed to a culture of full disclosure (Surbone, 2008).

Cross-cultural differences affect also the roles of families with respect to the degree of information given to cancer patients and involvement in patients’ decision-making styles. Cancer is a “disease” of the entire family, and in most societies the family bears the final burden of taking care of the physical, emotional, and financial needs of cancer patients (Baider, et al., 2000). In cross-cultural encounters with cancer patients in multiethnic societies such as the United States, family members sometimes ask doctors to withhold or downplay the truth about a cancer diagnosis or prognosis (Anderlik, et al., 2000). In many countries, especially in Asia, the oncologist consults with family members before revealing a cancer diagnosis to the patient. In most non-Western countries cancer patients rarely meet their doctors alone. Instead, relatives attend clinical appointments with them and participate in major decisions in treatment and end-of-life choices (Baider, et al., 2000). The presence of relatives in addition to the patient tends to result in longer clinical visits, as relatives ask questions relevant to their own caregiving roles (Farber, Egnew, Herman-Bertsch, Taylor, & Guldin, 2003; Higginson & Costantini 2002.).

In integrative oncology, a holistic approach to each cancer patient requires considering the patient within his or her relational and social context. Often, relatives and friends help the patient research alternative and complementary interventions or make suggestions based on their experiential knowledge. Research suggests that caregivers gather medical information from sources other than the patients’ oncologist, including the Internet, to help the patient make treatment choices (Ernst & Schmidt, 2004). Physicians and all professionals in integrative oncology should thus be particularly sensitive about and open to talking to important figures in their patients’ life, while, at the same time, supporting the patients’ autonomy.

Cross-cultural differences in cancer care are more apparent now in Western multiethnic societies compared to more homogeneous countries. However, culture has profound implications in all contemporary societies, as different cultures coexist within dominant ones and multiculturalism is increasingly common because of higher demographic mobility and global communication (Kagawa-Singer & Backhall, 2001). Moreover, to the extent that both the patient and the physician always engage in an asymmetric yet reciprocal relationship, carrying their own personal and cultural identities, every clinical encounter and every patient–doctor relationship is an exercise in cultural competence (Surbone, 2006c).

In the last decade, there has been a remarkable shift in attitudes and practices of truth telling worldwide. Cancer patients are increasingly more informed of their diagnosis and treatments and more involved in the decision- making process. However, cultural and individual differences in truth telling in oncology persist and partial and nondisclosure still occur in many contexts. Whether and how to discuss prognosis remains a highly debated issue, as it is difficult to reconcile truthfulness with hope and uncertainty.

The choice of alternative therapies may in itself be influenced by cultural factors. The ability to deliver culturally competent cancer care is based on humility, sensitivity, respect, and curiosity about different patterns and styles of communication with cancer patients in different cultural contexts (Angell, 1988; Betancourt, 2003; Kagawa-Singer, 2003). Avoiding any form of cultural hegemony and stereotyping is of paramount importance when oncologists talk with cancer patients about complementary and alternative treatments or possible interventions on lifestyle or healing strategies based on spiritual dimensions. From an integrative oncology perspective, all therapeutic elements are subject to individual and cultural variability; judgmental or arrogant attitudes hinder the communication process.

Truth in the Clinical Context of the Patient–Doctor Relationship

The existence of illness is an undeniable fact of life and indeed a proof that life largely escapes our control (Code, 1993). The ill person consults a physician in search of truth and healing. Patients and physicians enter the patient–doctor relationship because they share the common project of achieving a rational understanding of the patients’ suffering. By giving a name to the patients’ suffering in the form of a diagnosis, physicians help transform their patients’ anonymous suffering into a better known entity—an illness—that can be treated and at times even cured. Through the treatment process, physicians help their patients restore, in part at least, their well-being and regain some degree of the control that illness inevitably takes away (Barona, 1997; Galeazzi, 1997; Surbone, 2000).

Medical truth is composed of different elements and different kinds of truths: it is medical, clinical, and therapeutic as well as scientific; it is existential, practical, moral as well as objective; it is told in first as well as in third person; and it is about diagnosis as well as prognosis and cure, or lack of cure. Truth in the patient–doctor relationship is neither a harmonious blend of these elements nor the result of the predominance of one over the other. Rather there is a persistent gap, an unbridgeable distance between the subjective and objective elements of this truth. There is also distance between the two partners of the relationship, which is not merely existential but primarily epistemic, as the patient and the doctor learn and know different aspects of the patients’ illness and its treatment differently (Surbone & Lowenstein, 2003a). Patients and physicians use different methods of inquiry into the truth, and the objects of their knowledge, as well as their interests, are different. One—the patient—knows by direct personal and corporeal experience. The other—the physician—knows by generalization and abstraction (Surbone, 2000).

Western cultures tend to assume that “knowledge worthy of the name must transcend the particularities of experience to achieve objective purity and value neutrality” (Code, 1993). This ignores both the role of the knower in generating truth and the subjective, contextual, and relational dimension of knowledge in the patient–doctor relationship. By privileging a narrow biomedical model in clinical medicine, we overemphasize the objective dimension of disease and tend to ignore that illness is first a subjective event, a unique and disrupting, when not devastating, event in a person’s life. As the subjective dimension of disease can hardly be measured with scientific methodology, it often discarded as unreal (Rollin, 1979; Surbone, 2000). The equation of “real” with “scientifically measurable” contrasts with a view of science in postmodern philosophy that accepts the notion of provisional open-ended truths and rejects uncritical scientific realism (Balestra, 1990). However, in medicine, the belief in an absolute neutral objective medical truth awaiting to be discovered by the doctor still dominates, and physicians are seen as the only ones who “tell” the truth to their patients (Surbone, 2000).

When the relationship between cancer patients and their oncologists is recognized as an open-ended dynamic process of ascertainment and constant reassessment of the truths shared between them, truth telling is no longer the unidirectional act of the physician to the patient. Rather, the two partners communicate and together they try to make sense of the illness.

While the concern of the patient–doctor relationship is the patients’ illness, in the traditional model of truth telling the physician takes center stage. The truth of the patients’ illness is seen as a static object waiting to be described by the doctor. When the doctor is assumed to be the sole source of truth in the relationship, the patient is silenced. Yet knowledge in clinical medicine always has objective, subjective, and contextual dimensions that can be known only through the cooperation of patients and physicians, who share a common therapeutic goal (Surbone, 2000).

Prejudices and Truth in Clinical Medicine

In clinical medicine, doctors often see patients as lacking sufficient knowledge and authority to participate fully and actively in their care. It is undeniable that there are profound discrepancies between lay and professional judgments. At times,

superstitions and prejudices may hamper communication in the patient–doctor relationship. Fears and misinformation among lay people about disease, its cause, and its transmission, may lead them to enter into discussion about health and illness only on the basis of presuppositions that actually serve to disrupt the possibility of open, well-informed debate and communication. (Edgar, 1997)

Disagreements among patients, the public, and physicians, as well as cross-cultural variations regarding the definition of health and well-being, can be key points at which communication easily breaks down (Edgar, 1997). Prejudices, however, are not only the prerogative of patients. Physicians’ prejudices may also play a major role in the clinical setting, as demonstrated by the occurrence of unfair or discriminatory treatment of minority patients in some medical encounters (Betancourt, 2003; Mahowald, 2000). An additional prejudice held by physicians and by oncologists in particular is to consider alternative and complementary medicine to be, a priori, ineffective. A skeptical attitude hinders the patient–doctor relationship, and cited studies show that patients may hold back information from their oncologists.

Clinical experience shows that cancer patients would like their oncologists to tell them “the truth” about whether or not a complementary measure is safe and effective, and that they want to have physicians’ approval for their use of them. Unfortunately, while hard evidence is still lacking for most complementary treatments, integrative oncologists may attempt to provide answers using their inference and intuition instead of admitting to a lack of evidence or knowledge, to satisfy their patients’ expectations for truth and reassurance. In integrative oncology, it may be especially difficult to strike a balance between showing interest and providing patients with adequate information, on one hand, and remaining truthful to existing evidence on the other. It is important to recognize that for cancer patients, being able to ask their oncologists questions and receive respectful responses from them are just as important as the content of the answers they are given. At times, patients are looking for an open channel of communication with their oncologists, one in which they feel accepted and appreciated (Weil, 2000). This intrinsic value of communication can coexist with the uncertainty of oncology and of integrative oncology.

Finally, oncologists, in focusing on the importance of providing accurate information to their patients, may lose sight of other needs of their patients, who are trying to live with cancer (Surbone, 2006a). Owing to the physical pain, the psychological suffering, and the social isolation that cancer patients often endure, their experience of cancer and its treatment is often characterized by a deep sense of “losing control.” To provide effective integrative cancer care it is essential not only to respect patients’ right to information but also to be partners with them in searching for the truth of their illness and in making sense of their lives with cancer.

Truth and Truth Telling: A Reciprocal Step in the Patient–Doctor Relationship

The impact of the words uttered by the physician in the patient–doctor relationship testifies to the depth of the responsibility that physicians have toward their patients in searching for the truth and sharing it with them (Galeazzi, 1997). In the patient–doctor relationship the knowledge and the truth of each is different and yet is always dependent on, and influenced by, the other. As the boundaries between objectivity and subjectivity are blurred, the central role of truth telling in clinical medicine emerges as the recognition that human beings deserve the truth (Williams, 2002). Truth telling, however, is only a step in the relationship between the patient and the integrative oncologist. The relationship itself has profound therapeutic value. Even when evidence to support any truth statement about a given complementary or alternative measure may be lacking, the relational value of truthfulness in the patient–doctor relationship is part of the healing purview of integrative oncology.

In complex human relationships of patients and doctors, each has an equal responsibility to be truthful, as each is bound by justice and trust in a goal-oriented, asymmetric yet mutual, covenant (Baier, 1994; Pellegrino, 1992; Pellegrino & Thomasma, 1988). Initially, the patient contributes the truthful description of his or her subjective suffering and the lived context of the truth, while the physician truthfully decodes and interprets the patients’ symptoms and signs, as well as the results of various tests. During the course of their therapeutic alliance, the patient and the doctor interact together and with the world, while continuing to search for the truth of the illness. Often, in the patient–doctor relationship an absolute truth does not exist or cannot be found. Yet truthfulness helps the patient move beyond despair by shifting the goal of the therapeutic relationship from simply “repairing the disease” to making sense of the patient’s life with his or her illness.

Truth Telling from the Doctor to the Patient

Truth telling in the patient–doctor relationship presupposes and requires the virtues of sincerity and accuracy from both partners in the covenant. Accuracy lies in the skills and attitudes that help overcome the external and internal obstacles to discovery of the truth. Sincerity is a matter of disposition in the context of a relationship, “centered on sustaining and developing relations with others that involve different kinds and degrees of trust” (Williams, 2002). Clearly, the accuracy and sincerity required of the patient and the physician are different. In the truth-telling moments of the patient–doctor relationship, the physician has a special and specific responsibility to consider that any statement may be true, and yet that making a given statement may not be appropriate at a given time. In the case of a serious incurable illness, the reverberations of the physicians’ words can be shattering. Physicians are thus called not only to make a rational assessment in their truth telling to the patient but also to consider the full impact of their words on the patient, while resisting any form of paternalism.

The objective content of truth telling from the doctor is related to his or her authority, role, and responsibility in the patient–doctor relationship. The patient–doctor relationship arises from the patients’ suffering and vulnerability and the physicians’ authority, based on theoretical and clinical knowledge, to interpret this suffering (Galeazzi, 1997). The physician is called to recognize a pattern in the patients’ symptoms that leads to the formulation of a diagnosis, with the help of different tests and procedures. The physicians’ next task is to help the patient manage the illness through prescriptions, recommendations, and advice, in a spirit of partnership with the patient. When, at times, physicians are invested with the responsibility of “taking charge” temporarily of their patients’ situation because the patients request it, this should not be interpreted as a call for paternalism, but rather seen as part of the physicians’ partnerships with and responsibility toward their patients (Pellegrino & Thomasma, 1988).

In ancient medicine, the doctor’s role was perceived in magical terms. Today, physicians’ authority is earned rather than taken for granted and it rests on physicians’ ethical commitment to objectivity, honesty, and respect for their patients’ autonomy and right to be informed and to participate in making decisions about their health care.

Truth Telling from the Patient to the Doctor

At first glance it would appear that the patient has less truth-telling responsibility than the physician. The patient, however, enacts his or her specific responsibility to be truthful in describing symptoms, in describing the life context of the illness, and in reporting the changes that occur in the course of the illness, including whether or not he or she follows medical prescriptions, what side effects these have, and so on (Galeazzi, 1997). Internal obstacles, however, may keep patients from being entirely truthful. Sick persons may engage in self-deception, not due to insincerity, but rather as a much more complex matter related to the intensity of their bodily suffering (Merleau-Ponty, 1962). Unrealistic hopes, fears, and wishful thinking are among the possible coping mechanisms of seriously ill persons, and they are intimately related to vulnerability due to their illness. As noted in the diary of a 20th Century writer, “What I say isn’t necessarily true, but it explains, just by the fact that I say it, my suffering” (Pavese, 1977). The oncologist must be prepared to recognize that the patients’ self-deception may be an unconscious defense mechanism in the face of suffering and mortality. When deception, on the contrary, is intentionally used to divert the physicians’ inquiry, the fiduciary nature of the patient–doctor relationship is threatened and the mutual discovery of truth is obstructed.

Sometimes, cancer patients do not feel comfortable being truthful to their oncologists because they are afraid of being misjudged or ignored. As noted earlier, for example, many patients using complementary medicine do not inform their oncologists (Yates, et al., 1993). While it is true that oncologists work under tremendous time and economic pressure that, at times, limits their availability to properly listen to their patients, often patients sense, correctly, that their oncologist is reluctant to talk about the use of complementary medicine, due to limited knowledge and lack of teaching and training in integrative oncology (Weil, 2000). In most cases, the lack of openness that stems from the patients’ fear of being disapproved by her oncologist does not result in any major damage to the patient. However, when cancer patients use complementary treatments during phase I investigational trials without informing their treating oncologists or against their recommendations, serious health risks can follow (Hlubocky, et al., 2007).

It is reassuring that there appears to be a trend toward more open communication between cancer patients and oncologists regarding the use of complementary and alternative healing methods. In integrative oncology, where the thoughtful and rational combination of conventional and complementary therapies for cancer are the aim, patients and oncologists share an equal responsibility to be honest and truthful about the use and the appropriateness of complementary measures.

Conclusion

The practice of medicine should be a shared therapeutic effort of patients and physicians within a functional system that includes caregivers and institutions, and it should be informed by and ruled by allegiance to “truth.” In his latest book, Truth and Truthfulness. An Essay in Genealogy, Bernard Williams addresses the problematic coexistence in our society of a demand for truthfulness that is accompanied by an equally pervasive suspicion about truth itself. According to Williams, this problem could be solved if we were to shift our search for the “truth” to a search for “making sense” of what happens to us (Williams, 2002). This perspective can help us understand the patient–doctor relationship, where patients and physicians together try to “make sense,” in more or less provisional or definite ways, of the presence of illness in the patients’ life, by analyzing and connecting multiple intertwined truths.

In the patient–doctor relationship, the process of making sense is mediated by, and is built on, the truth that the patient and the doctor share within the boundaries of their asymmetric relationship. Cancer patients and their oncologists look for and share the truth of the patients’ illness in a binding relation that is, and should be, especially strong when the two parties engage in the project of integrated oncology. The individual autonomy of our cancer patients is often limited by their social and cultural context and by their religious beliefs, by their personal relationships with friends and families, and by the asymmetry of knowledge and of power inherent to any clinical encounter. Consideration of these relational aspects of patients’ autonomy, accompanied by full awareness of the asymmetric dynamics of the patient–doctor–society relationship, can enhance the oncologists’ ability to share the many evolving truths of the illness with their cancer patients and help them make sense of their lives with cancer (Sherwin, 1998; Surbone, 2006a; Taboada & Bruera, 2001). When we come to grips with the fact that “truth” for our cancer patients is not only a matter of objective, scientifically measurable elements that we must identify and interpret but also of “making sense” of their suffering, then we can begin to understand the meaning of truth telling from multiple perspectives. Discussion of prognosis, for example, goes beyond telling or not telling the statistical truth to include the cognitive, psychological, and spiritual aspects of the interplay of medical certainty and uncertainty, of human hope and expectations, and of making sense of one’s vulnerability and mortality. In the broad perspective of healing the whole person, it is possible to be truthful with seriously ill patients and to give opinions and advice to patients facing difficult choices without taking away hope. The intent and effort to do so requires a deep commitment both to the truth and to the relationship with one’s patients, which should inform the practice of integrative oncology.

ACKNOWLEDGMENTS

I am thankful to my philosophy mentor, Dominic J Balestra PhD, Professor of Philosophy at Fordham University in New York, for many insightful discussions of truth in medicine and to William Russell-Edu, Librarian at the European Institute of Oncology in Milan, for his valuable assistance.

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