Confidentiality and Pediatric AIDS: A Creighton Research Project

Charles I. Dougherty, Kate Brown, Winifred Pinch, Joseph Allegretti, Barba Edwards, and Virginia McCarthy
Center for Health Policy and Ethics

Discrimination against HIV+ persons in jobs, housing, and medical treatment has troubled the national conscience and stimulated much religious and ethical reflection.

Institutions with some degree of religious affiliation, such as hospitals, are compelled to consider such problems in a practical manner and frequently on a daily basis. The plight of HIV+ newborns is particularly poignant and complex, and one of the thorniest issues surrounding their treatment is confidentiality.

With a grant from the federal government, a research team at Creighton's Center for Health Policy and Ethics is studying the ethical questions raised by confidentiality in the identification and care of HIV+ newborns and their mothers. The goal of the project is to develop national guidelines that can contain potentially discriminatory information while insuring that patients receive the assistance they need and that third parties are protected from infection. Center researchers have conducted open-ended interviews with over 60 doctors, nurses, social workers, advocates, hospital administrators, medical records specialists, mothers, and grandmothers in Boston, New York City, Long Island, Newark, Washington, D.C., Miami, Los Angeles, and San Juan, Puerto Rico.

Each respondent was asked to interpret the meaning and significance of confidentiality in his or her work. The vast majority of respondents felt that the question of confidentiality in this area is exceptionally important. HIV infection carries a significant stigma for the affected person and family. Disclosure of a newborn's HIV infection entails a disclosure about the child's mother and perhaps about the father. The social stigma is directly related to the main modes of transmission of the infection in this population. Sometimes the mother is an I.V. drug user. Sometimes the mother contracted the virus through sex with a husband or boyfriend who is an I.V. drug user. Sometimes the mother was infected through prostitution. Thus disclosure of a newborn's infection often signals the fact that the mother is associated in some way with illegal and stigmatized activities: I.V. drug use, prostitution, sex with someone involved in either or both. Consequently, in most of the cases we uncovered, patients and their families must deal not only with the medical implications of HIV infection of a child and his or her mother but also with fears of public disclosure.

Many of the mothers carry a deep sense of guilt about the activities that led to their infection. Sometimes guilt is mixed with anger; many of the women in this population have good cause to be angry about their lives. Most are poor, members of minorities, and victims of discrimination. Many are out of work. Some are homeless.

Because of the stigmatization of individuals who are HIV infected, many mothers try to conceal the infection. Some lie or use other forms of deception. Many suffer from the deception itself. Respondents reported that many mothers expend considerable psychic energy and experience a sense of isolation when they lie or use euphemisms about their own or their child's diagnosis. Moreover, failure to disclose a child's HIV infection can lead to inappropriate and even dangerous medical care, as well as to loss of social support.

Thus many mothers face a difficult dilemma. When they reveal their HIV status they open themselves to the possibility of rejection and other forms of discrimination. But disclosure is necessary to access appropriate medical services and social support. When patients and families conceal the diagnosis, they prevent stigmatization and limit discrimination, but they cut themselves off from the benefits of those who could help. And failure to reveal HIV infection has one other important ethical dimension. It sometimes places others at risk. The key ethical challenge therefore in dealing with the confidentiality issue is deciding who needs to know in order to provide the most supportive medical and social environment for the patient while preventing discrimination and containing the risk of infection to others.

We asked all of our respondents who in the network of people surrounding HIV infected children and their mothers really needs to know the diagnosis? We also asked them who does not need to know? Adding their responses together generates two long and inconsistent lists. Under the heading of those who need to know, our respondents named the following: doctors, nurses, all those providing direct medical service, phlebotomists, lab technicians, physical therapists, dieticians, psychotherapists, clergy, medical records specialists, typists who compose the medical record, hospital volunteers, foster parents, visiting nurses, home health care aides, social workers, "Buddies" from AIDS advocacy groups, school principals, classroom teachers, school nurses, other family members, and siblings. Those who do not need to know included hospital housekeeping, ambulance drivers and others involved in transporting patients, neighbors, probation officers, x-ray technicians, dieticians, elevator operators, hospital admissions, hospital volunteers, teachers, principles, school nurses, landlords, employers, former boyfriends, some family members, and siblings.

One alternative to informing care givers about each case of HIV infection is universal precaution--using gloves and other protective barriers to prevent transfer of blood and body fluids. The theory is that every patient should be treated as if he or she is a potential carrier of HIV infection. This approach avoids identification of AIDS patients for special treatment and protects care givers against infection from HIV+ patients who are asymptomatic and have not yet been tested for the infection.

But those who have had experience with universal precautions indicate that it is a mixed phenomenon. Although all health care respondents claimed to be using universal precautions, they also admitted to many difficulties and exceptions. One of our respondents summed up the situation by saying that it is "humanly impossible to be 100% careful 100% of the time with 100% of patients." Another noted a difference in hospitals between those that treat high numbers of patients with HIV and those that do not. It is psychologically difficult to use universal precautions when the numbers of infected patients are low and so is the sense of risk among health care professionals. Furthermore, nearly all respondents agreed that people are more cautious when they know that they are dealing with an individual with HIV infection or AIDS in spite of their claim to be using universal precautions.

Depending upon his or her age, the HIV+ child may need to know. But in many cases even older children are not told. Mothers often try to shield children from the knowledge of HIV infection because it immediately raises concerns about the child's death and the mother's death as well.

In nearly all our interviews respondents told stories about sex partners who need to know of their partner's infection but do not. Many women are afraid to tell for fear of abandonment. Some fear the loss of income abandonment would bring. And some fear domestic violence. Respondents also told of infected husbands and boyfriends having sex without warning their partners. Some contracted HIV through I.V. drug use their wife or girlfriend was unaware of. Others had had sex with another partner and were afraid to admit it. Some males survived the death of one partner with AIDS and remarried or began other sexual liaisons with other women who were unaware of their infection.

New York State has a law that allows doctors to warn individuals who are at risk because of sexual relations with HIV infected individuals. Doctors--but no other health care professionals--are authorized to contact these individuals or pass their names on to county health officials. The law allows doctors to warn; it does not create a duty. Our New York respondents claimed that many doctors in the state have chosen not to warn third parties. They continue to use moral suasion to urge patients to inform their partners themselves. Sometimes this approach is successful; sometimes it is not.

One conclusion from this research project is already clear. None of our public health measures and few of our attempts to care for mothers and children suffering from HIV infection and AIDS can be effective outside an atmosphere of trust. Trust allows us to encourage voluntary testing. Trust allows us to reach these vulnerable patients and gain their compliance in treatment and prevention. But trust requires sensitivity to the complex demands of confidentiality. Clinically workable and morally acceptable national guidelines must embody this insight.