April / May 1994
by Mary Schnack
How do I know the doctor knows?
Robert Oliver, 35, was the typical male health care consumer. He hadn't had a family physician since his mother stopped taking him to the pediatrician. About once a year, when a chest cold would kick in his asthma, he used community health clinics to get the antibiotics he needed.
In 1989, Robert noticed he had swollen lymph glands. Robert's doctor cut to the chase: "In a blunt tone of voice, he told me, 'You probably have the AIDS virus.' When I started asking him some questions, he said, 'Oh yes, as if I spend all my time researching and understanding this disease.' He was so pompous and condescending and quite indignant about the fact that I would ask him questions. I knew then that I had to start educating myself and find a different doctor."
Long before Hillary Rodham Clinton was put in charge of health care reform, women have been the driving force behind health care. "Women are used to intimate working relationships with their doctors, they learn through their gynecology exams," said Tom Horowitz, D.O., who has a family practice in Los Angeles. "Men are not used to that kind of relationship with their doctors. But HIV care gets them to be like that."
Robert Oliver said it was the ensuing test results that showed he was, indeed, HIV positive, that "forced me to protect my life and find a good doctor. My whole perspective changed. I didn't understand HIV except that it was a death sentence. My life was in jeopardy."
Oliver decided to educate himself. He attended a symposium on HIV and heard Dr. Horowitz speak. It was then that he started seeing Dr. Horowitz.
"He's kept me alive," says Oliver. "He knows what he's doing. He stays up on what's going on. He shows me articles. He cautions me against the 'drug of the month' theory. He answers my questions. He feels secure enough with himself to say, 'It's time for a specialist.' A lot of doctors won't do that because of their ego. They think they can handle all the problems."
Horowitz is the past chair of the Los Angeles County Commission on AIDS. "In the early days [of the AIDS fight], we knew the disease was growing but had no idea what it was. And it was gay men being affected. With my practice near Hollywood, I knew I had to learn HIV care and how to help these patients or I wouldn't be able to provide medical service to my community."
Horowitz says there is a formal system for keeping current on HIV and AIDS care. "There are academic journals and newsletters out there, but they don't really offer a lot," he said. However, it's the informal system that keeps physicians up-to-date, such as colleague interaction. "My discussions in the hallways [with other HIV doctors and specialists] can be the most valuable. I bounce a problem off an oncologist, share information with the infectious disease doctor and so on. We have to work as a team."
But the hard part, Horowitz admits, is for a patient to know if the doctor knows.
"You have to start with the assumption that nobody knows everything," he said. "Beware of the doctor who tells you that he does. The doctor who is willing to say 'This is how I see it,' and discusses it with you, is the best type. If he seems to know the literature and the power players in the community -- so he knows who to call if things aren't going well -- that doctor probably has the kind of knowledge you're looking for. The bad attitude is, 'I'm the doctor, do it exactly my way, and don't ask too many questions.' There's lots of data on the science of the disease, but it doesn't do you any good if you can't talk to somebody about it.
"I encourage my patients to bring in articles they read so I see what they're reading and to give me time to do some more of my homework. The medical visit has moved away from taking the time it takes to go look something up. In HIV care, you need to go back to the old days where each patient visit includes doing your homework if you have to."
Robert Oliver was diagnosed with AID in 1992. He said he's heard horror stories of patient/physician relationships from his friends but believes the days are pretty much gone when AIDS sufferers were treated like lepers. "We're now strong enough as a group to demand compassionate care. The doctors are there to be found.
"By educating myself, I knew when I'd found someone knowledgeable. When you meet a doctor, make a statement up-front, 'I'm gay, and I have a lover that needs to work with you and me too. This needs to be a total partnership.' If he or she won't be open about everything to your and your lover, run out the door."
Horowitz says it's easy to be a good doctor to a patient like Robert Oliver. "The ideal patient never relinquishes any control, and everything is a shared decision. Robert's the Colombo of my patients. It's his disease, and I must work with him. He's not handing me the ball and saying, 'Play it well or I'm going to die.' He has a healthy attitude and has never become a victim to the disease."
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