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Foot soldiers in AIDS fight; African hospices ease pain, chip away at stigma Donors begin to realize value of palliative care
The Toronto Star
Sun 18 Jul 2004
Byline: Reed Lindsay
Source: Special to the Star
The white pickup 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 uniform adorned with epaulets, 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 South Coast Hospice.
A young woman confirms that indeed her 34-year-old cousin died three days ago. A baby now sleeps on the thin, worn mattress where the cousin spent her final days.
In these winter months, 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 Elim's expanse of ridge-top huts, 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 her 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, painkillers 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 UNAIDS, the Joint United Nations Program on HIV/AIDS, 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 infected people are likely to die this year.
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 caregivers operating 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 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 UNAIDS says 28.5 million people (or 71 per cent of the world's total) are living with HIV/AIDS - most hospitals have neither the resources nor the expertise to care for dying AIDS patients. Hospices and the volunteers with whom they work are often the only source of support for those who are dying.
In the last decade, dozens of hospices have formed to provide what is called palliative care - helping people cope with pain and with the trauma of facing death.
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 meagre subsistence farming. Just as they did under apartheid, many men leave their families to work odd jobs in cities or as migrant labourers.
The prevalence of migrant labour combined with crushing poverty has created ripe conditions for spreading HIV/AIDS.
At South Coast Hospice, Cele 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 ever-growing number of new ones.
South Coast is based in KwaZulu-Natal province, considered the epicentre of the HIV/AIDS epidemic in South Africa.
A 2002 survey of antenatal clinics in KwaZulu-Natal showed 36.5 per cent of pregnant women to be HIV-positive, the highest of any South African province.
In order to handle its growing caseload with a limited staff, South Coast has teamed with family members and volunteers who often provide 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 beds, so it concentrates on visiting patients in their homes. Most patients live far from the hospice and the nearest hospital, and cannot afford the bus fare or are too weak to travel.
Many decide to die at home, in order to be close to loved ones and in familiar settings, or because the family cannot afford to transport the corpse back home for burial.
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 at South Coast and now is paid a small salary to work full-time 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 living with the condition are often 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 that he had known his status years ago, but had said nothing, fearing his wife would abandon him.
She has not told her patients that she is HIV-positive. Nor has she told her two sons, ages 20 and 17, although she says she often speaks to them about HIV/AIDS and the importance of abstinence or safe sex.
Little by little, hospices like South Coast have begun chipping away at the stigma, organizing support groups and using palliative care as a beachhead to initiate broader discussions about HIV/AIDS and sex.
"Almost 100 per cent 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."
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.
"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."