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Telling the truth to patients with cancer: what is the truth?
Personal View
Telling the truth to patients with cancer: what is the truth? Antonella Surbone Lancet Oncol 2006; 7: 944–50 Teaching Research Development Department, European School of Oncology, 20122 Milan, Italy (Prof A Surbone MD) [email protected]
Attitudes and practices of truth-telling to people with cancer have shifted substantially in the past few years. However, cultural and individual differences persist, and some difficulties common to all medical specialties are magnified in oncology. In this Personal View, I review and analyse data for attitudes and practices of truth-telling worldwide. I also assess ethical justifications, with special reference to interpersonal aspects of patients’ autonomy and the dynamic nature of truth in the clinical context. Examples are provided to show how this ethical perspective can help oncologists to frame the discourse on truth-telling and to find solutions to the dilemmas of whether, when, and how to tell the truth to their patients in clinical practice. Finally, I identify future targets for research.
Introduction
Mark Clarke/Science Photo Library
Truth-telling is central to communication between patients and their oncologists, and is related to the doctrines of informed consent and of cultural competence.1,2 The relationship between patients and doctors was initially centred on charismatic clinicians who made what they judged the best medical choices in their patients’ interests and who withheld the truth at their discretion. Nowadays, in industrialised regions, doctors are seen as being equal partners with their patients, who have a right to information to make their own choices.3 Excessive preoccupation with ideas of individual autonomy and partnership, however, can lead to application of the rules of reciprocity (rules of equal change or strict reciprocity) to the patient–doctor relationship, which are suited for voluntary bargaining between non-intimate equals. These rules do not capture the essence of the patient–doctor partnership, which is a dynamic asymmetrical relation of help involving individuals with unequal knowledge and power.4 The vulnerability induced by the illness in the patient enhances their dependence on other people (figure).5 Asymmetry and vulnerability are magnified in the relationship between patients with cancer and their
Figure: Patient–doctor relationships contain vulnerability and asymmetry
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oncologists owing to the serious nature of the disease, with its medical, psychological, and social ramifications. This fact is compounded by the complexity and potential risks of cancer treatments, which sometimes need the involvement of several oncologists who have discrete subspecialties, leading to fragmentation of care. The issues of whether, when, and how to tell the truth also assume special nuances when cancer is involved (panel 1). Any illness has objective, subjective, and relational aspects (ie, interactions between the affected individual, the doctor, and family, and social context and environmental variables during the course of the disease6,7). Together, these aspects contribute to the shared and dynamic nature of the truth of the patient’s illness. When oncologists do not take subjective, relational aspects of truth into account, and instead focus on the seemingly neutral objective truth of the patient’s disease, they present the illness as a set of biomedical facts, and truth-telling becomes a one-way act of information provided by the doctor.8 A narrow biomedical view also perpetuates the dominant role of clinicians over their patients, since only the oncologists know the truth and decide when and how to tell it to their patients, who are kept in a dependent-passive role.9 Sometimes, doctors and other health-care professionals deliver seemingly neutral medical information as a way to delegate responsibility to their patients, rather than to share it.10 However, when the relationship between patients and their oncologists is recognised as an open-ended dynamic process of ascertainment and constant reassessment of a truth shared between them, it acquires a different strength and character. Truth-telling then becomes a bidirectional process aimed at constructing—rather than merely discovering—the truth and at helping people with cancer to make sense of having and living with their disease. In the past few years, attitudes and practices of truthtelling have shifted greatly throughout the world.11 Increasingly, individuals with cancer are informed of their diagnosis and treatments, and more are included in the decision-making process than previously. However, cultural and individual differences persist in truth-telling in oncology, and partial and non-disclosure still happen in many contexts.12 Truth-telling in oncology is still far http://oncology.thelancet.com Vol 7 November 2006
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from being a settled issue or one that can be simply approached in a descriptive way. In this Personal View, I present empirical and ethical elements of truth-telling to patients with cancer. An overview of empirical data for the evolution and current status of truth-telling attitudes and practices worldwide is followed by analysis of the traditional justifications for disclosure and non-disclosure of truth. I then suggest an alternative ethical framework to help understand and address the dilemmas of truthtelling in clinical oncology, and identify specific aspects that merit further investigation.
Historical overview In 1947, the Nuremberg trial established that the Hippocratic view of the patient–doctor relationship centred on beneficence was insufficient to protect individuals from medical abuses, and indicated that every patient needed to express consent before any medical procedure.13 This process needed full disclosure of medical information. Still, in 1961, findings of a study14 of truth-telling practices in the USA showed that most doctors surveyed (by questionnaire) did not fully reveal a cancer diagnosis. In 1973, the Patient Bill of Rights was passed in the USA and, by 1979, only 2% of US oncologists surveyed said that they withheld the truth from their patients.15 Truth-telling attitudes and practices outside the AngloAmerican context, and within several ethnic groups in the USA, were rarely discussed until the late 1980s, and only in the 1990s did published work openly address the existence of major cross-cultural differences.10,16–22 In countries centred on family and community values, the word autonomy was typically perceived as being synonymous with isolation rather than freedom.10 Paternalism predominated in medicine. Families and doctors assumed protective roles with respect to patients with cancer. Painful medical truths were sometimes withheld or played down to avoid taking hope away from affected individuals or causing them severe distress. In the past few years in most developing countries, people with cancer have been kept in the dark, not been given the opportunity to ask questions and find answers, and have been deprived of the chance to put their affairs in order or to say goodbye to their loved ones.10,20 A striking change in truth-telling attitudes and practices is now taking place in European, Middle Eastern, and Asian countries as a result of several intertwined medical, legal, political, and societal factors.11,23–33 The reasons for these changes are, in part, similar to those that caused the shift in truth-telling practices of US oncologists a few decades ago.11,30,34 Developments in cancer treatments have facilitated oncologists’ communication with patients about diagnosis and management. Effective palliative care has allowed clinicians to shift their goals from cure to palliation while discussing openly with affected individuals the various stages of this difficult transition of the disease and the associated change from curative to palliative care. http://oncology.thelancet.com Vol 7 November 2006
Panel 1: Difficulties of truth-telling in oncology Arising from nature of cancer Metaphorical implications of the word cancer Intricacies of diagnosis and severity of prognosis Patients’ vulnerability due to physical and psychological symptoms Risk of isolation, discrimination, and social stigma Complexity of treatments and potential gravity of side-effects Need for several patient-doctor relationships Individual and cultural barriers to patients’ understanding of information provided Arising from particular aspects of cancer care Ensuring availability and quality of informed consent process for all patients Providing statistical information without underestimating medical uncertainty Balancing truth and hope when discussing progression of cancer Communicating with patients enrolled in clinical trials about risks and preliminary results Avoiding therapeutic misconceptions in early-phase clinical trials Disclosing medical errors that occur during treatments Managing specific aspects about genetic predisposition Negotiating misunderstandings in cross-cultural medical encounters Addressing information needs of families and caregivers
20 years ago, many countries did not have support structures to meet the emotional and practical needs of patients with cancer; nowadays, education and training in supportive care for all phases of a malignant disease’s course are available to oncology professionals.35 Legal and professional codes have also evolved, and most countries now have requirements for disclosure and informed consent.21,30 Patients’ involvement in health care has grown in most democratic countries, leading to changes in policy. People with cancer—especially women—have been pioneers in advocacy and have begun to participate in the design of clinical trials and the establishment of research priorities that are centred on patients.36 Globalisation of information through the media and through virtual communication has contributed substantially to raised public awareness of cancer. Via the internet, patients with cancer can: visit, search for, and obtain medical information about standard treatments and ongoing clinical trials; access available, official, institutional cancer websites; and engage in discussions and support groups.37 Although online sources are not always reliable or available (depending on socioeconomic status and local or national conditions), research shows that virtual communication is a potential source of equity in people with cancer in terms of information.38
Worldwide empirical data In a 1999 survey,39 no difference was noted in disclosure of cancer diagnosis by 167 clinical oncologists from developed and developing regions who attended the annual meeting of the American Society of Clinical Oncology. Reviews40 of published data suggest, however, that only 30% of people with cancer in less-developed 945
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countries, compared with more than 90% in industrialised nations, expect truthfulness about their illness and want to participate in the decision-making process for their treatment. Although the preferences of patients with cancer for information and to participate in decisionmaking might not always be consistent, empirical research39,41–44 from industrialised countries seems to suggest that individuals who are informed and included in decisions have better outcomes, especially in terms of adherence to difficult treatments, and that shared decision-making between patients and oncologists can positively affect outlook. Worldwide, people with cancer who are told the truth about their diagnosis seem to share similar needs and preferences for communication and to value the adequacy and accuracy of the information in terms of content over other aspects.26,28,33,45–51 Recognition of the inherent limitations of empirical studies of truth-telling is very important, because they focus on patients who are informed, and inevitably exclude uninformed individuals. At present, reliable data are not available for the many people worldwide who are not informed about their cancer diagnosis and treatment options; therefore, anecdotal reports and discussions with colleagues about their clinical experiences in different countries have to be relied on.52,53 In fact, despite international trends towards truth-telling to patients with cancer and growing ethical and legal requirements for informed consent, partial and non-disclosure still takes place regularly, and sometimes prevails, in oncology practices in many areas of the world. Findings of surveys25,26,30,34,54 have shown that patients’ awareness of the severity and curability of their malignant disease is poor in some countries and that actual disclosure of this information remains low, even by doctors who believe that people with cancer have a right to information. Differences in truth-telling to patients with cancer have been accounted for by historical, cultural, and religious variables that affect ethical and legal norms in various communities and countries. Cultural changes also seem to arise in cohorts with respect to changes in social structure and in attitudes over generations; variations in truth-telling have been reported worldwide in relation to the age and sex of the patient and their oncologist, to urban versus rural residence, and to the type of treating institution—eg, public or private outpatient clinic, or teaching or research hospital.33,39,49,55 Many aspects of truth-telling in oncology remain difficult in all cultures (panel 1).
Reconceptualising the ethics of truth-telling At first glance, the quandaries of truth-telling in oncology seem amenable to solutions, in individual cases, by applying the same conscious critical analysis that clinicians are accustomed to use in difficult clinical scenarios. Academic ethics can seem to add very little to the virtues that should make every clinician compassionate, sensitive, honest, and humble enough to 946
face the dilemma of how much truth to tell every individual with cancer.56 However, after practising medical oncology in different countries and cultural settings, in which I have learned and personally applied different standards of truth-telling in the face of clinical quandaries, I believe that analysis and reconceptualisation of the ethical justifications for disclosure and nondisclosure to patients with cancer will help oncologists to better frame and solve their clinical dilemmas as to whether, when, and how to tell the truth. Traditional ethical argumentation does not yield unequivocal solutions for oncologists with respect to truthtelling.57–59 Paternalistic interpretations of beneficence and the uncertainty of medical information have been invoked to justify non-disclosure, whereas the intrinsic good of truth-telling, both as a moral duty and in recognition of the benefits for patients’ autonomy have been used to validate disclosure.3,5,57–59 Of these, only the deontological argument that disclosure to patients is a moral duty under all circumstances seems unequivocal in its interpretation.3,60 By contrast, on the basis of autonomy and beneficence, in developed countries, patients should have a right to the full truth, because this information empowers them to make better decisions about their cancer treatment and their life plans. In other cultures however, withholding information from people with cancer is seen as an act of beneficence to protect them and as a way to respect some patients’ wish to exercise their autonomy to delegate—temporarily or permanently—the information and decision-making process to their oncologists and their loved ones.57,61 If we consider autonomy and beneficence as inter-related principles, cross-cultural differences in truth-telling can be seen as the result of variations in meaning and weight that are attributed to these standards according to cultural influences.62 Based on this interpretation, the absolute value of autonomy and beneficence as universal regulatory principles of human conduct is not questioned, but different expressions of these basic principles are allowed.57,61 A better insight into the motivations for existing differences in truth-telling to patients with cancer can be achieved by understanding the dynamic provisional nature of truth and the relational nature of autonomy. A discussion of these complex philosophical notions is beyond the limits and scope of this report. I shall, instead, focus on their relevance and application to the difficulties of truth-telling to people with cancer. Many different factors clearly are at stake in any clinical encounter, and they all contribute to the reality of the patient’s illness as it develops over time.7,8 The facts of the pathological report differ from how family dynamics affect the patient, and yet they might both contribute to the truth in the clinical context. Truth is, therefore, not a static object that awaits the neutral discovery of the doctor who then tells it to the patient. On the contrary, the truth of the patient’s illness is the result of different subjective and objective relational components, evolving and http://oncology.thelancet.com Vol 7 November 2006
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changing over time, that are mutually shared by the patient and the doctor during the course of their relationship. Truth-telling is, therefore, a dynamic, iterative, and interactive process that takes place between the oncologist and the patient, sharing many provisional truths in view of a common therapeutic goal.7 The relation of patients’ autonomy to truth-telling in oncology is very intricate and multifaceted.10,20,22,34,57,61 We are accustomed to a narrow understanding of selfgovernance based on an ideal notion of competent individuals.57,60,63 In this view, patients are regarded as free, self-sufficient, rational people who can make choices when properly informed. All individuals, however, are immersed in a web of relationships and connections with others that sustain them throughout their lives while generating responsibilities towards others. Interpersonal connectedness gives further meaning to individual autonomy and imposes constraints on the abstract notion of self-determination.9,64–69 This relation applies to patients with cancer too, because they also use their autonomy within specific relational and sociocultural contexts. From the traditional view of individual autonomy, competent individuals are judged capable of making decisions about health care, including life and death matters, because they are assumed to possess all necessary means and information to be able to understand and choose between their options.64 In oncology practice, however, we see that many individual, social, and cultural factors affect patients’ freedom of choice even when, technically, they have been fully informed about their treatment options and the risks and possible benefits associated with them. The relational view of autonomy pays special attention to the internal factors of mental capacity, stress, various levels of understanding of medical information, and different subjective dispositions to sharing in decision-making about their cancer care. This view also takes into account specific elements and effects of external factors of culture, class, and income, along with the elements of vulnerability and asymmetry inherent in the patient–doctor relationship, which shape patients’ capacity to choose and implement choices. In clinical encounters informed by a perspective that acknowledges relational autonomy, these factors are rendered transparent and, thus, are more easily recognised and dealt with by both partners in the relationship.64–69 As an example, let us consider a patient’s decision to participate in clinical research. This choice depends not only on information provided by the oncologist about an ongoing cancer trial but also on many inter-related factors, such as availability of the treatment in a specific country, the structure and resources of that country’s health-care system, and the patient’s access to specialised centres at which research is undertaken. These elements, in turn, are related to socioeconomic, cultural, and geographic factors beyond information received by the patient, no matter how adequate and comprehensible. A person with colon cancer who lives in a rural area, for example, might http://oncology.thelancet.com Vol 7 November 2006
have less opportunity to be enrolled in a clinical trial either because of scarcity of (or improperly given) information or because of geographic isolation or insufficient means to afford travelling long distances. Family organisation, support, and availability might differ in a rural community compared with a large city if the family shares responsibility for some activities. External support structures, from transportation to group meetings, are more likely to be unavailable in rural areas than in cities. Cultural attitudes to human research can also vary. Age is another factor that relates to societal and individual prejudices, because misunderstandings about elderly patients with cancer restrict access to clinical research.70 Such preconceptions can be more prominent in a rural context, where patients and families might have reduced access to information gained outside the patient–doctor relationship. The partnership between oncologist and patient has a role in the affected individual’s autonomous decision to participate in a clinical trial. Oncologists are engaged in a relationship with their patient and sometimes act as gatekeepers depending on different clinical practice settings. Information provided to patients should be based not only on assessment of their medical condition but also on understanding of the effects that the individual and sociocultural context of their lives with cancer might have on their decision-making. These human, contextual, and relational aspects of truth-telling form the real fabric of the professional relationship of help between the oncologist and the patient with cancer, in which affected individuals can share firmly in decision-making. The best outcome for patients might not always come from receiving the most effective drug but instead from getting the best care from their oncologists over the course of their illness. Continuity of active and supportive care, availability of family and friend caregivers, and the possibility to continue to engage in relationships and activities are all essential elements of effective cancer care.
Framing difficult aspects of truth-telling Restrictions on the autonomy of patients with cancer imposed by sociocultural context are a reality of our contemporary societies that cannot be eliminated or ignored in a medical encounter. Patients’ personal relationships with friends and families are also part, more or less overtly, of clinical meetings.71 The asymmetry of knowledge and power between the oncologist and the patient are inherent to their encounters.4 Only consideration of these relational aspects of patient’s autonomy and full awareness of the asymmetrical dynamics of the patient–doctor–society relationship can enhance the ability of oncologists to share with their patients the many evolving truths of their illness and to help them make sense of their lives with cancer.4,67,68 Also, when we come to grips with the fact that truth for individuals with cancer is a matter not only of objective scientifically measurable elements that the oncologist must identify and interpret, but also of making sense of the patients’ experiences and 947
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Panel 2: Future research Effect of sex, age, education, and socioeconomic status on perceptions of cancer Variations in needs for information throughout course of disease Discordance of perceptions about information provided Differences of truth-telling practices in specialised versus non-specialised settings Communication needs in developing countries Strategies to help effective disclosure in relation to safety Modalities, time, and extent of early release of clinical trial results to participants Exclusive aspects of responsibility in disclosing genetic information Role of communication aids to assist patients’ participation in decision-making Outcome measures for teaching and training programmes in communication skills and cultural competence
of their limited expectations, then we start to understand the meaning of truth-telling from several perspectives. During a session on international perspectives on truth-telling at the 2006 International Union Against Cancer (UICC) annual meeting, the speakers and the audience reported that the practice of withholding— wholly or partly—the truth from patients with cancer is still widespread, and gave detailed and moving accounts of the different cultural and religious beliefs that underlie this practice.53 A clear message emerged that oncologists have reached a reasonable level of awareness of cultural differences in truth-telling to patients with cancer and that now is the time to concentrate on solving everyday clinical dilemmas related to this issue. Suggestions put forward were not only to promote teaching and training for individual oncologists and for institutions to provide culturally-sensitive and competent cancer care but also to actively intervene in changing the negative attitudes to cancer in communities in which simply the word cancer has such negative connotations. Between the extremes of an absolute cultural relativism on one hand and setting up norms for the developed world as the standard for all people at the other, there must be room for understanding and respect of both scientific knowledge and different individual values, world views, and cultural practices.71–77 Learning about reverence for elderly people in developing countries or about family-centred decision-making in Latin-American communities—to give two examples—will improve clinicians’ ability to tell the truth to patients with cancer by virtue of having expanded their knowledge of humanity.75–77 Revisiting traditional understandings of truth and autonomy in the industrialised world by adding awareness of their dynamic and relational aspects will help us to foster real autonomy for patients and oncologists. Clinical experience shows that clinicians must, with every patient who has cancer, use their sensitivity to try to understand their different life circumstances and cultural and social contexts. Awareness of the dynamic shared nature of truth in clinical encounters and the relational aspects of patients’ autonomy can help by providing a method for approaching difficult aspects of truth-telling. Such awareness might not provide oncologists with a 948
simple algorithm or guidelines for solving such all dilemmas. Whether, when, and how to offer information about prognosis is one such area (panel 1). However, it helps to acknowledge the fact that any discussion of prognosis goes beyond telling or not telling the statistical truth and entails other elements of truth, including the cognitive, psychological, and spiritual aspects of the interplay of medical certainty and uncertainty, of human hope and expectations, and of facing one’s mortality.78 These issues are common to oncologists and to patients, and many truths are there to be shared within the patient–doctor relationship. Some of these will need to be told by the doctor to their patient, some will be learned by the doctor from the patient, and some will be established together. These truths are unlikely to come together in a unified final truth. Yet, together, they form a basis on which people with cancer can make sense of their prognosis and integrate it within their relationships and lives. As an example, I have had clinical encounters with two patients whom I have known for many years—one from a southern village in Italy and one from Florida, USA. Their diseases were progressing rapidly after many unsuccessful treatments, and she had to choose between an experimental treatment and palliative care. I presented to both individuals an honest picture of their serious condition and limited alternatives, and I provided both with accurate information to enable them to choose the best medical option according to their values, without imposing my own. The US patient started by asking exactly how long they had left to live, whereas the Italian patient never asked whether the relapse was still curable. Being aware of the limitations and uncertainties of medical knowledge and of our power to make exact predictions, I asked both patients to tell me more about the reasons for their questions (or lack of) and to share with me the goals and expectations that they had in mind, knowing their limited lifespan. I thus learned that both patients had deep and specific concerns for their young children’s future. Providing detailed statistical information helped the US patient, whose handicapped daughter was being considered for a school place far from their home. She chose to enter a phase II trial to not only try to prolong her life but also to maintain legal custody of her child and to keep her at home as long as she could live and care for her. For the Italian patient, a general discussion about how to tell his teenage children about his imminent death helped him decide on palliative home care.
Conclusion Many issues regarding truth telling to cancer patients still remain unsolved and should be addressed by future research (panel 2). Truth is the foundation for oncologists’ relationships with their patients. In a world where constant exchange of factual information has become typical in almost all aspects of life, oncologists should consciously avoid the tendency to equate truth-telling with simply providing their patients with objective medical information. http://oncology.thelancet.com Vol 7 November 2006
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Search strategy and selection criteria Relevant articles were selected by searching PubMed with the terms “truth-telling”, “informed consent”, “communication”, “cultural competence”, and “oncology” from 1960 to July, 2006, with no initial language restriction. Only articles in English, Italian, French, and German were read and only those published in the English language are cited. Additional relevant articles and books have also been selected from the author’s personal collection. Printed material has been acquired since 1990 from libraries at the European Institute of Oncology, Milan, Italy; Fordham University, New York, NY, USA; Memorial Sloan-Kettering Cancer Center, New York, NY, USA; and Yale University, New Haven, CT, USA.
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The truth at stake includes, but is not confined to, these neutral objective facts. Rather, it comprises other aspects. Truth derives from and is shared within the relationships that oncologists establish with their patients. During the course of these partnerships, truth emerges at times from honest disclosure of diagnosis and from discussion of either treatment options and risk or prognosis. At other times, truth becomes known from sharing moments of deep connection with patients, through words, silence, or a smile, and from reassuring them of our presence, attention, respect, and care. Hence, evolution of the truth and truthtelling in oncology are inextricably intertwined with development of the many aspects of a sincere, honest, authentic, and creative therapeutic relationship in oncology. As Bernard Williams wrote in Truth and truthfulness,79 in contemporary societies where “devotion to truthfulness” and “pervasive suspicion about truth itself” coexist, a reappraisal of “virtues of truth” is necessary. Such virtues include sincerity, accuracy, and authenticity, qualities shown by people in “wanting to know the truth, in finding it out, and in telling it to other people”. Along with possessing the virtues of truth, oncologists are helped in solving the dilemmas of truth-telling to people with cancer by an awareness of the dynamic provisional nature of truth and of the relational nature of the patient’s autonomy.
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Conflicts of interest I declare no conflicts of interest.
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Acknowledgments I thank William Russell-Edu, librarian at the European Institute of Oncology in Milan, Italy, for his expertise and assistance in acquiring the extensive material used for the literature search.
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Jiang Y, Li JY, Liu C, et al. Different attitudes of oncology clinicians toward truth telling of different stages of cancer. Support Care Cancer (published online April 19, 2006). DOI:10.1007/s00520-006-0071-4. Anderlik MR, Pentz RD, Hess KR. Revisiting the truth-telling debate: a study of disclosure practices at a major cancer center. J Clin Ethics 2000; 11: 251–59. Surbone A. The information to the cancer patient: psychosocial and spiritual implications. Support Care Cancer 1993; 1: 89–91. Psillidis L, Flach J, Padberg RM. Participants strengthen clinical trial research: the vital role of participant advisors in the Breast Cancer Prevention Trial. J Womens Health 1997; 6: 227–32. Murray E, Lo B, Pollack L, et al. The impact of health information on the internet on the physician-patient relationship: patient perceptions. Arch Intern Med 2003; 163: 1727–34. Helft PR, Hlubocky F, Daugherty CK. American oncologists’ views of internet use by cancer patients: a mail survey of American Society of Clinical Oncology members. J Clin Oncol 2003; 21: 942–47. Baile WF, Lenzi R, Parker PA, et al. Oncologists’ attitudes toward and practices in giving bad news: an exploratory study. J Clin Oncol 2002; 20: 2189–96. Sullivan RJ, Menapace LW, White RM. Truth-telling and patient diagnoses. J Med Ethics 2001; 27: 192–97. Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL. Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful? Arch Intern Med 2004; 164: 1999–2004. Fallowfield L, Jenkins V. Communicating sad, bad, difficult news in medicine. Lancet 2004; 363: 312–19. Hack TF, Degner LF, Dyck DG. Relationship between preferences for decisional control and illness information among women with breast cancer: a quantitative and qualitative analysis. Soc Sci Med 1994; 39: 279–89. Katz SJ, Lantz PM, Janz NK, et al. Patient involvement in surgery treatment decisions for breast cancer. J Clin Oncol 2005; 23: 5526–33. Butow PN, Maclean M, Dunn SM, et al. The dynamics of change: cancer patients’ preferences for information, involvement and support. Ann Oncol 1997; 8: 857–63. Parker PA, Baile WF, de Moor C, et al. Breaking bad news about cancer: patients’ preferences for communication. J Clin Oncol 2001; 19: 2049–56. Hagerty RG, Butow PN, Ellis PM, et al. Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis. J Clin Oncol 2005; 23: 1278–88. Voogt E, van Leeuwen AF, Visser AP, et al. Information needs of patients with incurable cancer. Support Care Cancer 2005; 13: 943–48. Chiu LQ, Lee WS, Gao F, et al. Cancer patients’ preferences for communication of unfavourable news: an Asian perspective. Support Care Cancer 2006; 14: 818–24. Surbone A. Communication preferences and needs of cancer patients: the importance of content. Supp Care Cancer 2006; 14: 789–91. Tang ST, Liu TW, Lai MS, et al. Congruence of knowledge, experience, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan. Cancer Invest 2006; 24: 360–66. Dhruva A, Cheng J, Kwong M, et al. Contrasts, conflicts, and change: a case in cultural oncology. J Support Oncol 2006; 4: 301–04. Surbone A, Palos GR, Khleif S, Lai YH. Truth telling and ethical issues: a world perspective—educational session 107-1/4. http:// www.2006conferences.org/pdfs/UICCDailyProgram.pdf. UICC World Cancer Congress 2006; Washington, DC, USA; July 8–12, 2006. (accessed Oct 13, 2006). Grassi L, Giraldi T, Messina EG, et al. Physicians’ attitudes to and problems with truth-telling to cancer patients. Support Care Cancer 2000; 8: 40–45.
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Glenn ND. Values, attitudes and beliefs. In: Brim OG, Kagan J, eds. Constancy and change in human development. Cambridge: Harvard University Press, 1980: 596–640. Brewin TB. How much ethics is needed to make a good doctor? Lancet 1993; 341: 161–63. Taboada P, Bruera E. Ethical decision-making on communication in palliative cancer care: a personalist approach. Support Care Cancer 2001; 9: 335–43. Tuckett AG. Truth-telling in clinical practice and the arguments for and against: a review of the literature. Nurs Ethics 2004; 11: 500–13. Spiro HM. Tolling the truth: part I and II. Science Med 2005; 10: 70–72. Kant I. On a supposed right to lie from altruistic motives (1797). In: Kant I, ed (translated by Beck LW). Critique of practical reason and other writings in moral philosophy. Chicago: University of Chicago Press, 1949: 346–50. Pellegrino ED. Is truth telling to the patient a cultural artifact? JAMA 1992; 268: 1734–35. Schneider CE. The practice of autonomy: patients, doctors and medical decisions. New York: Oxford University Press, 1998. van Kleffens T, van Baarsen B, van Leeuwen E. The medical practice of patient autonomy and cancer treatment refusals: a patients’ and physicians’ perspective. Soc Sci Med 2004; 58: 2325–36. Sherwin S. A relational approach to autonomy in health-care. In: Sherwin S, Feminist Healthcare Network, eds. The politics of women’s health: exploring agency and autonomy. Philadelphia: Temple University Press, 1988: 19–44. Mahowald MB. Genes, women, equality. New York: Oxford University Press, 2000. Donchin A. Understanding autonomy relationally: toward a reconfiguration of bioethical principles. J Med Philos 2001; 26: 365–86. Verkerk M. The care perspective and autonomy. Med Health Care Philos 2001: 4: 289–94. MacDonald C. Nurse autonomy as relational. Nurs Ethics 2002; 9: 194–201. d’Agincourt-Canning L. Genetic testing for hereditary breast and ovarian cancer: responsibility and choice. Qual Health Res 2006; 16: 97–118. Surbone A, Kagawa-Singer M, Terret C, Baider L. The illness trajectory of elderly cancer patients across cultures: SIOG position paper. Ann Oncol 2006; DOI: 10.1093/annonc/mdl178. Baider L, Cooper CL, De-Nour AK. Cancer and the family, 2nd edn. Sussex: John Wiley & Sons, 2000. Freedman B. Offering truth: one ethical approach to the uninformed cancer patient. Arch Intern Med 1993; 153: 572–76. Blackhall LJ, Murphy ST, Frank G, et al. Ethnicity and attitudes toward patient autonomy. JAMA 1995; 274: 820–25. Carrese JA, Rhodes LA. Western bioethics on the Navajo reservation: benefit or harm? JAMA 1995; 274: 826–29. Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life. “You got to go where he lives”. JAMA 2001; 286: 2993–3001. Searight HR, Gafford J. Cultural diversity at the end of life: issues and guidelines for family physicians. Am Fam Physician 2005; 71: 515–22. Surbone A. Cultural aspects of communication in cancer care. In: Stiefel F, ed. Communication in cancer care: recent results in cancer research, vol 168. New York: Springer, 2006: 91–104. Schapira L, Eisenberg PD, MacDonald N, et al. A revisitation of “Doc, how much time do I have?” J Clin Oncol 2000; 18: 2640–43. Williams B. Truth and truthfulness: an essay in genealogy. Princeton: Princeton University Press, 2002.
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Telling the truth to patients with cancer: what is the truth? Antonella Surbone Lancet Oncol 2006; 7: 944–50 Teaching Research Development Department, European School of Oncology, 20122 Milan, Italy (Prof A Surbone MD) [email protected]
Attitudes and practices of truth-telling to people with cancer have shifted substantially in the past few years. However, cultural and individual differences persist, and some difficulties common to all medical specialties are magnified in oncology. In this Personal View, I review and analyse data for attitudes and practices of truth-telling worldwide. I also assess ethical justifications, with special reference to interpersonal aspects of patients’ autonomy and the dynamic nature of truth in the clinical context. Examples are provided to show how this ethical perspective can help oncologists to frame the discourse on truth-telling and to find solutions to the dilemmas of whether, when, and how to tell the truth to their patients in clinical practice. Finally, I identify future targets for research.
Introduction
Mark Clarke/Science Photo Library
Truth-telling is central to communication between patients and their oncologists, and is related to the doctrines of informed consent and of cultural competence.1,2 The relationship between patients and doctors was initially centred on charismatic clinicians who made what they judged the best medical choices in their patients’ interests and who withheld the truth at their discretion. Nowadays, in industrialised regions, doctors are seen as being equal partners with their patients, who have a right to information to make their own choices.3 Excessive preoccupation with ideas of individual autonomy and partnership, however, can lead to application of the rules of reciprocity (rules of equal change or strict reciprocity) to the patient–doctor relationship, which are suited for voluntary bargaining between non-intimate equals. These rules do not capture the essence of the patient–doctor partnership, which is a dynamic asymmetrical relation of help involving individuals with unequal knowledge and power.4 The vulnerability induced by the illness in the patient enhances their dependence on other people (figure).5 Asymmetry and vulnerability are magnified in the relationship between patients with cancer and their
Figure: Patient–doctor relationships contain vulnerability and asymmetry
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oncologists owing to the serious nature of the disease, with its medical, psychological, and social ramifications. This fact is compounded by the complexity and potential risks of cancer treatments, which sometimes need the involvement of several oncologists who have discrete subspecialties, leading to fragmentation of care. The issues of whether, when, and how to tell the truth also assume special nuances when cancer is involved (panel 1). Any illness has objective, subjective, and relational aspects (ie, interactions between the affected individual, the doctor, and family, and social context and environmental variables during the course of the disease6,7). Together, these aspects contribute to the shared and dynamic nature of the truth of the patient’s illness. When oncologists do not take subjective, relational aspects of truth into account, and instead focus on the seemingly neutral objective truth of the patient’s disease, they present the illness as a set of biomedical facts, and truth-telling becomes a one-way act of information provided by the doctor.8 A narrow biomedical view also perpetuates the dominant role of clinicians over their patients, since only the oncologists know the truth and decide when and how to tell it to their patients, who are kept in a dependent-passive role.9 Sometimes, doctors and other health-care professionals deliver seemingly neutral medical information as a way to delegate responsibility to their patients, rather than to share it.10 However, when the relationship between patients and their oncologists is recognised as an open-ended dynamic process of ascertainment and constant reassessment of a truth shared between them, it acquires a different strength and character. Truth-telling then becomes a bidirectional process aimed at constructing—rather than merely discovering—the truth and at helping people with cancer to make sense of having and living with their disease. In the past few years, attitudes and practices of truthtelling have shifted greatly throughout the world.11 Increasingly, individuals with cancer are informed of their diagnosis and treatments, and more are included in the decision-making process than previously. However, cultural and individual differences persist in truth-telling in oncology, and partial and non-disclosure still happen in many contexts.12 Truth-telling in oncology is still far http://oncology.thelancet.com Vol 7 November 2006
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from being a settled issue or one that can be simply approached in a descriptive way. In this Personal View, I present empirical and ethical elements of truth-telling to patients with cancer. An overview of empirical data for the evolution and current status of truth-telling attitudes and practices worldwide is followed by analysis of the traditional justifications for disclosure and non-disclosure of truth. I then suggest an alternative ethical framework to help understand and address the dilemmas of truthtelling in clinical oncology, and identify specific aspects that merit further investigation.
Historical overview In 1947, the Nuremberg trial established that the Hippocratic view of the patient–doctor relationship centred on beneficence was insufficient to protect individuals from medical abuses, and indicated that every patient needed to express consent before any medical procedure.13 This process needed full disclosure of medical information. Still, in 1961, findings of a study14 of truth-telling practices in the USA showed that most doctors surveyed (by questionnaire) did not fully reveal a cancer diagnosis. In 1973, the Patient Bill of Rights was passed in the USA and, by 1979, only 2% of US oncologists surveyed said that they withheld the truth from their patients.15 Truth-telling attitudes and practices outside the AngloAmerican context, and within several ethnic groups in the USA, were rarely discussed until the late 1980s, and only in the 1990s did published work openly address the existence of major cross-cultural differences.10,16–22 In countries centred on family and community values, the word autonomy was typically perceived as being synonymous with isolation rather than freedom.10 Paternalism predominated in medicine. Families and doctors assumed protective roles with respect to patients with cancer. Painful medical truths were sometimes withheld or played down to avoid taking hope away from affected individuals or causing them severe distress. In the past few years in most developing countries, people with cancer have been kept in the dark, not been given the opportunity to ask questions and find answers, and have been deprived of the chance to put their affairs in order or to say goodbye to their loved ones.10,20 A striking change in truth-telling attitudes and practices is now taking place in European, Middle Eastern, and Asian countries as a result of several intertwined medical, legal, political, and societal factors.11,23–33 The reasons for these changes are, in part, similar to those that caused the shift in truth-telling practices of US oncologists a few decades ago.11,30,34 Developments in cancer treatments have facilitated oncologists’ communication with patients about diagnosis and management. Effective palliative care has allowed clinicians to shift their goals from cure to palliation while discussing openly with affected individuals the various stages of this difficult transition of the disease and the associated change from curative to palliative care. http://oncology.thelancet.com Vol 7 November 2006
Panel 1: Difficulties of truth-telling in oncology Arising from nature of cancer Metaphorical implications of the word cancer Intricacies of diagnosis and severity of prognosis Patients’ vulnerability due to physical and psychological symptoms Risk of isolation, discrimination, and social stigma Complexity of treatments and potential gravity of side-effects Need for several patient-doctor relationships Individual and cultural barriers to patients’ understanding of information provided Arising from particular aspects of cancer care Ensuring availability and quality of informed consent process for all patients Providing statistical information without underestimating medical uncertainty Balancing truth and hope when discussing progression of cancer Communicating with patients enrolled in clinical trials about risks and preliminary results Avoiding therapeutic misconceptions in early-phase clinical trials Disclosing medical errors that occur during treatments Managing specific aspects about genetic predisposition Negotiating misunderstandings in cross-cultural medical encounters Addressing information needs of families and caregivers
20 years ago, many countries did not have support structures to meet the emotional and practical needs of patients with cancer; nowadays, education and training in supportive care for all phases of a malignant disease’s course are available to oncology professionals.35 Legal and professional codes have also evolved, and most countries now have requirements for disclosure and informed consent.21,30 Patients’ involvement in health care has grown in most democratic countries, leading to changes in policy. People with cancer—especially women—have been pioneers in advocacy and have begun to participate in the design of clinical trials and the establishment of research priorities that are centred on patients.36 Globalisation of information through the media and through virtual communication has contributed substantially to raised public awareness of cancer. Via the internet, patients with cancer can: visit, search for, and obtain medical information about standard treatments and ongoing clinical trials; access available, official, institutional cancer websites; and engage in discussions and support groups.37 Although online sources are not always reliable or available (depending on socioeconomic status and local or national conditions), research shows that virtual communication is a potential source of equity in people with cancer in terms of information.38
Worldwide empirical data In a 1999 survey,39 no difference was noted in disclosure of cancer diagnosis by 167 clinical oncologists from developed and developing regions who attended the annual meeting of the American Society of Clinical Oncology. Reviews40 of published data suggest, however, that only 30% of people with cancer in less-developed 945
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countries, compared with more than 90% in industrialised nations, expect truthfulness about their illness and want to participate in the decision-making process for their treatment. Although the preferences of patients with cancer for information and to participate in decisionmaking might not always be consistent, empirical research39,41–44 from industrialised countries seems to suggest that individuals who are informed and included in decisions have better outcomes, especially in terms of adherence to difficult treatments, and that shared decision-making between patients and oncologists can positively affect outlook. Worldwide, people with cancer who are told the truth about their diagnosis seem to share similar needs and preferences for communication and to value the adequacy and accuracy of the information in terms of content over other aspects.26,28,33,45–51 Recognition of the inherent limitations of empirical studies of truth-telling is very important, because they focus on patients who are informed, and inevitably exclude uninformed individuals. At present, reliable data are not available for the many people worldwide who are not informed about their cancer diagnosis and treatment options; therefore, anecdotal reports and discussions with colleagues about their clinical experiences in different countries have to be relied on.52,53 In fact, despite international trends towards truth-telling to patients with cancer and growing ethical and legal requirements for informed consent, partial and non-disclosure still takes place regularly, and sometimes prevails, in oncology practices in many areas of the world. Findings of surveys25,26,30,34,54 have shown that patients’ awareness of the severity and curability of their malignant disease is poor in some countries and that actual disclosure of this information remains low, even by doctors who believe that people with cancer have a right to information. Differences in truth-telling to patients with cancer have been accounted for by historical, cultural, and religious variables that affect ethical and legal norms in various communities and countries. Cultural changes also seem to arise in cohorts with respect to changes in social structure and in attitudes over generations; variations in truth-telling have been reported worldwide in relation to the age and sex of the patient and their oncologist, to urban versus rural residence, and to the type of treating institution—eg, public or private outpatient clinic, or teaching or research hospital.33,39,49,55 Many aspects of truth-telling in oncology remain difficult in all cultures (panel 1).
Reconceptualising the ethics of truth-telling At first glance, the quandaries of truth-telling in oncology seem amenable to solutions, in individual cases, by applying the same conscious critical analysis that clinicians are accustomed to use in difficult clinical scenarios. Academic ethics can seem to add very little to the virtues that should make every clinician compassionate, sensitive, honest, and humble enough to 946
face the dilemma of how much truth to tell every individual with cancer.56 However, after practising medical oncology in different countries and cultural settings, in which I have learned and personally applied different standards of truth-telling in the face of clinical quandaries, I believe that analysis and reconceptualisation of the ethical justifications for disclosure and nondisclosure to patients with cancer will help oncologists to better frame and solve their clinical dilemmas as to whether, when, and how to tell the truth. Traditional ethical argumentation does not yield unequivocal solutions for oncologists with respect to truthtelling.57–59 Paternalistic interpretations of beneficence and the uncertainty of medical information have been invoked to justify non-disclosure, whereas the intrinsic good of truth-telling, both as a moral duty and in recognition of the benefits for patients’ autonomy have been used to validate disclosure.3,5,57–59 Of these, only the deontological argument that disclosure to patients is a moral duty under all circumstances seems unequivocal in its interpretation.3,60 By contrast, on the basis of autonomy and beneficence, in developed countries, patients should have a right to the full truth, because this information empowers them to make better decisions about their cancer treatment and their life plans. In other cultures however, withholding information from people with cancer is seen as an act of beneficence to protect them and as a way to respect some patients’ wish to exercise their autonomy to delegate—temporarily or permanently—the information and decision-making process to their oncologists and their loved ones.57,61 If we consider autonomy and beneficence as inter-related principles, cross-cultural differences in truth-telling can be seen as the result of variations in meaning and weight that are attributed to these standards according to cultural influences.62 Based on this interpretation, the absolute value of autonomy and beneficence as universal regulatory principles of human conduct is not questioned, but different expressions of these basic principles are allowed.57,61 A better insight into the motivations for existing differences in truth-telling to patients with cancer can be achieved by understanding the dynamic provisional nature of truth and the relational nature of autonomy. A discussion of these complex philosophical notions is beyond the limits and scope of this report. I shall, instead, focus on their relevance and application to the difficulties of truth-telling to people with cancer. Many different factors clearly are at stake in any clinical encounter, and they all contribute to the reality of the patient’s illness as it develops over time.7,8 The facts of the pathological report differ from how family dynamics affect the patient, and yet they might both contribute to the truth in the clinical context. Truth is, therefore, not a static object that awaits the neutral discovery of the doctor who then tells it to the patient. On the contrary, the truth of the patient’s illness is the result of different subjective and objective relational components, evolving and http://oncology.thelancet.com Vol 7 November 2006
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changing over time, that are mutually shared by the patient and the doctor during the course of their relationship. Truth-telling is, therefore, a dynamic, iterative, and interactive process that takes place between the oncologist and the patient, sharing many provisional truths in view of a common therapeutic goal.7 The relation of patients’ autonomy to truth-telling in oncology is very intricate and multifaceted.10,20,22,34,57,61 We are accustomed to a narrow understanding of selfgovernance based on an ideal notion of competent individuals.57,60,63 In this view, patients are regarded as free, self-sufficient, rational people who can make choices when properly informed. All individuals, however, are immersed in a web of relationships and connections with others that sustain them throughout their lives while generating responsibilities towards others. Interpersonal connectedness gives further meaning to individual autonomy and imposes constraints on the abstract notion of self-determination.9,64–69 This relation applies to patients with cancer too, because they also use their autonomy within specific relational and sociocultural contexts. From the traditional view of individual autonomy, competent individuals are judged capable of making decisions about health care, including life and death matters, because they are assumed to possess all necessary means and information to be able to understand and choose between their options.64 In oncology practice, however, we see that many individual, social, and cultural factors affect patients’ freedom of choice even when, technically, they have been fully informed about their treatment options and the risks and possible benefits associated with them. The relational view of autonomy pays special attention to the internal factors of mental capacity, stress, various levels of understanding of medical information, and different subjective dispositions to sharing in decision-making about their cancer care. This view also takes into account specific elements and effects of external factors of culture, class, and income, along with the elements of vulnerability and asymmetry inherent in the patient–doctor relationship, which shape patients’ capacity to choose and implement choices. In clinical encounters informed by a perspective that acknowledges relational autonomy, these factors are rendered transparent and, thus, are more easily recognised and dealt with by both partners in the relationship.64–69 As an example, let us consider a patient’s decision to participate in clinical research. This choice depends not only on information provided by the oncologist about an ongoing cancer trial but also on many inter-related factors, such as availability of the treatment in a specific country, the structure and resources of that country’s health-care system, and the patient’s access to specialised centres at which research is undertaken. These elements, in turn, are related to socioeconomic, cultural, and geographic factors beyond information received by the patient, no matter how adequate and comprehensible. A person with colon cancer who lives in a rural area, for example, might http://oncology.thelancet.com Vol 7 November 2006
have less opportunity to be enrolled in a clinical trial either because of scarcity of (or improperly given) information or because of geographic isolation or insufficient means to afford travelling long distances. Family organisation, support, and availability might differ in a rural community compared with a large city if the family shares responsibility for some activities. External support structures, from transportation to group meetings, are more likely to be unavailable in rural areas than in cities. Cultural attitudes to human research can also vary. Age is another factor that relates to societal and individual prejudices, because misunderstandings about elderly patients with cancer restrict access to clinical research.70 Such preconceptions can be more prominent in a rural context, where patients and families might have reduced access to information gained outside the patient–doctor relationship. The partnership between oncologist and patient has a role in the affected individual’s autonomous decision to participate in a clinical trial. Oncologists are engaged in a relationship with their patient and sometimes act as gatekeepers depending on different clinical practice settings. Information provided to patients should be based not only on assessment of their medical condition but also on understanding of the effects that the individual and sociocultural context of their lives with cancer might have on their decision-making. These human, contextual, and relational aspects of truth-telling form the real fabric of the professional relationship of help between the oncologist and the patient with cancer, in which affected individuals can share firmly in decision-making. The best outcome for patients might not always come from receiving the most effective drug but instead from getting the best care from their oncologists over the course of their illness. Continuity of active and supportive care, availability of family and friend caregivers, and the possibility to continue to engage in relationships and activities are all essential elements of effective cancer care.
Framing difficult aspects of truth-telling Restrictions on the autonomy of patients with cancer imposed by sociocultural context are a reality of our contemporary societies that cannot be eliminated or ignored in a medical encounter. Patients’ personal relationships with friends and families are also part, more or less overtly, of clinical meetings.71 The asymmetry of knowledge and power between the oncologist and the patient are inherent to their encounters.4 Only consideration of these relational aspects of patient’s autonomy and full awareness of the asymmetrical dynamics of the patient–doctor–society relationship can enhance the ability of oncologists to share with their patients the many evolving truths of their illness and to help them make sense of their lives with cancer.4,67,68 Also, when we come to grips with the fact that truth for individuals with cancer is a matter not only of objective scientifically measurable elements that the oncologist must identify and interpret, but also of making sense of the patients’ experiences and 947
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Panel 2: Future research Effect of sex, age, education, and socioeconomic status on perceptions of cancer Variations in needs for information throughout course of disease Discordance of perceptions about information provided Differences of truth-telling practices in specialised versus non-specialised settings Communication needs in developing countries Strategies to help effective disclosure in relation to safety Modalities, time, and extent of early release of clinical trial results to participants Exclusive aspects of responsibility in disclosing genetic information Role of communication aids to assist patients’ participation in decision-making Outcome measures for teaching and training programmes in communication skills and cultural competence
of their limited expectations, then we start to understand the meaning of truth-telling from several perspectives. During a session on international perspectives on truth-telling at the 2006 International Union Against Cancer (UICC) annual meeting, the speakers and the audience reported that the practice of withholding— wholly or partly—the truth from patients with cancer is still widespread, and gave detailed and moving accounts of the different cultural and religious beliefs that underlie this practice.53 A clear message emerged that oncologists have reached a reasonable level of awareness of cultural differences in truth-telling to patients with cancer and that now is the time to concentrate on solving everyday clinical dilemmas related to this issue. Suggestions put forward were not only to promote teaching and training for individual oncologists and for institutions to provide culturally-sensitive and competent cancer care but also to actively intervene in changing the negative attitudes to cancer in communities in which simply the word cancer has such negative connotations. Between the extremes of an absolute cultural relativism on one hand and setting up norms for the developed world as the standard for all people at the other, there must be room for understanding and respect of both scientific knowledge and different individual values, world views, and cultural practices.71–77 Learning about reverence for elderly people in developing countries or about family-centred decision-making in Latin-American communities—to give two examples—will improve clinicians’ ability to tell the truth to patients with cancer by virtue of having expanded their knowledge of humanity.75–77 Revisiting traditional understandings of truth and autonomy in the industrialised world by adding awareness of their dynamic and relational aspects will help us to foster real autonomy for patients and oncologists. Clinical experience shows that clinicians must, with every patient who has cancer, use their sensitivity to try to understand their different life circumstances and cultural and social contexts. Awareness of the dynamic shared nature of truth in clinical encounters and the relational aspects of patients’ autonomy can help by providing a method for approaching difficult aspects of truth-telling. Such awareness might not provide oncologists with a 948
simple algorithm or guidelines for solving such all dilemmas. Whether, when, and how to offer information about prognosis is one such area (panel 1). However, it helps to acknowledge the fact that any discussion of prognosis goes beyond telling or not telling the statistical truth and entails other elements of truth, including the cognitive, psychological, and spiritual aspects of the interplay of medical certainty and uncertainty, of human hope and expectations, and of facing one’s mortality.78 These issues are common to oncologists and to patients, and many truths are there to be shared within the patient–doctor relationship. Some of these will need to be told by the doctor to their patient, some will be learned by the doctor from the patient, and some will be established together. These truths are unlikely to come together in a unified final truth. Yet, together, they form a basis on which people with cancer can make sense of their prognosis and integrate it within their relationships and lives. As an example, I have had clinical encounters with two patients whom I have known for many years—one from a southern village in Italy and one from Florida, USA. Their diseases were progressing rapidly after many unsuccessful treatments, and she had to choose between an experimental treatment and palliative care. I presented to both individuals an honest picture of their serious condition and limited alternatives, and I provided both with accurate information to enable them to choose the best medical option according to their values, without imposing my own. The US patient started by asking exactly how long they had left to live, whereas the Italian patient never asked whether the relapse was still curable. Being aware of the limitations and uncertainties of medical knowledge and of our power to make exact predictions, I asked both patients to tell me more about the reasons for their questions (or lack of) and to share with me the goals and expectations that they had in mind, knowing their limited lifespan. I thus learned that both patients had deep and specific concerns for their young children’s future. Providing detailed statistical information helped the US patient, whose handicapped daughter was being considered for a school place far from their home. She chose to enter a phase II trial to not only try to prolong her life but also to maintain legal custody of her child and to keep her at home as long as she could live and care for her. For the Italian patient, a general discussion about how to tell his teenage children about his imminent death helped him decide on palliative home care.
Conclusion Many issues regarding truth telling to cancer patients still remain unsolved and should be addressed by future research (panel 2). Truth is the foundation for oncologists’ relationships with their patients. In a world where constant exchange of factual information has become typical in almost all aspects of life, oncologists should consciously avoid the tendency to equate truth-telling with simply providing their patients with objective medical information. http://oncology.thelancet.com Vol 7 November 2006
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Search strategy and selection criteria Relevant articles were selected by searching PubMed with the terms “truth-telling”, “informed consent”, “communication”, “cultural competence”, and “oncology” from 1960 to July, 2006, with no initial language restriction. Only articles in English, Italian, French, and German were read and only those published in the English language are cited. Additional relevant articles and books have also been selected from the author’s personal collection. Printed material has been acquired since 1990 from libraries at the European Institute of Oncology, Milan, Italy; Fordham University, New York, NY, USA; Memorial Sloan-Kettering Cancer Center, New York, NY, USA; and Yale University, New Haven, CT, USA.
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The truth at stake includes, but is not confined to, these neutral objective facts. Rather, it comprises other aspects. Truth derives from and is shared within the relationships that oncologists establish with their patients. During the course of these partnerships, truth emerges at times from honest disclosure of diagnosis and from discussion of either treatment options and risk or prognosis. At other times, truth becomes known from sharing moments of deep connection with patients, through words, silence, or a smile, and from reassuring them of our presence, attention, respect, and care. Hence, evolution of the truth and truthtelling in oncology are inextricably intertwined with development of the many aspects of a sincere, honest, authentic, and creative therapeutic relationship in oncology. As Bernard Williams wrote in Truth and truthfulness,79 in contemporary societies where “devotion to truthfulness” and “pervasive suspicion about truth itself” coexist, a reappraisal of “virtues of truth” is necessary. Such virtues include sincerity, accuracy, and authenticity, qualities shown by people in “wanting to know the truth, in finding it out, and in telling it to other people”. Along with possessing the virtues of truth, oncologists are helped in solving the dilemmas of truth-telling to people with cancer by an awareness of the dynamic provisional nature of truth and of the relational nature of the patient’s autonomy.
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Conflicts of interest I declare no conflicts of interest.
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Acknowledgments I thank William Russell-Edu, librarian at the European Institute of Oncology in Milan, Italy, for his expertise and assistance in acquiring the extensive material used for the literature search.
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References 1 Annas GJ. Informed consent, cancer, and truth in prognosis. N Engl J Med 1994; 330: 223–25. 2 Kagawa-Singer M, Kassim-Lakha S. A strategy to reduce crosscultural miscommunication and increase the likelihood of improving health outcomes. Acad Med 2003; 78: 577–87. 3 Beauchamp TL, Childress JF. Principles of biomedical ethics, 4th edn. New York: Oxford University Press, 1994. 4 Surbone A, Lowenstein J. Exploring asymmetry in the relationship between patients and physicians. J Clin Ethics 2003; 14: 183–88.
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