Discretion often the better part of valor

How can physicians decide when a health-related family secret ought to be kept secret and when family members should be encouraged to share it?

Reply:

It is 1984 in the southern hemisphere, and a 23-year-old medical student is referred to you, a surgeon, for generalized lymphadenopathy. You suggest a biopsy of an axillary node. During the operation it occurs to you to test the student for the newly discovered virus, HTLV3. It is unlikely the test will yield positive results, for it is a rare virus, and thus far confined to North America. Some weeks later the results come back positive.

A number of questions arise. Do you tell the medical student that you have tested him without his consent? At that time and place, there are no existing laws or ethics regarding reporting or disclosure in this case. How do you make the decision? Do you share this sensitive information with other colleagues or religious leaders, in an attempt to deal with your dilemma? How will the information affect the young man? What will the ripples be in his family? How will it affect his career? Is your decision affected by the fact that there is no effective treatment available? Finally, if you decide to tell him, how will you ensure his well-being in the face of this new information?

This case about opening a secret to the patient exemplifies an ethical problem for which, at that time, there were no established structures of support and no received notions of how to proceed. After carefully weighing the options, the surgeon ultimately made a personal decision to disclose the information about an untreatable diagnosis to the patient.

Today there is a plethora of knowledge, laws and ethical guidelines regarding the disclosure of information concerning HIV/AIDS. But physicians should not rely on these established guidelines without considering the ethical and emotional ramifications of each test ordered and each piece of information shared.

With the explosion of knowledge in medicine, including the mapping of the human genome, doctors are faced with new dilemmas regarding the disclosure of information. As in the case of AIDS 20 years ago, these are dilemmas for which there are not yet established solutions or ethical frameworks to guide us.

Another example was discussed by Barron Lerner, MD, nearly a year ago in The New York Times. It occurs when health professionals, seeking potential donors for a kidney transplant, discover through routine genetic testing that one of the adult children they have tested is not the biological child of the person with kidney failure.

It is not uncommon for doctors to be faced with issues of secrecy. While some secrets are unusual, others, including alcoholism, domestic violence, undisclosed adoption, secret abortions or extramarital affairs are frequently encountered. I believe a physician who listens nonjudgmentally will naturally elicit secret information as part of the patient's history. Faced with such information, how does a doctor decide whether to encourage the patient in the further opening of the secret?

In some cases, the task is made easier by the law. As a result of the 1976 case, Tarasoff v. Regents of the University of California, a psychiatrist must disclose a patient's homicidal thoughts to specific individuals who are in danger. But even in such cases, it is important that legal requirements do not replace an ethical inquiry into the process, considering the effects of disclosure on both the patient and the person being warned, and on their relationship.

A modernist approach to ethics tends to be based on scientific theories, with rules that can be prescribed and implemented in a "top-down" way, such as in the code of ethics of professional organizations. When it comes to disclosure of secrets, I think a postmodern approach to ethics is more appropriate.

According to Freedman and Combs in Narrative Therapy, postmodern ethics focuses on individuals in their particular circumstances rather than attempting to apply universal principles to everyone.

Given the complexity of making such decisions, I propose a strategy for thinking about each situation as it occurs, comprising six areas of questioning, against a background context of "first, do no harm."

Where is a secret located?

Is the secret within an individual, between two people, or in a family? Secrets located within the boundaries of a family can contribute to family identity and unity, but also could cut the family off from the outside world and the needed help others could provide, as Evan Imber-Black observes in Secrets in Families and Family Therapy. Some secrets are located only in the medical system. Such secrets include medical errors that are never known by patients, or poor prognoses that doctors have difficulty sharing with patients. In such cases, the doctor holds a secret, unknown to the patient or his family.

What is the content of the secret?

Some secrets are positive, such as the secrets that adolescents keep from parents in an attempt to individuate. Some secrets are dangerous, such as sexual or physical abuse, and these require immediate steps to ensure safety. Some secrets are toxic, both to the individuals holding them, and to the family. Sexual abuse is an example of a toxic secret. Toxic secrets are, again according to Imber-Black, those that erode relationships and cause debilitating symptoms. Those involved in toxic secrets will need care if and when the secret comes to light. On the other hand, what some think of as "secret" is just information that one considers private -- information that no one else has a right or need to know.

What are the meanings of the secret?

Imber-Black says meanings flow from the culture and the way it constructs social realities. For example, homosexuality is no longer viewed as a secret in some segments of western culture, whereas in other cultures it remains taboo and unacceptable. Multiple meanings of any secret exist within a family or community. There was a time when parents withholding from a child the fact that she was adopted was considered protective of the child. Modern research, however, has shown this to be harmful, and it can come to be perceived by the child as withholding, if not cruel.

An HIV diagnosis in 1984 meant shame and probable death. While today there are isolated communities where that is no longer so, there remain vast populations in which such a diagnosis means being shunned by family and community.

What are the consequences of opening the secret?

There are good reasons for a physician to encourage disclosure of dangerous secrets. For example the anger and fear of an untold incest secret can distort a person's sense of self. But the question of disclosure is very intricate and complex. Disclosure can be dangerous to a person being abused, resulting in the perpetrator becoming increasingly aggressive.

The records of health professionals working for protective services or the school system are replete with tales of disclosures handled disastrously, as Dusty Miller documented in Secrets in Families and Family Therapy.

A physician's decision that a secret should be kept can be a relief in some cases, but in others it can serve to strengthen the shame associated with it. When a taboo exists around actions, for example, secrecy is encouraged or enforced, and can cause increased shame, as in the military's "don't ask, don't tell" policy regarding homosexuality.

What beliefs and biases influence my decision as physician?

It is important for physicians to recognize their own personal systems of morality and beliefs, attempting to enter their patient's world, rather than imposing personal biases and prejudices upon the patient.

In opening the secret with a patient, how should I proceed?

Having considered the secret from the various angles described, a physician must accept full responsibility for opening any secret to the patient, or helping the patient to do so, and the physician must have a plan for follow-up care of those whose lives are changed by the secret.

In conclusion, I would like to share with the reader that the example I used at the outset is my own story. I was the young medical student to whom the doctor disclosed the information, which I then held as a secret for many years. While I have many conflicting feelings about how I was given the information, ultimately most important to me is the fact that my doctor took time to show me that he cared, and did what he thought was in my best interests.

Using my own story as a clinical example is a conscious choice to make public the kind of information that is usually relegated to secrecy. I have chosen to use my story, not in my role as the physician writing the article, but in my role as the patient. For as the patient, I believe it is ultimately my right to choose how and to whom my story is told.

Paul Browde, MD, assistant professor of psychiatry, New York University School of Medicine; co-director of Narativ Inc., a story-based consulting business