In a country that cannot afford drug therapies for HIV-Aids, a ?500-a-year hospice scheme is helping South African families prepare for death. Karen MacGregor reports.
It is as bad as it gets. Three children live with their impoverished grandmother in the mud-and-iron hut that clings to a hillside in KwaZulu-Natal, South Africa. All three children have HIV-Aids: Zanele, two, and her brother Nkosingiphile, six, because their dead mother had the virus when they were born; and Bongekile, ten, because she was raped by an infected uncle.
Their father abandoned the children a year ago. Their mother, Thembi Mthuli, lives on in the form of three battered tin "memory boxes" to which only the children have keys. Each box contains a letter from her. "Granny wants you to be a teacher," Thembi wrote in the letter to Bongekile. "I just wish I was there to help educate you."
The Mthuli children are doomed to die young because they are poor. Such tragedy is unfolding quietly across sub-Saharan Africa, which hosts 20 million of the world's 28 million people with HIV-Aids. Quietly, because global research is focused on vaccines or on medicines and treatments that people here cannot afford.
Less than 5 per cent of global research into the disease comes out of sub-Saharan Africa, says Leana Uys, head of the department of nursing at the University of Natal in Durban: "Ours is a dark world that is not being properly described or studied."
In the health world, most research flows from the medical model. "Nursing concentrates on caring for people who are already infected, and we are looking at how to help them deal with symptoms of HIV-Aids. But there is not enough research in this field, because those who are dying have no voice. There is not enough focus on the dire needs of families struggling to cope with dying mothers and infected children."
The result is that help in the form of palliative home care is not reaching the vast majority of Africans who are dying of Aids. If the Mthulis can be thought of as being lucky at all, it is because they are on a programme that will help them to die in relative comfort and with dignity.
Among other things, development is about the quest for life. The United Nations Human Development Index measures income, education and longevity, and they are connected. In the developing world, lack of income and education result in shorter lifespan. HIV-Aids is reversing advances in development. In South Africa the department of health expects average life expectancy to be slashed from 60 years in 1998 to 40 in 2008.
One in nine South Africans, or 4.7 million people, is living with HIV or dying of Aids-related illness, and the numbers are growing. The virus is killing about 5,000 people a week. Some 250,000 citizens died of Aids last year, according to the South African Institute for Race Relations. The Actuarial Society of South Africa calculates that annual Aids-related deaths will grow to 700,000 in 2005.
People die needlessly in the developing world every minute of every day. In such circumstances, there are always people who are more vulnerable than others.
But as sociologist Tessa Marcus writes in an upcoming government report, while wars claim mostly young men, and natural disasters such as famine are generally indiscriminate, there is irony and terror in the ability of HIV-Aids - through the very act of reproduction - to wipe out the means of society's regeneration - young adults and children.
South Africa, where the research consultancy Abt Associates expects 82 per cent of population reduction to occur in the age groups nought to nine and 30 to 44 years, faces a declining population within a decade. According to Marcus, the decline in middle-aged people will be due to death, "while in the child population it will be due both to rising infant mortality rates and to a decline in births, as a result of adult deaths and declining fertility caused by HIV".
"In addition to the absolute rise in deaths and the absolute decline in fertility, HIV-Aids increases illness in society," Marcus says.
Given the lack of a vaccine, affordable medicines or state support for HIV-Aids sufferers, the burden of support is borne by families. When they become unable to cope, unbearable strain is placed on clinics and hospitals as families turn to them for help.
Port Shepstone Hospital, a half-hour drive from the Mthuli home, is reeling under the burden of the HIV-Aids epidemic. "Politicians do not have a clue. The problem is vast. We are seeing 8,000 new cases a year," doctor and superintendent Patrick McNeil says. "We have a ward of thirtysomethings. I sign off two or three Aids deaths a day."
The focus for people on the ground who are grappling with HIV-Aids is shifting from prevention to palliative care.
Port Shepstone is working with the South Coast Hospice, which is running a palliative care programme - funded by the Princess Diana Foundation - that is being used as a model for other hospice programmes around the country. The vast majority of its patients are suffering from HIV-Aids, and 15 to 35 are dying each month.
"The idea is to introduce HIV-positive people to home-based care while they are still relatively well, so when their families bring them back to die they all understand what is happening. This is a big help," McNeil says. "The hospice also helps transport people to and from hospital: we cannot afford that and neither can our patients."
But the major benefit of the palliative care programme is that it keeps people out of overcrowded hospitals. Some 20 hospice staff - nurses, trained community care-givers and social workers - operate in teams of five, visiting 450 patients across southern KwaZulu-Natal once or twice a week to deliver medicine and support. They are aided by 60 unpaid volunteers. Patients used to spend on average seven days in hospital, but the average stay has been cut in half since the hospice project began.
Uys conducted a major evaluation of community-based home-care projects across five provinces on behalf of the department of health. She found the South Coast Hospice model - which costs less than ?500 per patient a year - to be high-quality and cost-effective. She suggested that it be adopted countrywide.
"The most successful programmes involve hospitals, clinics and hospices in public-private partnerships that ensure a continuum of care. Hospices have home-care skills that the others do not."
Another study found the hospice model to be expensive, but Uys argues that it failed to acknowledge the significant savings made by keeping people out of clinics and hospitals. The government, which is already facing criticism for its lack of a policy to support HIV-Aids sufferers, is trying to reduce costs by funding projects involving unpaid care-givers. Uys feels these volunteers lack the necessary support to provide quality home care.
"For home care to be successful, families have to be confident of their ability to help the sick. And care has to be stable and supportive over time so that when the patient becomes really ill, the family is still able to cope. If home-based care comes too late, hospital still happens."
Crucially, Uys adds, home-care programmes change the attitudes of communities to HIV-Aids. Denial is still prevalent in South Africa because of the stigma attached to the virus, with most people pretending they are dying of other diseases. This is fuelling the epidemic.
"We have found that people who receive home-based support are more willing to disclose their HIV-Aids status to their families, friends and neighbours with less fear of a backlash. This is not just because communities see the van coming in, but because the sick are made to feel human again - Jin the microcosm of the family, this makes it more possible for them to disclose their status and discuss how they should be treated. It changes the dynamic."
Studies have also found that having contact with Aids sufferers is one of the most significant factors in changing people's behaviour. That does not happen in South Africa because so few people disclose their status. Thus South Africa finds that its approach to HIV-Aids may have been back to front. Failed prevention strategies, such as condom distribution, would have worked better if a major home-care initiative had encouraged people to disclose their status and others to change their behaviour.
"We are waking up to this reality now," Uys says. "I can only think that we didn't earlier because, in our efforts to transform the country post-apartheid, we were resisting HIV-Aids setting our agenda. We resented the disease raining on our parade."