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Medical Ethics

Commentary: Disclosure in Oncology—To Whom Does the Truth Belong?

^aUniversity of North Carolina at Chapel Hill, Lineberger Comprehensive Cancer Center, Division of Hematology and Oncology, Chapel Hill, North Carolina, USA; ^bMemorial Sloan Kettering Cancer Center, New York, New York, USA

Key Words. Clinical ethics • Medical oncology • Personal autonomy • Psychology

Correspondence: William A. Wood, M.D., M.P.H., University of North Carolina at Chapel Hill, Lineberger Comprehensive Cancer Center, Division of Hematology and Oncology; Campus Box 7305, 3rd Floor, Physicians' Office Building, 170 Manning Drive, Chapel Hill, North Carolina 27599-7305, USA. Telephone: 919-843-7717; Fax: 919-966-6735; e-mail: wwood{at}unch.unc.edu

Received July 24, 2008; accepted for publication December 9, 2008; first published online in THE ONCOLOGIST Express on January 15, 2009.

Disclosures

William A. Wood: None; Mary S. McCabe: Consultant/advisory role: Lance Armstrong Foundation; Research funding/contracted research: Lance Armstrong Foundation; Richard M. Goldberg: Consultant/advisory role: American Society of Clinical Oncology, Cancer and Leukemia Group B

Section editor Rebecca D. Pentz has disclosed no financial relationships relevant to the content of this article.

The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias.

Target audience: Physicians who wish to advance their current knowledge of clinical cancer medicine in risk management.

	Learning Objectives

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 

1. Summarize the meaning of the term "therapeutic nondisclosure" in the context of medical oncology practice.
   
2. Classify the reasons for variations in disclosure practices around the world.
   
3. Develop strategies for approaching a conversation about disclosure that respects the rights and needs of the patient and family.
   

	ABSTRACT

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
The term "therapeutic nondisclosure" refers to a clinician's decision to withhold diagnostic or prognostic information from a patient to protect him or her from perceived harm. We present a vignette in which the son of a 75-year-old Italian born immigrant asks her physician to withhold her new diagnosis of advanced myeloma. In the U.S., trends over the last 30 years have been toward more complete disclosure of cancer-related information. This can be attributed to the evolution of research subject protections, the "war on cancer," the civil rights and patient rights movements, and the rise of hospice and palliative care. In other parts of the world, however, therapeutic nondisclosure is still commonly practiced. Here, we deconstruct and call into question current arguments for nondisclosure. We provide practical recommendations to the practicing clinician in the U.S. who wishes to approach a request for nondisclosure, and disclosure itself, in a compassionate and respectful way.

	INTRODUCTION

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
In the midst of a packed clinic you have a new patient, Mrs. T. She is a 75-year-old Italian born immigrant who has lived in the U.S. since age 60 referred for an "abnormal serum protein electrophoresis (SPEP)." Complaints of fatigue and diffuse aches led her primary care physician to order an SPEP that detected a monoclonal protein of 8 g/dl. A skeletal survey done just prior to her visit revealed numerous bony lucencies including several that bridge from cortex to cortex in both femurs. As you prepare to enter Mrs. T's room, an anxious man steps forward, introduces himself to you as her son, and asks to discuss her case with you. He wants to know if she has "some kind of cancer" because the clinic is in a cancer hospital. Elaborating further, he says that "if my mother has cancer, she can't handle that kind of news, so can you please keep that between us?"

	WHAT IS THERAPEUTIC NONDISCLOSURE?

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
The request made by the patient's son is one that a typical U.S. oncologist will likely encounter during the course of his or her practice. Disclosure of a cancer diagnosis and prognosis has not always been the norm in the U.S. The term "therapeutic privilege" traditionally refers to a situation in which a physician withholds information from a patient because there is thought to be sufficient evidence that the patient would be psychiatrically or emotionally unable to handle such information. Here, we use the term "therapeutic nondisclosure" to refer to the act of withholding information related to a cancer diagnosis or prognosis for a broader range of reasons that also includes cultural concerns. In certain situations, some oncologists have felt that the very act of disclosure might take away a patient's hope and will to live, or might be considered culturally unacceptable [1]. In the past, disclosure has been offered instead to a patient's family member, if at all [2].

	WHY WE DISCLOSE IN THE U.S.

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
At some point in the 1960s or 1970s, disclosure became more common in clinical practice in the U.S. [3]. This trend has become more apparent in the ensuing decades, and the duty to disclose has now become formally codified in written ethical guidelines [4] and informally grounded in contemporary Western biomedical ethics [5].

Key to this change was the recognition of historical atrocities visited upon coerced "subjects" in the "research" setting, as in the concentration camps of Nazi Germany and the syphilis natural history studies in the U.S. After the exposure of these events, the medical and research community formalized the rights of subjects in the Helsinki Declaration and other statements [6, 7]. Many subsequently argued that patients in routine clinical practice are in similar positions of vulnerability and have similar rights [8]. For example, the balance of power differential between a clinician and patient, in terms of knowledge and reliance for care, may be similar to that between an investigator and research subject. Rules for informed consent have been developed in certain clinical settings that are similar to those used in research. There may also be situations within clinical practice in which there are simultaneous research and treatment goals, either within or outside the setting of a formal study. In parallel to developments in clinical ethics, evolving social movements in the U.S. led to civil rights for women and African Americans. Most recently a "bill of rights" for medical patients was debated in Congress [9].

An important evolution in biomedical research and care priorities in the U.S. was the declaration of war on cancer in the 1970s by President Richard Nixon [10]. As time passed, we began to learn more about how to treat incurable disease. With knowledge came demystification; though the word "cancer" was once a generic representation of certain death (and still may seem so [11]), scientists have since classified the disease into several subtypes, each carrying different prognoses and treatment plans. In some cases, as in pediatric acute lymphoblastic leukemia, cure has been possible. In others, treatment has improved the survival time and quality of life.

The rise of hospice and palliative care in the 1980s and beyond [12] has provided patients with comfort and dignity while avoiding abandonment when cure was no longer possible. Medical educators have realized that physicians are uncomfortable discussing diagnoses and prognoses because they do not feel equipped with adequate communication skills and techniques. Accordingly, they have emphasized communication skills in undergraduate and postgraduate medical education [13, 14]. Physicians now have something to describe, something to offer, and a way to talk about it.

For all these reasons, disclosure of diagnosis (and to a lesser extent prognosis) has become the norm in the U.S. The duty to disclose is described in a recently published report from the Council for Ethical and Judicial Affairs of the American Medical Association [4]. Additionally, contemporary Western biomedical ethics provides a moral grounding for this duty. Major principles include nonmaleficence (avoiding harm), beneficence (promoting the best interests of the patient), autonomy (emphasizing respect for the individual), and justice (providing equity). These principles can come in conflict with one another and may be accorded relative weights in different situations. Autonomy specifically comes from the Greek auto ("self") and nomos ("rule" or "governance") and mandates respect for the patient as an independent actor who has the right to information and to the opportunity to make his or her own medical decisions [15].

Changes in disclosure practices in the U.S. may be viewed as part of the movement toward patient autonomy in clinical medicine. In general, "doctor knows best" has been replaced by shared decision making in which the patient and physician enter a true partnership. Some may argue that this shift has gone too far [16], but the concept of equal partnership has a significant bearing on current medical practice. Many Western ethicists and physicians now feel that disclosing information protects the autonomy of patients who need this information for decision making. For example, disclosure may make it easier for patients to be participants in treatment decisions, many of which have potentially unacceptable risks. Enrollment in clinical trials is not possible without the provision of formal informed consent, which is difficult when the diagnosis has not been disclosed. As well, with additional information, patients have the ability to refuse ongoing treatment or research.

Nonetheless, the principle of beneficence can also be used to justify disclosure. What benefits come to the patient who learns about his or her cancer diagnosis and prognosis? In the event of a poor prognosis, the patient may need to know in order to take care of unfinished business by arranging finances, healing relationships, or performing other actions that may give a sense of completion to his or her life's work [17]. Full disclosure may allow a patient to achieve other important practical or existential goals for his or her remaining life [18]. In general, truthfulness in a physician–patient relationship has been described as a key element of trust. If a patient later learns that a physician has been deceptive in withholding information about a diagnosis or prognosis, this trust may be irreversibly damaged [19]. In practice, it is difficult to withhold information about a diagnosis over the long run ("closed awareness") [20], because a patient can find out this information inadvertently from family, friends, or other health care providers, or by inferring this from the location and setting in which health care is being delivered (such as a cancer clinic or hospital).

There are still limited circumstances in which exceptions to disclosure are typically made in the U.S. [21]. A subject may lack the capacity to make medical decisions (although a more limited form of disclosure is typically still made in this setting) or a subject may be reasonably believed to be in grave danger of severe harm to self or others if information is disclosed. This justification falls under the traditional heading of therapeutic privilege. As well, patients are allowed to actively use their autonomy to defer disclosure to friends or family members if they state that they do not wish to know this information [22].

	IS DISCLOSURE A UNIVERSAL PRACTICE?

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
Evidence indicates that disclosure is a largely Western practice and is exceptional in many parts of the world. This has been demonstrated in the Far East [23], the Arab world [24], Southern Europe [25], and the developing world [26]. Information in these settings is disclosed to the family, which then decides whether or not the patient should know. Interestingly, patients and families from other parts of the world may have similar expectations when they come to the U.S. [27]. The observed differences in disclosure practices are often ascribed generically to "culture." The dominant principle of respect for persons that underlies the concept of autonomy is sometimes extended to include respect for cultures. Some argue that "cultural" family requests for nondisclosure in the U.S. should be followed to demonstrate culturally competent, respectful care.

The reasons behind nondisclosure practices in different parts of the world are as diverse as the peoples and cultures within them. In some areas of the Far East, the family unit is the primary point of reference for social interaction, and it is natural and fitting to discuss a grave diagnosis with the family first [28]. Authors have described the influence of Confucian ethics in this setting [29], and some argue that the principles of beneficence and autonomy are not relevant to clinical ethics there [30]. In other cultures, different ethics apply. One analysis of ancient Hebrew directives suggests that these justified clinical deception when appropriate to avoid infliction of psychological distress [31]. This more closely resembles the nonmaleficence argument for nondisclosure in the U.S.

In other parts of the world, disclosure is avoided for quite different reasons. One study from Tanzania describes the limited options for cancer treatment in that setting and notes that futile journeys across the country in search of treatment of questionable value can inflict financial and emotional devastation upon affected patients and their families [26].

	PROBLEMS WITH THE CULTURAL ARGUMENT

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
Attaching unquestioned priority to nondisclosure requests because of "cultural differences" may be inappropriate.

First, there is no guarantee that a request for nondisclosure is culturally motivated. Such arguments usually assume that families are acting in patients' best interests, and that families are equipped to provide emotional and financial support to the patient who is kept in the dark. However, neither may be the case; families from any environment (including the U.S.) may be acting in their own, rather than the patient's, best interests.

Second, nondisclosure is justified for different reasons in different places. The reasons for nondisclosure in a given environment may have less to do with ethics and more to do with unique social and historical circumstances. For example, we have seen how disclosure practices in the U.S. changed in response to historical events, social movements, and emerging technologies. There is evidence that similar changes are afoot in other industrialized countries such as in areas of Europe and Japan [32], where changes in disclosure patterns mirror, but have lagged behind, trends in the U.S. With the worldwide availability of curative treatments, hospice, and palliative care, practices might change in other locations as well. Additionally, attitudes are not homogeneous within cultures. Expectations for and practices of disclosure can vary by locale (urban versus rural) [32] and by level of education [33]. It is also possible that the families of patients from other countries who are living in the U.S. may have expectations that are actually inconsistent with evolving practices in their former countries.

Third, health care providers in other areas of the world have said in surveys that they would want to know their own diagnoses if afflicted with cancer [34]. However, providers [35, 36] and patients' families [37] underestimate the degree to which patients want to know this information. Patients who are kept from their diagnoses may suffer more psychological distress than other patients, which runs counter to an argument often used to justify nondisclosure [38]. Providers in other parts of the world have indicated that they wish that they had more training in communication skills for difficult conversations [39]. These observations raise the possibility that nondisclosure in other parts of the world can be inconsistent with what patients want to hear and with what providers believe personally. Nondisclosure may, in part, result from family pressure or difficulties in provider–patient communication. Because providers may have significant anxiety secondary to lack of proper training in approaching or embarking upon difficult discussions with patients, they may choose to avoid these conversations.

	PRACTICAL RECOMMENDATIONS FOR DAILY PRACTICE

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
It is our belief that current ethical opinion in the U.S. mandates an offering of disclosure to patients with new cancer diagnoses. We believe that respect for patient autonomy supports this, and that the cultural argument for nondisclosure is inherently problematic. However, patients' families will sometimes request nondisclosure, and these requests will, in part, be based upon familiar customs and practices in other countries. To maintain therapeutic partnerships with patients and families, and to respect other traditions and other practices, we believe that the following guidelines may prove useful when the practicing clinician is confronted with such a request.

1. Although respect for patient autonomy mandates an offering of disclosure, a patient can exercise autonomy by deferring disclosure to family members. Though it may seem difficult to obtain "consent" for disclosure without revealing the nature of the bad news, it is possible to do so when the conversation is approached with appropriate care and sensitivity. There are examples in the literature of appropriate techniques in such situations. One oncologist suggests a conversation opener like this: "I understand in your family that the details regarding your medical condition and care usually are discussed and decided on by the family. Is this the way you would like me to handle things?' [40]. In appropriate circumstances, the clinician may wish to add, "Or, would you prefer instead that I discuss this information with you alone or with you and your family together?" Through the conversation, the physician should emphasize that: (a) the standard of practice in the U.S. requires that patients are offered the opportunity to learn about their diagnoses, but (b) patients are allowed to defer this information to family members if they choose to do so.
   
2. When approaching difficult conversations with patients and families who may be from other cultures or who may speak other languages, it is helpful to have a translator available who can serve as a cultural translator in addition to his or her role as a language translator. Particularly in these situations is it suboptimal to use family members to translate. An official translator can ensure that the appropriate information is conveyed, and may help to enhance sensitivity to specific cultural concerns.
   
3. Some patients may not be emotionally ready to handle difficult information right away. The difficult conversation of "breaking bad news" can be split into its component parts of diagnosis and prognosis, and in certain situations a useful strategy may be to disclose this information in a graduated fashion over a series of visits, as the patient becomes more ready to hear the information [41, 42].
   
4. Good communication skills are an important part of patient and family satisfaction with disclosure [43]. Some skills are verbal, and some are nonverbal. Some have to do with the way in which a physical setting is created for appropriate disclosure, such as a quiet room, free from interruption, where space is available for all appropriate parties to participate in the conversation. These skills are teachable [44] and can be reinforced with the use of simple techniques and mnemonics, such as SPIKES—Setup, Perception, Invitation, Knowledge, Empathize, Summarize and strategize—for giving bad news [45] and NURSE—Naming, Understanding, Respecting, Supporting, Exploring—for responding to and accepting patient emotions [46].
   
5. A key premise behind the argument for nondisclosure in the U.S. has been that disclosing a cancer patient's diagnosis may take away that patient's hope and will to live. It may be helpful for the physician who approaches disclosure to reorient the conversation toward a new set of authentic and realistic hopes [18]. In some cases, the patient can hope for a longer life or hope to eventually be free from cancer. In other cases, the patient might hope to be free from pain or hope to achieve certain concrete near-term objectives [47]. In this way, the compassionate clinician can demonstrate that there are still "things to be done" and "goals to hope for," and that the patient will never be abandoned.
   

	CONCLUDING THOUGHTS

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
We hope that this discussion has provided a framework to think about and approach a request for nondisclosure. Looking back at our original vignette, we can see now that an appropriate response would be for the clinician to negotiate with Mrs. T's son to offer disclosure to Mrs. T in a compassionate and "culturally competent" [48] way. The clinician could assure Mrs. T's son that his viewpoint is respected, but that ethical standards in the U.S. require an assessment of Mrs. T's interest in being told about potentially difficult information. With the assurance provided that only an assessment of attitude toward disclosure would be undertaken, rather than disclosure itself, Mrs. T's son could be invited to a discussion between the clinician and Mrs. T in the presence of a language and cultural translator in a proper place and setting. Mrs. T's son's reluctance toward disclosure may stem from his own apprehension or anxiety about handling his mother's perceived distress, so the clinician could help to address this by offering assistance in caring for any emotional difficulties that might result. Handled appropriately, such a conversation might lead to a deepening therapeutic relationship among the physician, patient, and family that would benefit Mrs. T's future care.

	AUTHOR CONTRIBUTIONS

Top Learning Objectives Abstract Introduction What Is Therapeutic... Why We Disclose in... Is Disclosure a Universal... Problems with the Cultural... Practical Recommendations for... Concluding Thoughts Author Contributions References

 
Conception/design: William A. Wood, Mary S. McCabe, Richard M. Goldberg

Collection/assembly of data: William A. Wood, Mary S. McCabe

Manuscript writing: William A. Wood, Mary S. McCabe, Richard M. Goldberg

Final approval of manuscript: William A. Wood, Mary S. McCabe, Richard M. Goldberg

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This Article Abstract Full Text (PDF) All Versions of this Article: theoncologist.2008-0158v1 14/1/77    most recent eLetters: Submit a response to this article Purchase Article View Shopping Cart Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Citation Map Services E-mail this article link to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Reprints/Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Wood, W. A. Articles by Goldberg, R. M. Search for Related Content PubMed PubMed Citation Articles by Wood, W. A. Articles by Goldberg, R. M.