Sickness and Wealth

Highland Hospital explores the complex ethical questions surrounding support groups for HIV positive patients

Acquired Initiative Deficiency Syndrome

Bryanne Burdick has always had a generous spirit. Two decades ago, he adopted a young boy whose mother was a heroin addict and raised him as his own. When he lived in LA, he joined a drag troupe called Mother Knows Best, and he and half a dozen other queens would work the bars, warning patrons of the dangers of unprotected sex. For the last eleven years, he’s been working with the Gay Men’s Health Collective and East Bay needle exchange programs, and regularly volunteers at the Casa Segura wound clinic, where he packs and dresses the abscesses of junkies. Five years ago, he cowrote a grant proposal to create a peer-run education program called Taking Control of Your Health: Living Well with HIV. Based out of Highland Hospital, the Living Well program is an eight-week course on the immune system, the side effects of protease drugs, and whatever else its clients want to talk about. The classes are facilitated by HIV-positive Highland patients, and there is a special intimacy among Burdick and the cofacilitators, an intimacy born of facing a deadly disease together.

On April 26, Burdick’s concern for others may have cost him his job. One of the Living Well cofacilitators had been acting erratically; she inexplicably blew off meetings and stopped returning phone calls. Burdick and his colleagues began to get worried–after all, the woman was more than just another service provider. Everyone in the Living Well program took walks around Lake Merritt and threw barbecues together, and when one of their own looked like she might be in trouble, Burdick and his peers felt they had to do something. She’d recently had surgery, they knew, so maybe her stitches had come open or something. Maybe she had an infection, bad news for an AIDS patient. Maybe, they all thought, she had started using drugs again.

When the woman’s business partner called the group and said her car had been spotted outside a house in East Oakland, Burdick and three other Living Well peers decided to intervene. They jumped in a car and drove out to the house; if she were using drugs, they resolved to pull her out of the house and make her get herself together. But it was just a terrible misunderstanding. She wasn’t using after all, and the residents of the East Oakland home she was visiting were offended by the suggestion that they had anything to do with drugs. An ugly confrontation ensued on the porch, and it took a while to smooth everything out.

A few days later Burdick’s boss, Dr. Kathleen Clanon, summoned him into her office. She had heard about the incident, and demanded to know the details. After all, AIDS is perhaps the most sensitive of medical subjects; patients’ sexuality and drug histories are involved, and they need to be able to discuss such matters without having the details broadcast to the world. Burdick responded that he wasn’t acting as a Highland employee at the time–he was the woman cofacilitator’s friend, and friends go the extra mile to help each other out. “At first I told her that I didn’t think it was any of her business, because I don’t have a clinical relationship with the people in this class,” Burdick says. “The four of us have a very close relationship outside the group, and having HIV is a strong commonality. I told her that what I do on my off time is my business.”

Since then, Burdick has been put on indefinite administrative leave, and it looks like he won’t be back. When he acted on sensitive information that he was privy to only as a result of his work, he was told he had crossed the line. But that’s the problem–the line doesn’t really exist.

Burdick is an administrator of the Living Well program; he raises money and lines up speakers, and he was never asked to sign a confidentiality agreement. Moreover, this isn’t group therapy, so the laws around confidentiality would not apply. Still, because the subject of the group’s discussion is AIDS, how the patients became infected, and how their seropositivity changed relationships with lovers and families, the classes become therapy sessions despite the program’s formal mandate. And so the rules around divulging sensitive information may apply, even when they don’t apply. It’s a gray area that Burdick has gotten trapped in, and it’s not the first time this has happened. In the ’80s, when gay men began developing quasi-health services that the medical establishment was too slow to provide, they had no guidelines for appropriate conduct. All too often, your client was also your ex-lover or your friend, and no one knew how to maintain a professional distance in the face of the epidemic. But as health programs developed by community-based organizations become subsumed within institutions like hospitals, the cultures of each have begun to clash with one another, and such problems are a long way from being resolved.

To Speak or

Not to Speak
Kathleen Clanon is no stranger to the delicacies of AIDS prevention and support work; in addition to her duties as director of the county’s HIV integrated services, she has volunteered with Berkeley’s needle exchange program for years. Clanon will not discuss the Burdick incident, but she says that the development of AIDS treatments, as well as recent changes in medical philosophy regarding patient empowerment, make the need for a strictly defined relationship between patients and health-care providers all the more important.

“Especially with HIV, we’re trying to see patients not as people on whom treatment is done, but partners with whom we work to treat the disease,” Clanon says. “In these situations, rules regarding boundaries between patients and physicians are critical. When people live in the same community and are friends even as they see one another in a quasi-professional setting, what should the rules be regarding privacy and confidentiality? In order to make people feel comfortable, everybody has to not only guarantee confidentiality, but avoid so much as the suggestion that confidentiality could be compromised at some future point, in a different setting. If I see patients on the street, I don’t even acknowledge them. I don’t say hello or anything. When I see them next week, I point out that I didn’t talk to them earlier, and explain why.”

As the executive director of the Pacific Center, Frank Gurucharri helped organize a number of different HIV support groups. According to Gurucharri, state law does not enforce confidentiality among support groups, but such groups adhere to the spirit of confidentiality just to be safe. “An organization that provides such services to the community will follow some guidelines like the standards that therapy groups provide,” he says. “But that’s on a voluntary basis. Those rules are called the common or best practices, in which it’s generally expected of you, but there’s no law requiring it. It’s like when a ship is sinking, the women and children get off first. There’s no international law that mandates that, but that’s what everyone does. We have a responsibility to make sure that the space we provide the clients is safe.”

But Burdick feels that since he played a strictly administrative role in Living Well, his relationship with his cofacilitator was simply that of a colleague and close friend. If he had worked in any other field, and a coworker was engaged in self-destructive behavior, his intervention would be lauded, not punished. But in this case, because both are HIV-positive, an arbitrary set of expectations has been placed on them without their knowledge.

Twenty Years of Gray
According to Eric Rofes, who served as executive director of the Shanti Project from 1984 to 1993, such ambiguity is a natural consequence of developing health services outside the milieu of the medical establishment. Gay men had to take a crash course in health care, and while countless lives were saved by such initiatives, mistakes and overlapping relationships were inevitable.

“At the tail end of the ’70s you had a population of men in their twenties and thirties who valued open sexual practices and had been as informed by gay liberation as they had been by the politics of the ’60s, and they organized their sex and drug use in ways that are very different from how we understand them today,” Rofes says. “In the early days of AIDS, you had guys in the same social and sexual networks working to do medical care together. To have this group come together to fight HIV, you had huge complications regarding boundaries. What happens when you’re a board member of a organization, and the director of your prevention program is your best friend and ex-lover, and he sero-converts? What does it mean when you’re doing prevention work, and yet you have unprotected sex or use ecstasy on the weekends? Or you’re in a sex club and your friends and clients are there too? What does it mean to have an organization whose board of directors are all HIV-positive and therefore sick and terrified of dying? When the terror of what’s going on in their bodies starts complicating their work? What was it for me to do this kind of work while going to funerals on a weekly basis? This is the unwritten story of the first twenty years of AIDS.”

In a way, whether Burdick acted inappropriately or not depends upon the setting. If he had intervened in the life of a colleague at a community-based organization, perhaps he would have been warned not to do it again. But when the setting is a county hospital, with a legal department anxious about malpractice lawsuits, administrators cannot afford such flexibility. Burdick may simply be a casualty of the changing face of HIV medical care. It’s no longer something that AIDS activists developed on an ad-hoc basis, and it has rules that can no longer allow for the generosity of a single, good-hearted man.

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