Health workers face a difficult choice when deciding whether to disclose patients’ HIV status to a third party Tracey Farren Nokwakwa screamed from the pain in her feet and shook convulsively, but the doctor was unable to find a cause. The hospital ran tests and admitted her for tuberculosis (TB), a pelvic infection and an ulcerated throat.
When they discharged her one week later, the hospital doctor was not even aware that she had a live-in boyfriend and a newborn baby at home. He referred her to her nearest clinic where a doctor and two nurses counselled her behind a closed door. Nokwakwa raged at them helplessly, but came out subdued. She told her long-time friend that she had Aids and swore her to secrecy. The nurses came to the house to persuade Nokwakwa to take her TB pills and took the opportunity to tell her boyfriend to “come and spit”- to have himself tested for TB. When the day came he declined, saying that he was not in the mood. Nokwakwa used the last of her strength to persuade her boyfriend that she should go home to the Transkei. Armed with a gift of tea for her mother, she took a long- distance bus to her grave. A relative took the baby and her boyfriend went back to his lonely room, wondering how to survive the void.
The word Aids had never been mentioned to him and his denial remained complete. There is as yet no legislation that deals specifically with confidentiality in the treatment of Aids. Tony Hawkridge of the Department of Health says that the department defers to the South African Medical Association guidelines on when to disclose a patient’s HIV status to their sexual partner. The ethical guidelines leave it to the discretion of individual doctors whether to break the news. Ideally, the patient should do the telling, or participate in the process. If the patient refuses, the doctor is within his/her rights to go ahead and do so. Before breaching confidentiality, however, the doctor must be sure that the risk to the “third party” is “grave and clearly defined”, and make “every reasonable effort” to explain to the patient that confidentiality is about to be breached. The South African Council for Social Service Professions has similar guidelines, but Johannes Sepeesa says that the Nursing Council’s guidelines do not deal specifically with the issue of sexual partners.
The combined Health Professionals Council of South Africa (HPCSA) has yet to come up with a universal code of conduct with regard to confidentiality. A contradiction exists between the ethics that do exist and the approach of ATICC (Aids Training, Information and Counselling Centre), the organisation that trains government professionals. ATICC seems to put the wishes of the patient above the spread of the disease. An ATICC counsellor in Cape Town says: “We leave it to the patient. We are not allowed to tell the spouse. The patient can take you to court.” A trainer at Gauteng’s ATICC says: “We can’t force them. That is why we say that it is the responsibility of every person to use precautions.”
She admits that it is “difficult, after five years of marriage, to suddenly insist on using condoms”. The tendency to avoid the realm of sexual relationships is not confined to the government health system. People in both government institutions and Aids NGOs are wary of prosecution. This is in spite of the fact that legal action for breaching confidentiality to sexual partners is so far unheard of. Liesle Gerntholtz of the Wits Aids Law Project says that the HPCSA has a backlog of complaints against medical professionals who went over their patients’ heads to tell their employers of their HIV status. The remainder of the cases involve disclosure to family members without the patient’s consent.
Health professionals frequently offer up horror stories as warnings against insisting that clients disclose their HIV status to their sexual partners. Dr Virginia Asevedo, a community health manager in Cape Town, refers to a case in the news where a nurse’s indiscretion resulted in a KwaZulu-Natal woman being beaten to death. She adds: “Many people who are brave enough to speak about it end up in the streets – abandoned and abused.” Asevedo encourages clinic workers to urge patients to tell their partners, but “in their own good time”. She says: “It’s not your job to tell people that their partner has HIV. Some [health care workers] do try to do it, but where does the obligation end?” Health care workers are faced with the dilemma of preventing and treating Aids while maintaining the community’s trust. Asevedo says: “The longer we prolong the conspiracy of silence, the more difficult it is to change knowledge into behaviour. People still think that it is not really here … But it would do no good to become known as the doctor or the clinic that tells, or no one would come for help.” Joy Wilson of the Aids NGO Joy for Life tells of how three Aids sufferers were locked into a portable toilet by persecutory neighbours. They were fed in their stinking prison for two weeks before someone came to their rescue. Wilson says that her counsellors never override a client’s refusal to inform their sexual partner/s. She encourages openness all round, though, saying: “If you don’t talk, it’s like throwing your T-cells down the toilet. Living with secrets can kill even healthy people.” A counsellor at the Joan Croone HIV/Aids Mission says: “It’s up to the patient. Some tell their partners immediately, but we’ve had patients who have taken two to three years to make their status known.” Sophia Louw of the Aids Action Group says they can seldom verify whether clients actually do tell their sexual partners when they say that they will. She says: “We often never see the partner … and if you ask them where their partner tested, they’ll say that they preferred to go elsewhere.” Nokwakwa’s story shows that discretionary rights are hampered by the fact that state doctors and nurses are often so overloaded that they do not even come close to considering the fate of “third parties”, – even when sexual partners are easily identifiable and most certainly “at risk”. The situation is not that different in private practice. An ATICC counsellor says that private doctors are unwilling to take the time to counsel their patients. Mary Caesar of the Aids Legal Network says that in any case “doctors can’t figure out how to apply the guidelines”. Louw says that the Aids Action Group deals with two categories of doctors. One informs their patients’ partners without regard for the counselling process and a second group is not even aware of their rights to disclose once certain preconditions are met.
In the midst of the confusion, Aids continues to raze the country’s population. By 2006 it will claim South Africans at a rate of a million a year. The discretion of health professionals seems a timorous weapon against the scale of the assault. Aids NGOs and government health-care workers seem to agree that the workplace is no place for a person’s Aids status to be known. It is also agreed that community rights do not enter into the confidentiality issue. Gerntholz sums it up: “Unless you are bleeding all over people, Aids is not a contagious disease. The community does not have the right to know.” It is agreed, too, that other health practitioners only need to know a person’s HIV status if it is relevant to their treatment. Otherwise, clinic and hospital staff are trained to treat every patient as if they were HIV- positive, applying what the South African Medical Association calls “universal precautions”.
While confidentiality seems appropriate in the workplace and the community, sexual sharing turns the issue of confidentiality into potentially deadly ground. The disease takes full advantage of the uncertainty around disclosure to sexual partners. Every lover or spouse who remains unaware of their partner’s infection represents another unguarded gateway for the virus to slip through.