Truth telling is central to communication between the patient and the doctor in clinical medicine. Due to the nature of any cancer illness, the debate on truth telling in oncology has always been particularly intense. Ethical issues in oncology, including truth telling, are magnified by several factors: the severity of the illness and the negative metaphorical value of a cancer diagnosis; the physical and psychological suffering of the patient, at times extreme at the end of life; the impact of different degrees of social stigmatization and discrimination; the uncertainty related to the cancer prognosis and to the outcome and potential toxicity of experimental treatments; the side effects of many standard cancer therapies; and finally, the difficult balance between patients' desire to be involved in their care and their increased vulnerability due to the complex reality of cancer. Truth telling is at the core of contemporary biomedical ethics, where it relates to the doctrines of informed consent and of cultural competence. The doctrine of informed consent was born in 1947 as a result of the Nuremberg Trial. Still in the early 1960s, in the US 10% of surveyed physicians would never reveal a cancer diagnosis. Over the following two decades, however, physicians' truth telling practices in the US changed dramatically, and by the late 1970s only 2% of surveyed US physicians did not reveal the cancer diagnosis to their patients. The emphasis on patient's autonomy, grounded in a strong tradition of privacy rights and personal liberty, became the leading principle in western bioethics, where the sick person has a right to self-governance and to the information needed to become an active partner in her care. In other cultural contexts it was considered legitimate to conceal both diagnosis and prognosis to seriously ill patients. This was rooted in a culture, which privileges family and community ties over individual self-governance and assigns a protective role to family and also to physicians. Individual autonomy was synonymous with isolation and as there was limited belief that patients could make informed decisions about their own health. Painful medical truths were often withheld or strongly mitigated to avoid taking away subtracting hope from the cancer patient or causing her severe distress. As a result, cancer patients were rarely told the truth about the diagnosis and the prognosis, which were usually revealed by the doctor only to one or more family members. Truth telling to cancer patients was also rendered especially difficult due a void of psychosocial support structures for cancer patients. Over the past decade, however, informed consent policies and truth telling attitudes have suddenly evolved worldwide. This evolution has been paralleled by a shift in the understanding of the patient-doctor relationship as less paternalistic. Informed consent is now seen as a legal and a deontological requirement for physicians in many countries, and many oncologists now provide information to their cancer patients. Public polls conducted through the media in different countries show a parallel shift in public opinion in favour of more open disclosure of the truth to cancer patients. The reasons that have contributed to the evolution of truth telling attitudes and practices in oncology throughout the world appear similar to the ones that had been invoked to explain the shift that occurred between 1960s and 1970s in truth telling attitudes and practices of North American physicians. Among the main contributing factors are: therapeutic advances in the field of oncology that have encouraged physicians to be more optimistic and more open to their patients; increased public knowledge of the nature and treatment of cancer; increased training of physicians in palliative and end-of-life care; increasingly strict legal requirements for information and informed consent, and patient and public activism. These different medical, legal and societal factors are strictly intertwined, and it is impossible to determine whether the public or the medical profession or the legislators have contributed more to the shift toward in truth telling attitudes and practices worldwide. Furthermore, it is likely that each country and culture has had a specific evolution, at times unique in some respects. Despite the international trend just described, partial and non disclosure are still supported and practiced by physicians throughout the world. Studies suggest that even among those physician who assert that patients have a right to be informed, the actual rate of disclosure remains low. Also, surveys of cancer patients reveal a persistent lack of awareness of the severity and curability of their illness. Variations in patients' and physicians' attitudes and practices are also related to the age of patients and also of physicians and to geographic location with differences in disclosure and information rates in urban versus rural communities in almost all countries. Major variations are also reported among patients and physicians meeting in leading teaching institutions and large city hospitals versus private and peripheral practices, regardless of the country. Empirical research on truth telling attitudes and practices will be reviewed during the session. Cross-cultural differences in truth-telling attitudes and practices have became a major source of debate among bioethicists, who often interpreted them as arising from the delicate interplay between autonomy and beneficence in medicine, under the influence of cultural variables. As truth telling attitudes and practices toward cancer patients evolve worldwide, we need a better understanding of the key notions that underlie different arguments about the ethical justifications for truth telling and truth withholding. The debate surrounding truth telling has now finally moved worldwide from whether or not to tell the truth to how and when best to share information with our patients. In many multiethnic clinical practices, it has become common to “offer the truth” to cancer patients, allowing individual patients to choose their own paths and rhythm. This is often an effective mean to respect the patients' autonomy while also respecting their own cultural norms. The notion of individual autonomy, however, needs to be reconceptualized in terms of respect for the patient's “relational autonomy”. Autonomy is a complex concept, which refers both to the one's capacity to choose, but also to the ability to implement one's choices. Autonomy is a necessary attribute of rational human beings and it is universally valid. However, both internal and external factors and resources contribute to one's autonomy and from the beginning to the end of our lives, we are embedded in a context of social relations, which shape us and sustain us. Thus, autonomy is always relational and situated, rather than simply a matter of individual choice. Understanding “relational autonomy” helps framing the ethics of truth telling and understanding those many unsolved aspects of truth telling that go beyond cultural differences. For example, imposing the truth onto an unprepared patient whose cultural expectation is to be shielded from painful medical truths is not necessarily an act of respect for autonomy. The notions of cultural sensitivity and of cultural competence are also essential to the discourse on truth telling. Cultural differences between patients and health care professionals, in fact, give often rise to some common bedside misunderstandings and conflicts with respect to end of life choices, prevention and screening, involvement in clinical trials and especially with respect to truth telling. Delivering culturally sensitive cancer care, capable also of reaching and overcoming organizational and structural barriers, has become a health care priority worldwide. In highly multiethnic societies, such as the US, the acquisition of knowledge and skills in cultural competence is now a requirement in medical schools. Truth telling in medicine is not about the disclosure of a unilateral truth from the doctor to the patient. Truth telling is about sharing a dynamic truth within an ongoing process of communication with the cancer patient. As an experiential skill, communication can and should be taught with different methodologies that have proven very useful in improving physicians' communication skills as well as patients' satisfaction. Yet, clinical algorithms and guidelines for optimal communication are difficult to establish and they are not necessarily applicable cross-culturally. Being a good communicator involves the moral character of the physician and requires individual and cultural sensitivity, empathy and compassion, respect for the patient and genuine interest in what she has to say and in how she feels. Studies on patient preferences seem to suggest strong similarities with western patient in terms of patients' general needs and preferences for communication. In many countries now, patients expect truthfulness about their illness and wish to participate to the decision making process involving their treatments. More informed and more involved patients seem to fare better in terms of compliance with difficult therapies, and sharing the decision making process between the patient and the doctor seems to result in better care and better outcomes. However, even within western contexts with a tradition of full disclosure, there are still many problematic aspects of truth telling in oncology. Issues under investigation include discussion about prognosis, genetic information, risk assessment and statistical predictions; the involvement of families in information and decision making processes; patient needs and satisfaction with information provided; special aspects of truth telling in pediatric and geriatric oncology; and disclosure of medical errors in oncology. These will be discussed in the session, along with specific research targets to increase our ability to deliver individually and culturally sensitive information to our patients and thus enhance the quality of cancer care in the developed and developing worlds.
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