A registered nurse with 23 years' experience, Lizabeth Ekalo likes to describe herself as a "patient advocate." She urged the patients under her care at the University of Miami's Sylvester Comprehensive Cancer Center to question their doctors, to educate themselves, to take charge of their own health care. Her philosophy: The more a patient knows about her disease, the better equipped she is to combat it.
So when a cancer patient recently begged her to reveal the preliminary results of an AIDS test, Ekalo complied. She knew she was disobeying hospital policy by disclosing that the results were positive, but she decided the risk of discipline was outweighed by the patient's need to know. (Subsequent tests revealed that the patient was not infected.)
That decision -- a violation of Florida law -- cost Ekalo her job. According to state statute 381.004, "No positive test result [for HIV] shall be revealed to any person, without corroborating or confirmatory tests being conducted."
A month has passed since Ekalo was fired from her post as associate nurse manager, a job she'd held for three and a half years. Her dismissal stings. Ekalo says she wanted to be a nurse ever since she went to kindergarten in Broward. But after turning the incident over in her mind dozens of times, she says she still believes she did the right thing. "Morally, I cannot lie to a patient," she says. "Legally, I don't know. I guess I'm caught between a rock and a hard place."
It all started with an unusual test result. A 24-year-old woman suffering from Hodgkin's disease had consented to participate in a routine screening for HIV, the virus that causes AIDS. (Confidentiality laws prohibit the release of the patient's name.) On May 8, the preliminary results came back positive. Both Ekalo and the woman's physician, Dr. Aaron Wolfson, were surprised.
According to Ekalo, not only had the woman stated that she'd avoided high-risk activities, but she also had tested negative for HIV in two earlier tests, one of which had been administered within the previous two months. Ekalo says that Wolfson, who was worried that the blood samples might have been contaminated or that specimens somehow might have been switched accidentally, asked her to draw more blood for a final confirmatory test. She says the doctor also instructed her not to tell the patient the preliminary results had been positive.
That evening, after Dr. Wolfson and most of the other cancer center staffers had left for the day, the patient arrived for a radiation therapy session. Upon learning that she would have to give a second blood sample, Ekalo recalls, the patient became suspicious. She says she attempted to calm the woman, explaining that the first results had been "abnormal" and the test needed to be redone.
"She said, 'What's abnormal?'" Ekalo remembers. "I said, 'Your blood test.' She said, 'Which one?' I said, 'I can't tell you.' She said, 'You have to tell me.' I said, 'I can't tell you.' She said, 'It's my HIV, isn't it?' And I said, 'What makes you think that?' It turned out that the girl had been raped when she was fifteen and that's why she was so concerned about HIV."
Ekalo says she chose her words carefully, trying to avoid directly answering the patient's question. "I said, 'Look, your two prior tests have been negative, it's highly unlikely that these have been any other than the same,'" the nurse recalls. "And she said, 'You have to tell me.' I said, 'I can't tell you.' And she said, 'You mean I'm supposed to go home tonight without knowing?' She said, 'I can't even sleep, I can't go home. I don't know what's going to happen to me.' She started to cry, and I put my arms around her. She said, 'You gotta tell the results of this test, they were positive, weren't they?'"
At this point, Ekalo says, she nodded in confirmation. Even though no doctors were present, she felt the woman needed an honest answer. "I shook my head yes, but I said, 'It's a preliminary test. It's highly unlikely that this is a true reading.'"
Ekalo says she immediately called Wolfson at home and asked him to speak to the patient. Before she left work for the day, she also left a message for the center's staff psychologist and attempted to ensure that the psychologist schedule an appointment with the patient the next day. (UM policy requires that all patients with positive test results be referred to psycho-social services).
When she returned to work two days later, Ekalo was handed a memo informing her that she'd been fired for "multiple serious violations of Radiation Oncology Departmental policy, UMHC Policy and Procedure and Florida law." She filed a grievance protesting her termination, which was denied. An appeal is pending. (Like other UM nursing employees, Ekalo is not represented by a union.)
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Dr. Wolfson declined to comment for this story, saying that to do so would be "inappropriate." According to Dr. W. Jarrard Goodwin, medical director of the Sylvester Comprehensive Cancer Center, Ekalo's firing was clear-cut. "Basically she violated Florida law, as well as a direct order from the doctor who was treating the patient," he says. "I think that this was a case where [the nurse] was misguided and did real and potential harm, probably because she thought she was doing the right thing." Having conferred with staff members familiar with the incident, Goodwin adds that he believes Ekalo blurted out the test results without any prompting from the patient and adds that there had been other problems with Ekalo in the past. He refuses to discuss the nature or extent of those problems or comment about whether they involved improper disclosure of HIV test results. In accordance with Florida law, the university did file a report with the state board of nursing, which has the authority to revoke Ekalo's certification.
Dr. Lawrence Feldman, a Miami physician who specializes in treating AIDS patients, questions whether the nurse's actions really made a difference, in light of the patient's preoccupation with the test. "I don't think her feelings would have changed until she knew she was negative," he says. "What harm was really done? The patient had a right to know the results."
Paul Crockett, a well-regarded local attorney who wrote a 1994 book called Gay Law 101: What Florida's Gays and Lesbians Need to Know About the Legal System, says the incident illustrates the tension that has arisen within the medical establishment as a result of new laws governing AIDS treatment. "Yes, she broke the law and there are serious consequences," Crockett notes. "But the circumstances put her in a very difficult position." Not only does the requirement of concealing test results run counter to many physicians' belief in the compassionate power of honesty, he points out, but the law itself is inconsistent. Only the release of positive results is prohibited; Ekalo's actions would not have been questioned had she revealed that the results were negative. "It left a very thin line for this nurse to walk on," Crockett notes, adding that he knows of no other health professional who has been fired for a similar transgression.
Ekalo, who is accustomed to comforting patients who have just learned they have cancer, says she thinks AIDS should be stripped of its marginal status. "I advocate that we relook at the laws governing HIV testing and stop looking at the disease as a stigma," she asserts. "What's the big deal of having HIV? It's a lethal disease like many other diseases. We're not afraid to tell a patient they have cancer.