Confidentiality of Mental
Health Information: Ethical, Legal,
and Policy Issues
- Effective psychotherapy. . . depends upon an atmosphere of confidence and trust in which the patient is willing to make a frank and complete disclosure of facts, emotions, memories, and fears. Because of the sensitive nature of the problems for which individuals consult psychotherapists, disclosure of confidential communications made during counseling sessions may cause embarrassment or disgrace. For this reason, the mere possibility of disclosure may impede development of the confidential relationship necessary for successful treatment.
This ringing endorsement of the importance of confidentiality in the provision of mental health treatment comes from the U.S. Supreme Court (Jaffee v. Redmond, 1996). The Court’s language, in a decision creating a psychotherapist privilege in Federal court, appears to leave little doubt that there is broad legal protection for the principle of confidentiality. Public opinion polls also show widespread support for the privacy of health care information: 85 percent of those responding to one survey characterized protecting the privacy of medical records as essential or very important (Peck, 1994).
Yet the reality is much more complex. State and Federal laws do protect the confidentiality of health care information, including information created in providing mental health and substance abuse treatment. However, these laws have numerous exceptions, are inconsistent from state to state, and, in the opinion of many experts, provide less protection of confidentiality than is warranted.
In addition, changes in the health care industry, and advances in technology, have created new concerns regarding the privacy of health care information. Health care increasingly is delivered and paid for by for-profit corporations with business in many states. This shift has several relevant consequences. First, individual health care information may be held and disseminated far beyond the office of the practitioner providing care. Second, cost containment concerns have resulted in the emergence of a variety of techniques that depend on third-party review of a practitioner’s judgment that an individual should receive care, reviews that have resulted in increased demands for patient-specific information before care is approved. In addition, private health care information may be distributed for the purpose of marketing commercial products, such as pharmaceuticals, a growing business that many believe constitutes an improper use of such information (Jeffords, 1997; O’Harrow, 1998). Finally, private health information is used to create much larger databases, for various purposes including treatment and research, thereby increasing the number of people with access to such information.
Technology also has emerged as a major issue in privacy debates. The ultimate impact of technology is not yet clear. One leading expert on the privacy of health care information asked whether technology would help or hinder the protection of health care privacy, responded that the answer was yes and no (Gellman, in press). On the one hand, new technologies can support, and in some cases make possible, the changes that have transformed the health care industry. The“health information technology industry” in 1997 sold approximately $15 billion of products to health care organizations, including medical business decision-support software, data warehousing, clinical expert systems, and electronic medical record systems designed to support large health care enterprises (Kleinke, 1998). There also have been ongoing efforts to create computer-based patient records for several years (Dick & Stean, 1991). Such records in many ways can be more secure than paper records through various mechanisms, for example, by restricting access to designated users. Yet much of the same technology raises concerns about privacy, because of its capacity to store and disseminate rapidly to multiple users personal information that many individuals would prefer remain private. If the myriad needs of the health care system could be met by using only data stripped of patient-specific information, many concerns about privacy might be ameliorated. However, data that identify the individual are still considered necessary for many purposes, including the administration of payment systems and fraud investigations. This has led some to conclude that the ultimate question when patient-specific data are transported and used outside of the clinical context is security of the data (Moran, 1998).
Congress, in an effort to respond to growing public concern over health care information privacy, has committed the Federal government to the creation of a national confidentiality standard by 2000. Congress also has directed the Secretary of Health and Human Services to produce recommendations for simplifying and standardizing requirements for the electronic transmission of health information (Health Insurance Portability and Accountability Act, 1996). The purpose is to improve the effectiveness and efficiency of the health care system (Gellman, 2000). It is not yet clear, given the complexities of the issues, that the deadline for a national privacy standard will be met. However, it is clear that the confidentiality of health care information has emerged as a core issue in recent years, as concerns regarding the accessibility of health care information and its uses have risen.
This section of the report discusses the values underlying confidentiality, its importance in individual decisions to seek mental health treatment, the legal framework governing confidentiality and potential problems with that framework, and policy issues that must be addressed by those concerned with the confidentiality of mental health and substance abuse information. Although the current debate regarding Federal standards is not presented in great detail, it is referred to when appropriate to provide context for the broader discussion.
Ethical Issues About Confidentiality
Each profession that provides mental health treatment embraces confidentiality as a core ethical principle. For example, the Code of Ethics of the American Medical Association (AMA) states that “a physician . . . shall safeguard a patient’s confidences within the restraints of the law” (American Medical Association [AMA], 1996). The AMA more recently has observed that “patients have a basic right to privacy of their medical information and records. . .patients’ privacy should be honored unless waived by the patient in a meaningful way, or in rare instances of strongly countervailing public interest” (AMA, 1998). The Ethical Principles of Psychologists state that“psychologists have a primary obligation and take reasonable precautions to respect . . . confidentiality rights” (American Psychological Association, 1992). (See also, American Managed Behavioral Healthcare Association, 1998; American Psychiatric Association, 1998; National Alliance for the Mentally Ill, 1998).
While the importance of confidentiality as an ethical principle is evident from these statements, it is also clear that confidentiality is not an absolute value. The AMA’s 1996 statement qualifies the principle of confidentiality by observing that it is to be protected “within the restraints of the law.” The American Psychological Association provides exceptions as well, noting for example that disclosure of otherwise confidential information is permissible“where permitted by law for a valid purpose, such as. . .(3) to protect the patient or client from harm” (Ethical Principles of Psychologists and Code of Conduct, 5.05). As the discussion below suggests, the law creates many circumstances in which confidentiality may or must be breached. At the same time, legal principles reflect broader values, and so there is often significant disagreement about the exceptions to confidentiality that the law permits or requires.
It is also important to note at the outset that the right to confidentiality belongs to the person receiving services (Campbell, 2000). The ethical codes of the various professions, and most confidentiality laws, obligate professionals to take steps to protect confidentiality. However, in general, the right to confidentiality belongs to the client; the right to waive confidentiality also is the client’s, although there are situations in which the provider of treatment has no choice under the law but to disclose.
Values Underlying Confidentiality
The principle of confidentiality is designed to advance certain values. These include reducing the stigma and discrimination associated with seeking and receiving mental health treatment, fostering trust in the treatment relationship, ensuring individuals privacy in their health care decisions, and furthering individual autonomy in health care decisionmaking.
There are certain illnesses that often evoke public unease and on occasion overt discrimination. For example, in the past, cancer was often not discussed; in fact, physicians often chose not to tell patients that they had diagnosed cancer. In recent years, individuals with AIDS have often faced discrimination. Mental illness has often fallen into this category as well. For years, the stigma and discrimination associated with mental illness were reinforced by laws that stripped people of their legal rights upon admission to a psychiatric hospital, and by social attitudes that often equated mental illness with potential violence. While many of the legal rules that reinforced discrimination have been removed, public attitudes regarding mental illness continue to vary. In an effort to reduce the risk of stigma and the discrimination that often results, confidentiality laws seek to protect both the fact that an individual has sought mental health treatment as well as the disclosures that are made during treatment.
Confidentiality generally is considered to be a cornerstone of a doctor-patient relationship (Dierks, 1993). Many psychotherapists assume that mental health treatment is most likely to be successful only if the client has a trusting relationship with the clinician (Sharkin, 1995). The Supreme Court language quoted at the beginning of this section reflects the same assumption. While the research findings on this subject are somewhat mixed (see discussion below), it is beyond dispute that many individuals in seeking treatment for mental illness reveal much of their private selves. It seems reasonable to assume that for many people, trust that their privacy will not be intruded upon beyond the confines of the clinical relationship is an important element in permitting unguarded exchanges during treatment. Concerns regarding confidentiality may cause individuals to take steps to protect themselves from unwanted disclosures in other ways that carry their own costs. For example, an individual may decide to pay for his or her own care, withhold certain types of sensitive information during treatment, or avoid seeking care.
The law has given considerable attention in the last 3 decades to the idea that people have a right to privacy in making decisions regarding their health care. While the legal right to privacy has been discussed and applied most often in the context of decisions involving procreation and decisions at the end of life, the general principle that the value of privacy is important to mental health treatment is not disputed.
Competent individuals, or in the case of minor children, their parents or legal guardians, have a right to self-determination in deciding to seek or forego health care, including mental health or substance abuse treatment. There are exceptions, for example, the use of involuntary civil commitment or court-ordered treatment. However, the general trend has been to expand autonomy in health care decisionmaking. Two ethical and legal principles are important anchors to the principle of autonomy. The first, informed consent, assumes that the better informed an individual is, the better equipped he or she is to make health care decisions. The second, confidentiality, is considered to be particularly important in the context of mental health treatment. This is because of the assumption that an absence of confidentiality may make a person less likely to seek treatment.
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