Confidentiality: When Does It Give Way to Other Ethical Imperatives?

When 21-year-old Susanna Gabay left a Eugene, Oregon, hospital in early April 2010 after being treated for a psychotic episode—apparently successfully—she returned to her apartment in town with an appointment to see a community psychiatrist a month later, on May 5.

But Susanna never made it to the follow-up appointment, and on May 6 she took her own life. Her parents, Jerry and Susan Gabay, told Psychiatric News that though Susanna had signed an authorization allowing release of information to her family, they were in fact given scant information about the nature of her condition and, crucially, were not told of her risk for suicide.

The tragedy of Susanna’s death may have stemmed from the shortened hospital stays and failure to coordinate follow-up care that have been endemic in a fragmented mental health care system. But Jerry and Susan also believe the lack of communication from the hospital and clinicians who treated her—despite Susanna’s authorization—left them blind to the seriousness of her condition. They say her death is attributable in part to a “culture of silence” among clinicians about sharing information with family members and caregivers.

The Gabays believe clinicians are too inclined, by training and long tradition, to err on the side of caution about sharing information—a tendency abetted by what they also believe is an overly-restrictive interpretation of the Privacy Rule within the Health Insurance Portability and Accountability Act (HIPAA).

Since their daughter’s death, the Gabays have championed the rights of family members and caregivers to have access to information about loved ones being treated for serious mental illness. They were instrumental in the passage of a law last year by the Oregon legislature that clarifies conditions under which protected health information may be disclosed by a health care provider, consistent with HIPAA, without obtaining an authorization from the individual and without incurring liability.

“At minimum, providers must be encouraged to seek authorizations to communicate with appropriate supporters of the patient and then actually communicate,” Jerry, a board member of the Oregon National Alliance on Mental Illness, told lawmakers during testimony on the bill.

The Gabays also helped to develop, with the support of the Oregon Council on Child and Adolescent Psychiatry and the Oregon Psychiatric Physicians Association, resource materials to guide both clinicians and family members about the circumstances under which information—and what kind of information—can and should be divulged. In an interview with Psychiatric News, Susan Gabay said, “The responsibility to protect the safety of the patient trumps confidentiality.”

Navigating Between Confidentiality and “Paternalism”

Confidentiality is a bedrock ethical principle of psychiatry: the nature of mental illness and the suffering that brings patients to a psychiatrist render what transpires between therapist and patient especially sacrosanct—and in some people’s opinion, inviolable.

But this longstanding ethical principle can come into conflict with a recovery movement that has empowered family members and caregivers to expect that clinicians will share information vital to their loved one’s recovery. The tension between these two conflicting precepts has been heightened as well by publicity about acts of violence committed by individuals treated for mental illness.

In the wake of the 2012 shooting at Sandy Hook Elementary School in Newtown, Connecticut, and subsequent Congressional hearings during which clinicians expressed confusion about what the HIPAA Privacy Rule allows or does not allow, the Office of Civil Rights in the Department of Health and Human Services issued a clarification, underscoring that clinicians could indeed disclose information about a patient’s treatment under certain conditions (Psychiatric News, March 21, 2014).

Additionally, among the provisions in the Helping Families in Mental Health Crisis Act, sponsored by Rep. Tim Murphy (R.-Pa.), is one that calls on the secretary of Health and Human Services to promulgate final regulations clarifying circumstances under which a clinician may disclose the protected health information of a patient with mental illness to family. The bill was approved by the House 422-2 on July 6.

In an interview with Psychiatric News, Steven Kenny Hoge, M.D., chair of APA’s Council on Psychiatry and Law, described the dilemma for clinicians as a tension between the demands of confidentiality and the competing ethical principle of “paternalism”—a term of art in medical ethics denoting the duty to do what is best for the patient.

“Imagine a patient who is a young man with schizophrenia. He is intermittently psychotic but denies that he is mentally ill and tells the clinician ‘My parents want to view me as ill because that’s better for them. I don’t want you telling my parents anything.’ ”

“In fact,” Hoge said, “the parents or caregivers may be providing a great deal of support and structure with regard to appointments, taking medications, and otherwise helping the patient adhere to treatment. Historically, pre-HIPAA many psychiatrists would take a more paternalistic approach that, at least in some cases, would cause the clinician not to follow the patient’s explicit directive.

“That’s become complicated by what appears to be a relatively rigid regulatory scheme in HIPAA that suggests to many clinicians that it is not only unethical but illegal to take this more paternalistic approach. In the span of my career, medicine has gone down a path that has de-emphasized paternalism. But I continue to believe that our primary duty as physicians is to do what is best for the patient and that we should have both professional ethics and laws that support physicians in doing what is best for their patients.”

Past APA President Paul Appelbaum, M.D., said there are other instances where the boundary separating confidentiality and the imperative to act in the patient’s interest may not at all be a bright line, such as when a patient is doing or not doing something that undermines treatment—not taking medication regularly or abusing substances—about which family members might be usefully informed.

“In the current regulatory structure, that’s hard to do without consent,” he told Psychiatric News. “The first option for any clinician is to try to get consent. The regulations do allow disclosure of information to people assisting in the care of the patient if the patient is aware of it and doesn’t object. You don’t actually need affirmative written consent.”

Appelbaum is the Elizabeth K. Dollard Professor of Psychiatry, Medicine, and Law and director of the Division of Law, Ethics, and Psychiatry at Columbia University.

Ultimately, he said, clinicians must choose between confidentiality or paternalism on a case-by-case basis. “Family members play an important role in recovery, which is made more difficult when they have an adult family member about whom they are unable to obtain any information because the patient has told the clinician not to talk to family members. All of us have a strong impulse to act on the patient’s best interest when they lack some degree of insight or capacity to make a truly informed choice.

“But there is something to be said on the other side as well—that to single out psychiatry patients for a lesser degree of protection than other general medical patients are afforded seems inherently discriminatory,” Appelbaum added. “That’s something we ought to consider seriously when thinking about changes to the law.”

Since their daughter’s death, Jerry and Susan Gabay have made prevention of suicide, and the empowerment of families and caregivers, a mission. They say they respect the importance of confidentiality—certainly regarding the actual content of psychotherapy—but they argue that the clinician’s ability to navigate the boundaries between confidentiality and communication with family is in the nature of the title of “professional.”

“There is, of course, a tension between confidentiality and the value of sharing information,” Jerry Gabay said. “But there is also a reason clinicians are called professionals and not functionaries—because they can make those determinations responsibly.” ■