Africa AIDS Hospices
2004 July 7th · Reed LindsayELIM, South Africa – The white pick-up truck rattles to a halt at a round mud and thatch hut cemented with cow dung.
Princess Cele, a stout woman wearing sunglasses, a dark blue beret and a mint green epaulet-adorned uniform, motions her head to a mound of dirt outside the hut.
“She’s dead,” says Cele, who is making her daily rounds as a nurse for nearby South Coast Hospice.
In winter, when the temperature drops at night and the wind blows dust over the steep, grassy hills that rise above the sugarcane plantations and beach resorts of South Africa’s Indian Ocean coastline, the death toll mounts. Pneumonia and tuberculosis often deal the final blow, but only after HIV/AIDS has ravaged the body’s immune system.
Ten minutes drive away, down a rutted dirt road that cuts through this expanse of ridge-top huts known as Elim, Cele visits a second patient.
Sizakele Ntuli, a gaunt woman with large eyes and a beatific face, grimaces in pain as she struggles to sit up in bed in a small, dimly lit room.
Her throat burns from oral thrush, and her body aches. She has lost nearly all feeling in her feet and cannot stand on her own.
Ntuli says she felt fine two weeks ago, but the disease appears to be advancing rapidly.
“The numbness in the feet shows that her immune system is going down,” says Cele, sighing deeply. “Until now, she’s been up and moving about. But today I can see that she’s sick. It looks like she’s getting worse.”
Cele massages Ntuli’s feet with a topical analgesic, and replenishes her supply of vitamins, pain killers and antibiotics.
Like most people living with HIV/AIDS in Sub-Saharan Africa, Ntuli cannot afford antiretroviral drugs (ARVs), which could prolong her life and keep her healthy. Without the ARVs, Cele limits herself to mitigating Ntuli’s pain and making her feel more comfortable as her body wastes away.
According to the Joint United Nations Program on HIV/AIDS (UNAIDS), an estimated 2.3 million people died from HIV/AIDS last year in Sub-Saharan Africa - many of them malnourished, under-medicated and in unremitting pain. In South Africa, more than 400,000 people will likely die from the disease in 2004, a number that is expected to increase in the coming years.
But increasingly, people with HIV/AIDS are suffering less and facing their deaths with a degree of dignity, helped by a burgeoning network of grassroots hospices and community-based caregivers that operate with threadbare resources and little or no government support.
While some experts argue that the only long-term solution to the HIV/AIDS pandemic is the prevention of future infections or the discovery of a vaccine, health care professionals and volunteers working in Sub-Saharan Africa’s poor rural areas and slums are trying to answer the more starkly immediate question of what to do about the dying. “With 7,000 people a day dying from AIDS in Africa, and under horrible circumstances for most people, it’s an intolerable holocaust,” says Peter Sarver, of the New York-based Foundation for Hospices in Sub-Saharan Africa. “There is a critical mass of people who decided to face this head on.”
In Sub-Saharan Africa - where 28.5 million people are living with HIV/AIDS, or 71 percent of the world’s total, according to UNAIDS - most hospitals have neither the resources nor the expertise to care for dying AIDS patients. Hospices and the community-based volunteers with whom they work are often the only source of support for those who are dying from the disease.
In the last decade, dozens of hospices have formed in Sub-Saharan Africa to provide what is called palliative care - helping people with HIV/AIDS cope with pain and with the trauma of facing death, an imminent reality for many Africans who are too poor to pay for treatment with ARVs. Nowhere has the hospice movement been stronger than in South Africa, where an estimated 5.3 million people were living with HIV/AIDS at the end of 2002, more people than in any other nation in the world.
Ten years of democracy in South Africa have resulted in little economic improvement in places like Elim, where there is no industry and only meager subsistence farming. Just as they did under apartheid, many men leave their families to work odd jobs in cities or as migrant laborers in mines and on sugarcane plantations. The prevalence of migrant labor combined with crushing poverty has created ripe conditions for the spread of HIV/AIDS.
At Princess Cele’s South Coast Hospice, she and three other nurses look after some 800 patients, twice as many as the hospice cared for three years ago. As patients succumb to the disease - on average they last eight months under the hospice’s care before they die - they are quickly replaced by an even greater number of new ones.
South Coast is based in KwaZulu-Natal province, considered the epicenter of the HIV/AIDS epidemic in South Africa. A 2002 survey of antenatal clinics in KwaZulu-Natal showed 36.5 percent of pregnant women to be HIV-positive, the highest of any province in South Africa.
In order to handle its growing case load with a limited staff, South Coast Hospice has teamed with family members and neighborhood volunteers who often provide the day-to-day care for the sick in their homes with guidance from a hospice nurse.
Like most hospices in Sub-Saharan Africa, South Coast has only a handful of back-up in-patient beds, instead concentrating its resources on visiting patients in their homes. Most patients in Elim and nearby areas live far from the hospice and the nearest hospital, and cannot afford the bus fare or are too weak to travel. Many simply prefer to die at home, in order to be close to loved ones and in familiar settings, and often because the family cannot afford to transport the corpse back home for burial after death.
Many thousands more in the area are in need of the hospice’s services, but they do not seek help due to denial or fear. Those who contact the hospice usually do so only in the later stages of the illness, after their pain has become unbearable.
“There are so many out there, but they don’t want to see the hospice truck coming to their homes because everybody knows it is associated with HIV/AIDS,” says Thandi, a resident of Elim who began volunteering for South Coast and now is paid a small salary to work fulltime as a caregiver and assistant to Cele.
HIV/AIDS continues to carry a potent stigma in Africa, where strict taboos on talking about sexual promiscuity and death are common, and those sick with the disease are often socially ostracized.
Thandi tested HIV-positive last year. She is in good health and is taking ARVs, which the hospice provides gratis for those HIV-positive employees willing to declare their status.
Thandi says she was infected by her husband, who returned home from his job at a mine near Johannesburg when he became sick three years ago. He had refused to be tested, and it was not until last month that he admitted to Thandi that he had known his status years ago, but had not said anything fearing his wife would abandon him.
Thandi has not told her patients that she is HIV-positive. Nor has she told her two sons, aged 17 and 20, although she says she speaks to them about HIV/AIDS and the importance of abstention and safe sex constantly.
Little by little, hospices like South Coast have begun chipping away at this stigma, organizing support groups composed of people who are HIV-positive, and using palliative care as a beachhead to initiate broader discussions about HIV/AIDS and sex.
“Almost 100 percent of our patients have divulged their status, and that means breaking the silence, and reducing the stigma and bringing HIV into the open,” says Kath Defilippi, CEO of the South Coast Hospice. “Palliative care is very strongly linked with prevention of HIV … We have a number of young people who almost on their death bed will tell their friends, their peers, to stop this risky lifestyle, saying: ‘I’m here because I slept around.’ This can be much more powerful than any media campaign.”
Most hospices in Sub-Saharan Africa rely almost entirely on donations from foreign aid organizations and governments, as they do not charge their patients, who are usually desperately poor.
Until recently, donations to palliative care have been sporadic at best, as money from abroad has instead gravitated toward prevention campaigns, the search for a vaccine, or helping AIDS orphans.
This has begun to change, however, as donations have begun trickling toward the hospices in recent years.
“Donors have only just begun realizing that palliative care is an absolutely crucial element in the fight against HIV/AIDS,” says Mary Callaway, associate director for the Open Society Institute’s International Palliative Care Initiative, which began funding hospices in South Africa in 2002. “They also are realizing that a little money goes a long way. Palliative care is cheap and these hospices are already out there caring for people largely through volunteer work and on shoestring budgets. The unmet need is still overwhelming, but with an injection of funds, the hospices have the potential to expand exponentially.”
Some believe the breakthrough in international aid could be U.S. President George W. Bush’s five-year Emergency Plan for AIDS Relief, called PEPFAR, in which 15 percent of its 15-billion-dollar budget is allocated for palliative care. Never before has a major international aid program designated funds specifically for this purpose.
The first 350 million dollars in PEPFAR funds have begun to be disbursed in the last three months, according to U.S. Global AIDS Deputy Coordinator Joe O’Neill. Most of the PEPFAR money - 55 percent - is earmarked for the purchase and distribution of ARVs to as many as 2 million people in at least 12 nations in Sub-Saharan Africa in addition to Haiti and Guyana. This influx of ARVs, which is part of a broader international push to make the drugs accessible in the developing world, could greatly lighten the burden of the hospices.
PEPFAR has generated huge expectations in Sub-Saharan Africa, but it remains to be seen how much money will get down to the grassroots level.
As hospices wait for the new funds, their efforts to care for the dying appear to be gaining momentum.
Hospices in South Africa, Zimbabwe, Tanzania, Kenya and Uganda have formed national associations, which have lobbied governments, standardized practices of palliative care and offered training and technical support. In early June, 160 representatives from hospices in 22 African nations gathered for the first time in Arusha, Tanzania, to create the African Palliative Care Association.
In response to the hospice movement, some African governments, led by Uganda, have stepped up their commitment to palliative care, supporting hospices and making morphine more widely available.
Still, hospices are rare or non-existent in poorer nations such as Malawi, Ethiopia and Angola, and much of French-speaking western Africa. Even where hospices have a stronger presence, they do not come close to meeting the need.
“We are still only a drop in the ocean,” says Carla Horne, director of the Hospice Association of Zimbabwe. “In Zimbabwe alone, 2500 people are dying every week. Community efforts to care for the sick just bubble up naturally because there’s such a need.”