Culture
In recent years there has been substantial focus on the impact of culture on the communication process.[23,24] It is often suggested (somewhat reductively) that the world can be divided into ethical cultures that are either autonomy-based (found mainly in North America, northern Europe, and Australasia) or family-centered (the dominant type in Mediterranean, Eastern European, Asian, and traditional societies).[25] In this simplified model, autonomy-based ethical cultures have a strong focus on the individual patient's decision making and full disclosure to facilitate informed decision making. In contrast, family-centered ethical cultures are characterized as protecting patients from bad news in difficult situations.
Advocates of the view that the world can be divided up into two types of ethical cultures hold that the strong emphasis on autonomy that has become a dominant ethical theme in Western cultures may not be appropriate for non-Western societies,[26-31] and some claim that insistence on an autonomy-based approach may represent a disrespectful, insensitive, inappropriate, and potentially harmful form of “cultural imperialism.”[27-31]
Advocates of the view that the world can be divided up into two types of ethical cultures hold that the strong emphasis on autonomy that has become a dominant ethical theme in Western cultures may not be appropriate for non-Western societies,[26-31] and some claim that insistence on an autonomy-based approach may represent a disrespectful, insensitive, inappropriate, and potentially harmful form of “cultural imperialism.”[27-31]
This reductive view lacks nuance and runs counter to the evidence. There is substantial sociological and ethnographic data indicating that it represents an oversimplification of both Western and non-Western cultures. Adherence to an approach based on such a view may lead to excessively candid disclosure of information to some patients in Western countries who may personally prefer a lesser degree of disclosure of “bad news”—or to the unrequested withholding of information from patients in non-Western cultures who actually want more information and who want to be more involved in the decision making about their fate and well-being.
Culture is a complex concept that consists of traditions, beliefs, values, norms, symbols, and meanings that are shared, to varying degrees, by members of a community. It refers to shared realities and norms that constitute the learned systems of meaning for a particular community.[32] Culture influences the perceived scope and significance of obligations, duties, and interdependence with family; the perceived role of the patient in the decision-making process relative to that of other stakeholders in medical decision making; and the perceived likelihood that harm will arise from patient involvement in the decision-making process.[32]
It is critical to keep in mind that membership in a culture is not a social contract, and that persons within a cultural group may adhere to some norms while selectively rejecting others.[33,34] Thus, one of the outstanding characteristics of any cultural group is the existence of heterogeneity.
Neither cultural origin nor affiliation accurately predicts patient preferences regarding information transfer or decision making. Data suggest that there is substantial heterogeneity of preferences and that these cannot be predicted for any given individual on the basis of geography, culture, age, race, sex, religion, or education level.[35-62] Furthermore, there is often profound dissonance between family members' perception of a patient's preferences and the patient's actual preferences.[56,62-67] Thus, one cannot assume that communication preferences are culturally implicit[25] or that they can be reliably ascertained from family members; rather, they need to be explored individually with each patient.
An Approach to Talking to Family Members When They Have Made a Request That Information Not be Given to Their Loved One
Based on the above data, there is a very broad consensus of ethical,[25,68,69] medical,[24,39,47,70-72] psychological,[73] legal,[74], and anthropological[33] perspectives that physicians should ask patients about their individual preferences and act in accordance with patients' wishes unless there are compelling contraindications derived from concerns for harm.
It is helpful to ask patients about their information preferences at the same time that they receive information about the diagnostic or invasive procedure that they are about to undergo. We recommend offering patients a range of options: explain the results to me, explain the results to me with my family members, explain them first to my family and then to me, or tell the family first and let them decide what I should be told. This approach recognizes and ensures that authentic patient preferences are obtained and respected, avoids cultural stereotyping and unauthorized breaches of confidentiality, reduces the potential for a physician/family collusion to withhold desired information, and reduces the potential for conflict with family members by focusing on respect for known, documented patient preferences.
When a conflict does arise with family members who want to prevent discussion with the patient, a strategic approach such as that presented in Table 2 is often helpful.
Paternalism
How does one balance the patient's need for information with the concern that some patients may be harmed by their request for either too much or too little information?
When should the physician invoke the “therapeutic privilege” of paternalistically overriding a patient request or not seeking the patient's opinion?
If the clinician is concerned that harm may ensue from a patient's preferences—either a request not to receive important information (with the potential for poor decisions based on incomplete information regarding the likelihood of risks or the limitations of benefits) or a request for too much information (with the potential for severe psychological distress)—the physician has an obligation to discuss these concerns and to attempt to persuade the patient to change his or her request.[75,76] Attempts at persuasion are a legitimate, nonpaternalistic expression of respect for a patient's well-being.[77]
A line is crossed when one chooses to overrule the preferences of the patient or not even to evaluate what the patient's preferences are. The justification for overruling a patient's preferences—the claim that this is ethical—is usually explained in terms of “paternalism” (acting like a parent who makes decisions to protect a child). Paternalism is defined as a situation in which a clinician interferes with a person's autonomous decision (either by overriding it or by not inquiring about the person's preferences) in order to avoid harm and to promote the authentic welfare, happiness, needs, interests, or values of the person.[77,78]
Nondisclosure and paternalism are often confused, or the terms are used incorrectly. Nondisclosure may, or may not, be paternalistic. Nondisclosure at the request of the patient is not paternalistic since it does not contradict the patient's wishes; in contrast, fully disclosing a prognosis to a patient who does not want the information is paternalistic.
Soft paternalism
Physicians sometimes act against the preferences of a patient out of concern that the patient's expressed preferences may be inauthentic. Physicians may have good reasons to doubt the authenticity of the patient's expressed preferences when they suspect that the patient may not be competent (usually by virtue of either immaturity or mental illness) or when there is compelling evidence that the patient's decision has been coerced.[79,80] Acting against inauthentic preferences is called “soft paternalism.”[78,81] Judgments in these situations involve subjective deliberations. This is true for determinations of competence (such as in the case of a mature minor) and especially so for judgments that coercion has occurred.
When a patient's decision seems to be unduly influenced by the opinion of family members, it is often difficult to distinguish between legitimate persuasion by family members who have appealed to duty or reciprocity, and coercion (where threat is a defining feature).[80] In some relationships there may be an implicit or explicit threat of adverse emotional or relational consequences for noncompliance with the requests of relatives.
Consider, for example, what the implications would be if, in the introductory vignette about Mrs. K. M., that after a conversation with her husband in which he said “If you don't trust me to do the talking to the doctors, I will feel as if you have betrayed me,” she asks to cancel the scheduled meeting with the attending. For the care team, it would not be clear whether this change of heart represented an expression of filial responsibility or a response to the threat that she would be held responsible for her husband's sense of betrayal if she didn't comply with his wishes. When such concerns exist, it is useful and important to explore the circumstances of the decision with the patient to ensure that the decision does indeed reflect his or her current preferences.
Hard paternalism
In order to attain the best possible outcome for their patients who are competent and not coerced, sometimes physicians either do not seek their opinions or preferences, or they actively contravene patients' expressed preferences.[78,81] Hard paternalism aims to serve patients' interests by reducing potential harms or promoting their interests better than the decisions, or potential decisions, of the patients themselves.
The physician's privilege to act against a patient's authentic preferences (therapeutic privilege) is unique among the professions; it is based on four considerations[82,83]:
• Stewardship: this refers to the duty of physicians to intervene in a precautionary manner to prevent harm.
• The asymmetry of knowledge and judgment between the physician and the patient.
• Presumed physician integrity.
• The beneficent protection and promotion of authentic patient interests.
Either not asking patients about their preferences or acting against them can be a major, and, in some countries, a potentially sanctionable offense unless there is compelling and coherent justification. A potential justification should meet five criteria [81]:
(1) The patient must be at risk of a significant preventable harm.
(2) The paternalistic action will probably prevent that harm.
(3) The expected benefits outweigh the risks to the patient.
(4) Persuasion has failed, and there is no reasonable alternative to overriding the patient's autonomy.
(5) The approach that is taken is the least restrictive of the patient's autonomy.
Regarding paternalistic nondisclosure of diagnosis or prognosis: partial truths or partial concealment or generalities about the disease or its anticipated outcome are less restrictive of the patient's autonomy than untruths, avoidance, or concealment.
In practice, hard paternalism is relatively common[84-91] and probably more common than can be justified on the basis of the accepted criteria. Empiric data indicate that oncologists frequently choose not to disclose the limited likelihood or scope of benefits of proposed antitumor therapies in the setting of advanced cancer,[84-91] that many patients often receive less information than they want,[39,51,92] and that some patients are exposed to more information than they have requested.[39,93-97]
Different physicians have different thresholds for invoking the therapeutic privilege. Several factors may influence that threshold:
(1) The perceived importance of the obligation of precautionary intervention may be influenced by the expectations of the patient, demands or expectations of family members, the prevailing culture, local professional norms, or perceived professional role expectations. For example, in some settings cultural norms may support nonconfrontational and avoidance behaviors, and in some cultures authority figures are not expected to negotiate terms with persons in the relationship who are of lesser authority.[32]
(2) The appraisal of the likelihood of harm or of the severity of harm may be influenced by the skill of the physician (or lack thereof), evidence, experience, hearsay, or culturally relevant legend or metaphysical beliefs.[98,99] In some instances, cultural factors may amplify the perceived risk and likelihood of potential harms. This has been amply described in the care of Navajo patients, whose metaphysical belief system incorporates the notion that thoughts and fears can influence outcomes.[98,99]
(3) The appraisal of the harm caused by undermining patient autonomy may be influenced by cultural factors in cultures that place less emphasis on respecting individual preferences and more on the protection of the vulnerable.
(4) A physician may or may not have familiarity with, skill in, and availability for influencing a patient's preferences through other approaches, such as persuasion, values exploration, suggestion, or use of second opinions.[85]
(5) Physicians who lack preparedness and time for complex communication tasks may avoid them by taking unilateral paternalistic approaches such as not exploring patient preferences. This is particularly true for physicians who lack training in dealing with the emotional aspects of patient care, suffer from burnout, feel overburdened, lack time to devote to complex dialogues, or lack training and/or experience in dealing with end-of-life–related tasks.[85]
The therapeutic privilege either not to seek, or to contradict, patient preferences, is easily abused,[100,101] and it is incumbent on the mindful clinician to be prepared for challenging communication tasks and to develop the skills necessary to navigate them. These skills include empathic communication, disclosure of diagnostic and prognostic information in a stepwise and sensitive manner, ways of minimizing emotional responses, and approaches for coping with such responses when they do emerge.[1,102-104].
Conclusions
Difficult dialogues with patients facing life-changing decisions are an intrinsic part of oncologic practice and a major source of stress. Having a nuanced approach to the concepts of autonomy, paternalism, and culture helps in addressing difficult situations that arise around the issues of disclosure and decision making. Clinicians ought to be familiar with the concepts of relational autonomy and voluntary diminished autonomy, and with the implications of such concepts for care and especially for the consent process. When there is concern that a request for either too little or too much information may result in patient harm, and when the patient persists in the request despite efforts to persuade him or her of its unwiseness, in limited circumstances, and with substantial circumspection, either soft or hard paternalism may sometimes by justified. Ethical literacy regarding the issues involved in difficult communication problems is an important competency for medical oncologists and must be part of all training programs.
Acknowledgment: The author wishes to acknowledge Frank Ferris, Simon Wein, and Linda Emmanuel, who reviewed earlier drafts of the article and offered constructive suggestions for its development.
Financial Disclosure: The authors have no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.
