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
Personal ViewTelling the truth to patients with cancer: what is the truth?
Introduction
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 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 truth-telling 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 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 truth-telling in clinical oncology, and identify specific aspects that merit further investigation.
Section snippets
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
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 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
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 face the dilemma of how much truth to tell every individual with cancer.56 However, after practising medical oncology in
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
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. The truth at stake includes, but is
Search strategy and selection criteria
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2018, Critical Reviews in Oncology/HematologyCitation Excerpt :xiii]. This framework is in line with the relational view of autonomy (see Sections 2.1, 2.2 and Prainsack and Buyx, 2017), and with research conducted on truth disclosure in oncology (Surbone, 2006). However it has not yet been not considered in the SCC literature.
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2018, Critical Reviews in Oncology/Hematology