/ 30 June 2000

To die among family and friends

As health budgets are cut to the bone, a hospital in KwaZulu-Natal is pioneering community-based care for people with HIV/Aids

Khadija Magardie

An unzipped first-aid kit lies on an empty table in the Community Outreach Centre at St Mary’s Hospital in Marianhill, KwaZulu-Natal. The kit comprises some bleached, carefully packaged sterile instruments, a pair of surgical gloves, a sterile plastic bowl – and a small bottle of bubble-bath.

The medical supplies – which bear the mark of their donors, the Swiss Army – are given to community health workers by hospitals like St Mary’s to care for full- blown Aids sufferers.

These so-called “death kits” are a stark reminder of the devastating toll of the pandemic in the province. To cope with serious budget cuts, hospitals like St Mary’s now have little option but to drastically reduce the number of Aids sufferers they admit and instead spend their meagre resources on training community health workers to tend to sufferers.

Sister Ntombifuthi Mthalane, co- ordinator of the St Mary’s centre that trains community health workers, explains that the strategy may sound callous but that is unavoidable. “It’s cheaper than blocking hospital beds,” she says.

The volunteers, nearly all of whom are women, are remunerated with a hot meal when they attend the hospital’s classes. The sessions are funded almost entirely by donors.

One of the main problems with this strategy is that Aids sufferers are sent back to hostile communities. In many villages, people with Aids are told to “go and die in the hospital, not here. People bring in their dying under the cover of night – they are afraid to be associated with Aids,” says Sister Christa Mary-Jones, a nurse manager at St Mary’s.

Advocates of community care for Aids sufferers say it affords people the dignity of dying in the presence of supportive family and friends.

In one ward at St Mary’s a group of elderly women in church uniform sit around a young woman’s bed, praying. “All the people in this ward are on their way to heaven,” says Sister Mary-Jones. They all have Aids.

St Mary’s, a state-aided 200-bed mission hospital, is in the epidemic’s epicentre, KwaZulu-Natal. The province has possibly the highest incidence of HIV/Aids in the world, with more than 33% of the population infected.

It serves a semi-rural community of more than 750 000, and estimates that up to 250 000 people within its surrounds are HIV-positive.

St Mary’s is one of countless hospitals around the country seeking to balance what one staff member calls “a conflict between financial realities and service delivery”. Severe budget cuts have meant that the 73- year-old hospital has had to all but forego certain services, and start charging for others that were previously free.

Among those most affected by subsidy cuts has been the hospital’s antenatal wing, and the adjacent St Anne’s mother and child clinic. This, say nurses, will have dire consequences for HIV/Aids infection rates in pregnant women and children.

Women and children constitute 75% of all patients at both facilities. The midwife obstetrics unit delivers an average of 6E000 babies annually. And until subsidies were cut, St. Anne’s saw up to 2E000 pregnant women and children monthly.

The effect of charging an already impoverished community up to R30 for primary health care is evident when walking through the deserted St Anne’s clinic. A solitary figure of a mother and her infant sit in a corner of one brightly painted, Mickey Mouse-adorned rooms. The rooms look brand-new, and are stocked with costly equipment and medical supplies – all of which now stand unused.

A nurse holds up a graph to illustrate patient patterns. Before St Anne’s started charging patients, it cared for an average of 2E000 adults and 2E400 babies a month. The latest stands below 400. For nurses, a reduction in patient numbers is worrying because the lack of primary health care facilities is “a break in the link” of the district health care system.

‘Mothers will wait until their babies are really sick, even dying, before bringing them in,” said one nurse. Another problem with downscaling clinics like St Anne’s is that correct diagnosis is proving increasingly difficult. Back at St Mary’s, Dr Douglas Ross, the superintendent, is doing his early morning rounds in the children’s ward. A nurse explains that one infant, initially diagnosed with pneumonia, is not recovering. Ross immediately orders an HIV test.

Sister Mary-Jones explains that when people are admitted, they are diagnosed according to the particular illness. This may be a “cover-up”, because doctors won’t suspect HIV/Aids until they see the patient is not getting over the illness. It’s worse when it comes to infants and young children, as many mothers wait until it is too late to bring in the child.

“They bring in a really sick child, and say he/she is not getting better. We can then order an HIV test, by which time it may be too late,” says one nurse.

A primary health care facility would be a “go-between”, where medical staff can monitor the patient’s progress and be more alert to the possibility of HIV/AIDS. A notice on the door of St Anne’s says it will be shutting down completely next month.

Women attending the antenatal wing who are not from the area, and are not referrals, also have to pay. Like the main clinic, there has been a drastic drop in patient numbers.

Earlier this month, the Medical Research Council (MRC) said almost 60% of pregnant women tested at the St Mary’s antenatal clinic were HIV-positive. The statistics formed part of research done by the MRC into the use of anti-retroviral drugs by pregnant mothers. The MRC is conducting clinical trials into treatment with Nevirapine, an anti-retroviral drug, at St Mary’s. Hospital staff have slammed the statistics as “alarmist”.

The MRC’s research into mother-to-child transmission was preceded by intense midwife training by the hospital’s obstetrics unit. The HIV/Aids threat has had an impact on the way midwifery is practised. Sister Mary- Jones, herself a trained midwife, says the changes are drastic.

“We now have to treat every patient as potentially HIV-positive,” she says.

To protect themselves, and other patients, midwives must follow strict procedures during delivery, like not touching body fluids, and new anthracite flooring that cannot absorb blood was installed. Training midwives now also have to do a compulsory module on HIV/Aids as part of their studies.

But what is often neglected, says Sister Mary-Jones, is the emotional toll HIV/Aids has taken on midwives. Before, a woman and her newborn were welcomed, she says, but now they are now to be viewed as “dangerous”.

“Can you hug someone, and show you mean it, when you are dressed in all that protective clothing, like a robot?” she asks.

The need for community-based care will be one of the subjects tackled at the upcoming 13th International Aids conference in Durban. The project facilitators at St Mary’s hope to make a presentation at the conference on what is likely to become an increasingly common practice.

UNAids this week reported that about half of all 15-year-olds in South Africa and Zimbabwe may die of Aids, with at least 20% of adults infected. And as the pandemic tightens its grip on the country, more hospitals and clinics are likely to pursue a similar strategy to St Mary’s, concentrating on equipping communities to care for patients during their final days.

Monitor, PAGES 35 and 36