INFORMATION DISCLOSURE, ETHICAL ISSUES OF

Since 1970, ethically recommended healthcare practice in the United States has increasingly supported a high level of information disclosure to patients. This article reviews the change, notes some reasons for it, and explores several concerns about disclosure and its implications for particular information types.

Philosophical Background of Current Opinion

Generally, philosophical discussion has supported veracity as a moral principle, obligation, or virtue. Veracity draws its strength from the complex support it provides to diverse values—respecting others, avoiding coercion and manipulation, supporting community, maintaining reciprocity in relationships, supporting the value of communication generally, eliminating the costs and complexities of deception, refraining from unduly assuming responsibility, and maintaining trust.

Philosophers have generally treated veracity as an obligation flowing from more fundamental theoretical principles, such as utility, religious duty, respect for persons, or some combination of beneficence, fidelity, and autonomy. John Stuart Mill, for instance, regarded truth-telling as justified by utilitarian considerations, and W. D. Ross included honesty among the duties of fidelity. A few have given it more basic status. Some theologians, such as Dietrich Bonhoeffer, have set truth telling in the context of greater religious truths and treated false doctrines as forms of deception. Aristotle described falsehood as "in itself mean and culpable" (Bok, p. 24); G. J. Warnock listed veracity as a major virtue with the same status as beneficence and justice. Immanuel Kant and Augustine are notable for having defended truth-telling most strongly. In a brief article, Kant argued that it would be wrong to lie even to a murderer seeking the hiding place of an intended victim.

However, not all theorists have defended veracity; Henry Sidgwick denied that it could stand as a "definite moral axiom" because of its variable applications and numerous exceptions (Bok, p. 293). David Nyberg argued that trusting relationships among people normally require "the adroit management of deception" (Nyberg, p. 24). Moreover, most philosophers have defended deception in at least some cases. Plato defended lying to the public for the sake of society as a whole, and many philosophers have warranted deception when truthfulness might result in serious harm (Bok).

Application to Healthcare

Until the late twentieth century, philosophers often regarded a physician's withholding a fatal diagnosis from a patient as a stock exception to general precepts of veracity. Philosophers and physicians regarded the distress expected from such news as sufficiently harmful to outweigh the presumption favoring disclosure. Withholding a fatal diagnosis functioned as a paradigm for sharing other medical information with patients. The ethical tradition concerning the doctor-patient relationship thus tended, with some notable exceptions such as Worthington Hooker and Richard Cabot, to emphasize the obligations of confidentiality and to ignore and even deprecate disclosure (Radovsky). Oaths and codes omitted truth telling, and precepts and discussions of talking with patients tended to recommend caution in revealing information. Ethicists perceived the doctor-patient relationship as oriented to therapy, reassurance, and avoiding harm; physicians were to provide lies and truth instrumentally only insofar as they aided therapy.

Since the 1960s, opinion on the role of disclosure in healthcare has changed rapidly in the United States. The patients' rights movement and the rise of bioethics have created a climate of opinion supporting honest disclosure of medical information. The affirmation in 1972 of "A Patient's Bill of Rights" by the Board of Trustees of the American Hospital Association notably marked this shift in opinion. The bill stated, "The patient has the right to obtain from his physician complete current information concerning his diagnosis, treatment, and prognosis in terms the patient can be reasonably expected to understand" (Lee and Jacobs, p. 41).

These changes in opinion developed in concert with the spread of informed consent as standard practice in research and therapy. Informed consent derived from a view of respect for persons that emphasized an individual's power to make decisions adequately. This view required honest disclosure. Thus, most ethicists in the 1970s and 1980s supported fuller disclosure as a means of respecting patient autonomy (Katz).

The patients' rights movement favored empowering patients and increasing their control over medical care. As Howard Waitzkin argued in his observations of physicians' communications with patients, the traditional pattern of withholding information reflected a habit of dominating patients and keeping the course of therapy firmly under professional control (Waitzkin). Reformers saw a wider patient understanding of care as supporting a less paternalistic and more contractual relationship, as well as empowering particular classes of patients, such as women and people of color. Susan Sherwin, for example, identified one of the main tasks of feminist healthcare ethics as being to increase equity "by distributing the specialized knowledge on health matters in ways that allow persons maximum control over their own health" (Sherwin, p. 93).

The codes of ethics of the health professions began to reflect this important shift in opinion. The American Nurses' Association's Code for Nurses linked disclosure with truth-telling and self-determination: "Clients have the moral right … to be given accurate information, and all the information necessary for making informed judgments." The code counseled nurses to avoid "claims that are false, fraudulent, misleading, deceptive, or unfair" in their relations with the public (American Nurses' Association, p. 2). The 1980 revision of the American Medical Association's "Principles of Medical Ethics" included the principle, "A physician shall deal honestly with patients and colleagues, and strive to expose those physicians deficient in character or competence, or who engage in fraud or deception" (Council on Ethical and Judicial Affairs, p. ix). The American College of Physicians' (ACP) Ethics Manual recommended that patients be "well informed to make health care decisions and work intelligently in partnership with the physician." The manual advised that communication can "dispel uncertainty and fear and enhance healing and patient satisfaction." In general, the ACP held, "disclosure to patients is a fundamental ethical requirement" (p. 950). Subspecialty ethics codes— such as those of the American Academy of Orthopaedic Surgeons, the World Psychiatric Association, and the American College of Obstetricians and Gynecologists—also began to include recommendations supporting veracity.

Changing Contexts for Veracity in Healthcare

While a high level of disclosure became the recommended practice, cross-currents of thought emerged regarding the motivations for informing patients. First, observers discussed the psychological benefits and risks of giving patients bad news. Second, the increasingly institutional setting of healthcare practice influenced patterns of disclosure. Third, discussion distinguished the obligation to disclose information from the obligation to refrain from lying. Fourth, the uncertainty of medicine modulated the obligation to disclose. Finally, an increasing philosophical emphasis on relational aspects of practitioner-patient ethics broadened the foundations for veracity beyond the single element of respect for autonomy.

HEALTHY DISCLOSURE. Medical works prior to the 1970s tended to assume that revealing a fatal diagnosis would cause patients to experience painful emotions, commit suicide, refuse needed care, or give up hope and die more swiftly. In her important work Lying: Moral Choice in Public and Private Life, Sissela Bok argued that traditionalists exaggerated such problems. Patients generally want to be informed, and the benefits to a well-informed and cooperating patient outweigh the risks of disclosure (Bok). Others supplied case histories illustrating the emotional perils of withholding a terminal diagnosis from vulnerable and trusting patients (Dunbar; Sherwin).

Elisabeth Kübler-Ross provided crucial support for the psychological benefits of disclosure by her research on the emotional processes of coming to terms with expected death. In extensive interviews with dying cancer patients, she observed that patients' initial negativity was normally followed by a staged sequence of feelings resolving in acceptance with hope. She regarded disclosure as part of the healthy process of maintaining ongoing communication with dying patients, and her stage theory permitted clinicians to engage in a therapeutic process around disclosure of a fatal diagnosis. The hospice movement accepted this perspective as key to humane care of the dying. Kübler-Ross nevertheless strongly opposed disclosing detailed predictions of life expectancy.

Patients' powerful emotional reactions and personal transformations during grave illnesses involve caregivers in intimate, significant connections with patients. The belief that knowledge of death is healthy has changed the image of the clinician from that of maintaining a cool distance to one of performing emotional work with patients (Hochschild). Ethicists often suggested that health professionals who withheld information from patients reflected several concerns: denial of their own and the patient's fear of dying, unconscious wishes to foster dependency in their clients, concern that discussing death constituted admitting failure, and manipulation of hope to encourage more extensive treatment choices.

Some commentators have challenged the positive emotional benefits of discussing death. Ernest Becker argued that the fear of death is too powerfully terrifying to permit most people to accept it (Becker). Some studies have found at least a few patients showing regret over being informed (Temmerman). Others have criticized the cold delivery of information, the image of the physician "bearing down" on the patient with bad news (Byrne). But in most of the literature, the question has become not whether to tell but how to tell; sharing bad news involves timing and a commitment to continuing empathy, compassion, reassurance, and conversation (Buckman and Kason; Kessel; Kübler-Ross; Radovsky).

THE INSTITUTIONAL CONTEXT. Expanding healthcare delivery organizations and complex technologies have multiplied the number of personnel providing patient care. These changes have magnified the obstacles to easily orchestrated and effective deception; a physician must not only deceive the patient and family but also involve dozens of other staff in the process. Institutional growth has also increased the need for accurate recordkeeping to cope with the expanding quantity of information.

Although information flow to patients has traditionally been the responsibility of physicians, other healthcare team members spend more time with patients, have the knowledge and opportunity to disclose information to patients and their families, and belong to professions assuming responsibility for educating patients. Coordinating communication has become an organizational challenge as hospital staffing has become more efficient, patient acuity greater, and lengths of stay shorter (Zussman). Who should talk with the patient when the physician is absent poses ethical questions for staff members, who may feel reluctant to provide information without explicit delegation even though disclosure may be timely for the patient. Nurses experience ethical conflicts when physicians order them to withhold information to which patients are entitled (Chadwick and Tadd). Staff members may make promises to patients and their families about disclosure, promises that other staff members cannot keep.

Legally, the information in the hospital record belongs to the patient (Annas), but patients are not employees, and so patients' rights are hard to define procedurally. Patients' responsibility to provide honest disclosure to healthcare staff similarly lacks explicit definition. Thus, although large healthcare institutions have fostered a need for improved communication with patients and made systematic deception difficult, smoothing the flow of appropriate information to patients presents a daunting institutional task.

DISCLOSURE AND DECEPTION. The principle of veracity suffers ambiguity; it may simply prohibit lying and deception, or it may express a broader obligation to disclose information. Ethicists have tended to deploy arguments against lying and deception to support a high level of disclosure in healthcare, because lying and deception have often accompanied withholding information in maintaining illusory hopes. But, one can avoid lies and deception and yet disclose scant information. Since the obligation of full disclosure is role-dependent, supporting it involves considerations beyond criticizing deception. Arguments for full disclosure require normative arguments concerning appropriate relationships of healthcare professionals and institutions to patients in their service.

In healthcare, the principle of full disclosure stands in a reciprocal relationship to the obligation to keep confidentiality. Clinicians often have an obligation to disclose information to the patient, and at the same time, keep the same information from others. Moral judgment requires appreciating the range of application of both principles, that is, knowing which information should be disclosed or withheld in what circumstances (Jonsen and Toulmin). The more formal arguments justifying disclosure parallel the arguments for informed consent by appealing to autonomy, but broader notions of serving patient psychological good and building relationships provide less clear guidance as to the full extent of disclosure. Although favoring disclosure of a fatal diagnosis, as the worst possible news, has tended to encourage wide disclosure of less frightening information, it is still unclear what patients should or should not be told about hospital procedures, student participation in procedures, financial information, names of manufacturers, opinions on the skills of clinicians, personal information about practitioners, mistakes, and so on.

DOUBTS AND UNCERTAINTIES. The phrase "information disclosure" connotes a level of certainty absent from many diagnoses, prognoses, and therapeutic options. Do guesses and projections belong to the patient as much as the contents of the case record? Kathryn Taylor observed that physicians diagnosing cancer often exaggerate their uncertainty in order to soften the blow of a diagnosis or suppress it in order to hide feelings of doubt (Taylor). Physicians diagnosing symptoms often consider unlikely possibilities, which would frighten patients if shared unnecessarily with them. Nurses may discover or obtain information about which they are uncertain or lack authority to know and wonder whether or not to share it with patients.

Prevailing uncertainty has motivated some physicians to argue that the truth is so uncertain and variable that veracity is irrelevant to patient care. They argue that prospects and options can be framed in so many ways that clinicians inevitably control patient decisions. Even in the relatively well-studied area of informed consent, what to tell about unlikely dangers remains a contested area. Although some physicians have chosen to limit disclosure on the grounds of uncertainty, David Hilfiker characterized giving false reassurances and concealing uncertainty as forms of dishonest misrepresentation.

BUILDING RELATIONSHIPS. Although bioethics in the 1970s and 1980s rooted disclosure in autonomous decision making, the practice of disclosure has become so widespread in the United States that it has received support on broader grounds. Feminist ethics began to shift the basis of philosophical discussion from the language of autonomy to the language of caring and community. This trend, by diminishing the use of rights language, might have relaxed the new emphasis on disclosure; however, the trend expanded grounds for it, and a conception of the practitioner-patient relationship developed that sees disclosure as a key element in a good professional-patient relationship, apart from its role in decision making.

Lorraine Code, for instance, noted that there is "no stark dichotomy between interdependence and autonomy"(p. 74). Howard Brody recommended that as part of the ongoing "conversation" between physicians and patients, physicians should "think out loud" (Brody, p. 116) in order to share medical reasoning more fully with patients. Charles Lidz and his colleagues found that patients generally wanted procedures explained to them, not to participate in decision making, but as a sign of respect and to assist in therapy. Annette Baier advocated the necessity of going beyond the contract model and of appreciating disclosure in a context in which power relationships are unequal. Baier emphasized trust in relationships as a priority over decision making. Trust thrives most readily in relationships free of deception and where good mutual communication maintains connections between people.

Specific Concerns in Disclosure

Although terminal diagnoses have served as the paradigm for exploring disclosure, they cover only a portion of the possible concerns involving communication with patients. This section briefly describes a few of the other concerns. Many can arise, such as using placebos; therapeutic privilege; giving patients information about the costs of care; disclosing brain death to the family; lying to an insurance company to obtain coverage for a treatment or diagnostic test; falsifying records to help patients escape war service or school busing; reporting an accidentally discovered serious condition to the patient when the doctor-patient relationship is undefined; offering information to patients concerning futile therapeutic options; deceptively introducing medical students to patients as doctor; concealing the histocompatibility (mutual tolerance of tissues or organs to be grafted) of an unwilling potential organ donor; revealing to patients that a caregiver has tested positive for the human immunodeficiency virus (HIV); revealing HIV diagnoses to patients; encouraging patients to disclose HIV diagnoses to sexual partners; communicating psychiatric interpretations to patients; expecting disclosure by patients to health professionals; and disclosing genetic information to patients.

DISEASES LACKING EFFECTIVE TREATMENT. When a diagnostic test can predict a dread and incurable disease— such as Huntington or Alzheimer's disease—some physicians consider the possibility of withholding the diagnosis. An instrumental view of communication tends to support the view that the burden to the patient of knowing outweighs the value of disclosure. This concern arose with regard to Huntington disease when a levodopa test became available in the early 1970s; the concern was renewed when genetic marker tests became available in 1983. Although some critics continued to express reservations, genetic counselors tended to find that disclosure helped both patient and family to make long-range plans. Gwen Terrenoire emphasized that a consensus favoring testing and disclosure resulted from counselors working with organized patient groups involved with Huntington disease (Terrenoire). In 1989, the Huntington Disease Society of America published guidelines for testing for the condition. They recommended counseling patients prior to the screening decision and before disclosing results. They also recommended against screening patients who have conditions that diminish judgment, while thoroughly evaluating them for suicide risk (DeGrazia).

DISCLOSING DIAGNOSTIC TESTS. Hospitals and clinics often screen patients upon admission for a wide range of conditions without informing them of the reasons for testing. Services may standardly screen for HIV, sexually transmitted diseases, or pregnancy without informing the patient. They may also wish to make surreptitious tests when they believe a patient is claiming false symptoms. One case study described a patient as suffering from mysterious bruising, which could most probably be explained by drug abuse; she denied taking drugs and refused to permit a blood test. Physicians considered whether to administer the diagnostic test without informing her of its purpose. The discussants of the case argued that a contractual model of the doctor-patient relationship is inadequate because patients frequently lie to physicians and are poor historians. They suggested also that such tests need not be disclosed since they yield such diverse results; they are often based on guesses; and their interpretation depends on patient histories (Vanderpool and Weiss).

REVEALING MISTAKES TO PATIENTS. Surely, practitioners should tell patients of mistakes pertinent to their welfare or requiring changes in treatment plans. However, the possibility of lawsuits, the fear of losing patient confidence, painful feelings of incompetence, and solidarity between healthcare team members often outweigh patient benefits in frankness regarding errors. Charles Bosk observed that discussion of medical errors tends to be highly ritualized, confined to well-defined hospital subgroups, and used to reaffirm a strong collective sense of competence. Hilfiker, however, in a remarkably frank discussion of his own errors, recommended that patients can be accepting of physician limitations, that maintenance of illusions about competence tends ultimately to undermine trust in physicians, and that hiding mistakes tends to alienate caregivers from the healing process of confessing and handling mistakes. The ACP Ethics Manual also recommends disclosing significant "procedural or judgment errors" (American College of Physicians, p. 950).

PATIENT REFUSAL OF INFORMATION. The bioethics literature has debated the proper handling of patient refusals of information (Ost; Strasser). On the one hand, the literature usually has regarded refusing information as an autonomous choice and therefore has supported it: A caregiver may ethically choose to respect a patient's wish to rely more heavily on the caregiver. Raanan Gillon argued that "forcing" information on a patient is both harmful and disrespectful of autonomy. The issue can also be regarded as a feature of relational style; Edmund Pellegrino noted that "some patients need a more authoritative approach than others" (p. 1735).

On the other hand, autonomy is not the only basis for disclosure; caregivers have some role-dependent duties to disclose information to the reluctant; and patients have responsibilities as well as rights to use information on their own behalf. Some information may be so surprising and crucial for patients or so necessary for a working partnership that caregivers have an obligation to disclose despite patient protests. Caregivers may feel that a patient's denial is slowing recovery, or that patients may have a duty to act on information, such as that they are HIV-positive, in order to protect others. It is thus doubtful that the question of refusals can be answered generally.

DISCLOSURE TO FAMILY MEMBERS. Kübler-Ross suggested entrusting some information to family members rather than the patient; this has also been the pattern reported in several countries, such as Hungary, Italy, Japan, and China. This approach may result from seeing the patient as "an extension of the family" (Christakis and Fox, p. 1101), respecting the family as a strongly interdependent unit, or wishing others to carry the burden of knowledge. Yoshitomo Takahashi reported that some Japanese practitioners consider talking about death as threatening family relationships and separating the patient from others (Takahashi), and Eric Feldman noted that many Japanese practitioners perceive disclosing terminal diagnoses as "a callous practice"(p. 21). However, supporters of patient autonomy have expressed concern that leaving the patient uninformed is more likely to isolate the patient psychologically (Quill and Townsend). From both perspectives, the main concern appears to be to include the dying patient in the community, but it is difficult to make reliable cross-cultural generalizations because recommended practices, actual practices, and patient attitudes often vary widely within each culture.

Difficult questions balancing disclosure and confidentiality arise in keeping family members appropriately informed along with the patient. The family may be the recipient of disclosure when an unconscious patient is admitted to the hospital; when the patient recovers competency, the pattern of leaving the family in charge may continue or the family may become excluded from communication. Or family members may give clinicians important information about the patient and ask that the patient not be told; however, the ACP Ethics Manual holds that practitioners are "not obliged" to keep such secrets and should "use sensitivity and judgment" in disclosing such information (American College of Physicians, p. 949).

DISCLOSURE IN THE SOCIAL ARENA. Although bioethical discussion has focused primarily on disclosure and honesty at the bedside, similar issues arise in the larger healthcare arena. For instance, a study of advertising in medical journals showed that a high proportion of pharmaceutical advertisements failed to meet U.S. Food and Drug Administration standards for honesty (Wilkes et al.). Many physicians rely on advertisements and pharmaceutical representatives for their information. Consequently, deceiving physicians leads to misinformed patients.

Occupational and public-health physicians face conflicts affecting disclosure. For instance, some clinicians and medical researchers cooperated for many years in industry suppression of information on the carcinogenicity of asbestos (Lilienfeld); other health professionals have been active in political struggles over posting health warnings on cigarette and alcohol labels. In recent years, the U.S. Occupational Safety and Health Administration has expanded workers' rights to know about their exposure to toxic materials in the workplace, although the complexity of state and federal regulations makes application difficult. Pressures arising from fear of litigation, protection of trade secrets, and concern for individual confidentiality create tensions in pursuing public-health goals of improving public health by keeping workers and the public better informed of their exposure (Ashford and Caldart).

Conclusion

Beneath this sketch of disclosure lie a number of ethical concerns of great subtlety and depth. Brief reflection on honesty links veracity primarily to telling others what one believes. But the complex interactions between clinicians and patients require clinicians to consider carefully how patients interpret their words; skill in listening to patients has often been identified as the key element in effective patient teaching. Moreover, health professionals bear serious duties to service and science that require them to examine honestly the limits of their knowledge, the help they can promise, and their insights into the meanings of illness and death. Thus, accepting honest disclosure calls upon professionals to reflect deeply on the relationship of medical science to health, the consequences of individual service to public health, and the impact of healthcare institutions and practices on the public's understanding of health, illness, and death.

andrew jameton (1995)

bibliography revised

SEE ALSO: Advance Directives and Advance Care Planning; Autonomy; Coercion; Competence; Freedom and Free Will; Genetic Testing and Screening; Human Dignity; Human Rights; Informed Consent: Meaning and Elements; Pastoral Care and Healthcare Chaplaincy; Patients' Rights; Professional-Patient Relationship

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